I am Not Going to Ask You Again...

Happy Birthday, Marriage.

2010-10-10T17:21:00.000-04:00

My marriage is twelve today.

Wow. Twelve years ago today I pledged my life to a young Air Force Pilot that barely made it to the wedding. Twelve years ago I thought a white dress, a big fat diamond and a DJ meant marriage. I dreamed of no longer sneaking around, being free to see my man whenever and wherever we chose, not having to explain where I was or how I got there. It meant the end of phone bills I paid with my credit card(s) and the beginning of beautiful, blissful mornings and never having to say goodbye.

Riiiiiigggghhht.

So our marriage is twelve now. And I can’t stop thinking about what twelve looks like. It’s sixth grade. It’s braces and training bras and changing voices. It’s learning when to talk and when not to. It means still making silly mistakes and hoping no one sees them. It’s awkward. And that’s where we are. We’ve moved out of our toddler/early childhood stage and we’re working into awkward pre-adolescence. We are becoming. We are moving. We are growing. And as long as we are doing this together, that’s all I care about. I know this marriage is essential to the well-being of four little girls. They depend on this marriage maturing. And it is. We are learning to adapt to our new roles, shift our perspectives to the common good, to release the safety in selfishness. And I’m so excited and thankful for what we are becoming.

And I’m so very thankful for the man my husband is becoming. And I’m really thankful that he sees my (ever annoying) shortcomings and looks past them. Especially lost ATM cards, dirty laundry, costly procrastination and disorderly conduct. And that all happened this week.

So when I think about what my dreams were for our marriage, they are just a little different now; now we have our kids sneak around, we have the best conversations oceans apart and we spend beautiful blissful mornings surrounded by four beautiful babies. We say goodbye, but we do it with smiles instead of fearful tears. And I love that. I love how this marriage has aged.

And I love you, Alex, for your commitment to this family, for your dedication to this marriage, for your patience with me, and your faith that makes all that possible. I love you so ferociously and I want to be better at letting you know that. Happy Anniversary, Big MAK! I love you!

Watch Your Ankles, Lady.

2010-06-26T02:11:00.000-04:00

Pizza Buffet. Four tired little girls. A pre-menstrual Mom. And a mean old lady.

That’s what’s got me spinning tonight.

We spent the whole day out running errands today. Mostly returning stuff to our usual places and getting a little lunch out. There’s this little Pizza Joint that ‘s a pseudo Cici’s that we love to eat at. Unlimited food seems to be a big pleaser for this family.

Some days the girls are just off. Especially after a night of not-so-good sleep or a morning of too much TV or just not enough structure or attention. These days suck. They suck the life out of me because my kids and I aren’t speaking the same language. It’s like even the subtitles are in a different language. I say “Please sit on your bottom” and they look at me as if I’d just said the Pledge of Allegiance in Mandarin. So I was NOT happy when I had to pull Edie out from underneath the thirteen HUNDRED dollar grill and tell Sophie to put down the sprinkler flags for the fifteenth time. All I kept thinking was that I needed food in my belly and everything would be ok.

…onto lunch.

White pizza, soup, salad, dessert. Unlimited cherry coke and mello yello. For real. Do you see why this place ranks high? We made our way to our tables and picked a place where we could park a stroller next to our table. We enjoyed lunch…Telemundo and Cartoon Network on the plasmas and we all just kinda vegged. Edie finished first and decided to take Lil A for a lil stroll around the table. I was at most 2 feet from her at all times and as the lady bussing tables approached, I told Edie to come back with Audrey….

…pause….

We get compliments all the time when we are out in public. People always ooh and ahh at our four girls and smile and wave and gush over how cute and sweet they are. We get approached in restaurants by people all the time…people say ‘oh, how well behaved your girls are.’ And ‘oh, what sweet little girls you have’. ….

….play….

….Edie rounds the stroller in a circle and the bussing lady has to wait for me to corral her…at this time I look up at a woman sitting across the row from us. She is making eye contact with the bussing lady. Her eyes say it all. She looks with disdain and disgust at Edie. She rolls her eyes and looks to the bussing lady for confirmation. The bussing lady looks at Edie and smiles. I apologize to bussing lady.

I turn to Alex and explain what just happened. I watch the (mean old) lady get up to get more food. I am seething. Edie has done no harm.

Then I go bad.

“Edie, go take the stroller and run into that old lady.”

Oh yes I did. I told her to purposely crash the stroller into the ankles of that bitter old woman. I TOLD MY CHILD to take the stroller and use it to cause bodily harm to another human being. And I was not playing.

And she looked at me and said “What, ma?”

And I regained my composure and said
“nothing, babe….nothing.”

Before she left, the lady made it a point to go to the table next to us where sat a father and his two girls that were at least 10 and 12. She gushed about how well behaved they were and how kids these days have horrible manners.

Just as the estrogen in my blood stream, my temper spiked and I thought I would get loud for a minute and give this lady a piece of my mind….that I would tell her to not judge me….that I would tell her to walk a mile in my nursing bra.

But I didn’t….I left there discouraged. I left feeling like a terrible parent. I left feeling like I’d let my children disappoint me again with their behavior. I left there thinking all the thoughts of someone that was looking for favor and approval from perfect (or imperfect) strangers.

But tonight... now…? I am remembering what makes my kids so awesome and my family so different: Sophie leaving the dinner table saying her cheeks hurt from laughing so hard; Charley sharing her favorite Barbie with a sister who could so easily snap Barbie’s neck and leave her permanently disabled; Edie offering Audrey a toy she ‘can spit on’.

So it’s not all about how my kids behave in public….it’s not about how proud they can make me….it’s not about how many compliments old ladies give me…it’s not about who can get through Home Depot without jumping out of the cart.

It’s about their hearts and whether or not they know to love others as they love themselves.

Even mean old ladies.

Dear BP

2010-06-21T00:11:00.001-04:00

Dear BP, I think I know what will stop the leak. Rice Crispies. P.S. Does anyone have a pick axe or a cetyline torch I can borrow?

Only a Girl Named Julie....

2010-06-07T07:12:00.003-04:00

Yesterday was a great day at church. Even though my jeans were too tight, and Charley couldn’t find satisfaction in any of my shoe choices for her and Edie had a glob of conditioner in her hair from last night’s shower, we made our way to Journey Church at our new location at Park Vista High.

I learned a lot yesterday. I learn a lot every Sunday there….even if I don’t step foot into the Sanctuary. Just getting there teaches me patience.

Yesterday PScott talked through 1 Samuel. He challenged us all to find our Goliath. I’ve been staring down my Goliath for weeks now, slowly slipping into the armor, only to find that it’s too big and too cumbersome and way too heavy to allow my arms to cast stones. All I need is a sling and a stone.

Yesterday I got my sling.

Today I’m going after the Goliath of Perfectionism in my life.

He whispers to me every morning.
Why get up…you’re already so far behind?
You know if you start this, you’ll never finish.
You know what people will say if you don’t finish.
What will people think when they see another one of your fine messes?

It screams to me through half-hung curtains, wrinkled dresses, and dirty fingernails. It shouts to me through my unmade bed, a glob of toothpaste on the bathroom sink, and the gap between my teeth. It screeches to me in the piles of upaid medical bills and birthday cards I never send.

For me, perfectionism paralyzes me and silences me.

So this morning, I’m answering back.

Because people are depending on me.
I will finish…and I won’t take twenty years to do it.
God loves me anyway....even if you don't.
It will be my fine mess. To His Glory.

So this….THIS is one of my stones. I’m picking up this stone. And I’m chucking it.

See ya, Goliath, I’m about to hit PUBLISH.

Perfectionism isn’t a problem because it does too much, it’s a problem because in trying to do too much it causes us to do nothing at all. Dustin Wax

Seriously, Venus?

2010-05-23T23:37:00.004-04:00

I thought it was Halloween for a minute.

Caption Please.

Happy Birthday to Me

2010-03-26T07:21:00.000-04:00

Thirty four years and eight months ago my parents made the decision to keep me. Though their lives were full already with two beautiful children, they decided to take a chance on one more. And today I am very grateful for that.

Their lives were already very full. They had a brilliant six year old that blessed them with her amazing perspective on life. Amy was energetic and precocious. She loved her little brother immensely and was a big help to her mom. Richie was a precious, loving little boy that was born with a genetic disorder that would have him hospitalized often for many different reasons. He was needy but happy, and Dad had his boy. And yet, they took a chance on having another baby. And they welcomed me in March.

Little did they know how that decision would affect the rest of their lives. And the rest of mine.

Six months after I was born, our lives shifted. As a result of pregnancy, my Mom got very sick. She could no longer care for my sister and brother and I. She was hospitalized on and off for the next four years. Sometimes it was for a short period to stabilize her health. Sometimes it was longer. Time was frozen and hearts were broken. I can’t imagine how it must have changed our family’s dynamic. I can’t imagine the grief she felt, handing over her six month old baby to endure hours, days, months of treatment. I can’t imagine the torture my Dad felt having to admit his beloved and leave her behind. Amy was six, and had to quickly become a little woman, while her little heart was breaking inside her. Richie had to give up his Mommy and the precious care that only she could give him. The threads of our family unraveled the day that Mom was admitted.

And yet, my Mom says this on her facebook status:

“well tomorrow at 11:51 a.m. my second oldest daughter will be 34 years old. How time flies! I am so happy and thrilled that she is mine! I love you Julie> Love and many, many kisses-Mom”

And at 7:11 this morning, my Dad sends me this email:

“Happy Birthday to you. Happy Birthday to you. Happy Birthday Dear Midget. Happy Birthday to you!!!!!!! I'm sure that the day you were born, God looked down from Heaven and said, "Am I good or what!" I just want to wish you a wonderful day and to tell you how proud I am of you. We are truly blessed.I love you.Dad”

My parents endured severe emotional and physical pain to have me. They didn’t know at the time that their lives would be affected the way they were. My Dad didn’t know he’d be shaking his fists at God for years to come. He also didn’t know that one day he would trust God with his life. My Mom didn’t know what blessings were to come in hers either, yet she trusted.

So today I am praising my God, who gave me parents that believed enough to bring me into their family, who has taught me so much about His grace and His sovereign plan through my parents, and who can restore brokenness like no other.

Thank you, Jesus, for allowing me this life, for allowing me to feel the miracle of parenthood, for blessing me with a husband that hears you and loves you, for amazing daughters that test and try and teach me. Thank you for this celebration day. The glory is all yours.

Flooded.

2010-03-04T16:11:00.003-05:00

I started this ambitious journey of tap water about 13 days ago. I had no idea how broken it would leave me mentally or how challenged I would feel physically. Yesterday was a breaking point. The girls and I loaded up and headed to CBS in the morning and we were only about ten minutes late. This was the latest we’ve been so far, and it was mostly due to my lack of sleep. Thankfully, it was Pajama Day. No, the girls didn’t go in the jammies they’d slept in the night before. They all wore clean, matching princess jammies, of course.

I brought my glass of iced water and my Kashi bar and hoped that would get me through the morning. It did, but once I hit 12:30, I was totally exhausted. My body has needed caffeine for days and yesterday I hit the breaking point. I couldn’t think straight, my mind was racing, and I felt trapped in confusion. It was painful. I wanted to cry. I DID cry. Not only do I use caffeine to wake my tired body in the morning, but I use it as a medication. I was diagnosed with ADD when I was 25 and have been on several medications since. I remember the first day I took Concerta and felt for the first time that I wasn’t limping around on half a brain. I washed my car that day, from start to finish. Then I put everything away. The vacuum, the sponges, the soap, the hose. Then I sat and cried. Multi-step tasks were never easy for me. I finally felt capable. It was wonderful.

But then I started having babies, and stimulants and pregnancy don’t go well together. I got off the meds and started drinking coffee. It wasn’t the same, but it was almost better. I could drink coffee and not worry about major side affects. It warmed by belly and my soul and helped to put the puzzle pieces together as well. I could have a cup (or 3) in the morning, and dose again in the afternoon and avoid the mental fatigue I’d suffered my whole life.

Then I heard about the blood:water mission via Anne Jackson. I heard about the 40 day challenge. Forty days of nothing to drink but water. I loved the idea from the beginning, though I was a little apprehensive of giving up my beloved fountain Dr. Pepper and my beautiful morning mug of happiness. But a fast is good for everyone, at any time and I knew that. I jumped in, registered and drank my last DP for breakfast the day before.

But then my house flooded. And my belongings were strewn about my house like a rogue wave of my lake came through. And I was overwhelmed. Overwhelmed to the point of tears, setting my timer, but never able to figure out where to start. My disorganized approaches left me exhausted and without a single sign of order. To be honest with you, I’m still sitting in a mess here. But there is hope.

I’ve been praying for help. I’ve been praying that God would help me get this place together, that I would stay focused for 15 minutes at a time and be able get this stuff back where it all belongs. I know one cup of coffee would be my jumping off point. I know one cup would allow me to focus, make a dent in the work and feel better. But I don’t wanna give up on my commitment to blood:water. And you know me, the legalist I am, I WON’T give up. So yesterday my sweet husband (who has given up soda as well) sent me in to the gas station to pick up his King Size Peanut M&m’s and I see this.

Oh, Sweetest Jesus. Seriously? Caffeinated GUM? I thought for a minute I was at the Pharmacy, picking up my prescription. Did I gobble up a piece? No. I waited. I waited until this morning, when I knew that I would need it for a shopping trip to BJ’s with four little girls. And it worked. I parked the car, got all four girls out, hooked my keys on my purse, grabbed my phone and put it in my purse, closed and locked the van, headed into BJ’s and started getting the things on my list that I did NOT leave in the car, did NOT get overwhelmed when looking for breakfast bars, did NOT freak out when one of the wheels on the shopping cart mysteriously stopped rolling, found my BJ’s card without a hitch, did NOT lose the receipt from the cash register to the receipt checker guy, got back to the locked (!) van, unloaded and drove away. Thank you, Lord, for sending AMP’d gum.

Now this fast will be what it was intended to be for me, enduring and sacrificing for the sake of others, reminding me what luxury I have in clean water, and praying for His strength and proximity as I struggle with cravings and weakness… NOT the home destroying, depression inducing, mind boggling fast that was once killing me one morning at a time.

Will you consider joining me in a forty day fast? Check here for more details and follow #40days on twitter.

Wrapping my mind around Matt Chandler’s Brain Tumor.

2009-12-16T16:06:00.003-05:00

On November 26 of this year, Matt Chandler fell ill at his home. He had a seizure. They took him to the doctor. They did some diagnostics. They found a tumor. They did surgery. They waited for the test results. They got the results. Malignant. Non encapsulated. Horrific.

When the Village Church said they were waiting to post results of Matt’s tests, I had a sick feeling at the pit of my stomach. But I reminded myself that no news is good news. That’s what we always hear. But that wasn’t the case this time. This time was no news was the worst news.

Flashback…September 2001: Beltway Park Baptist Church. Our pastor, David McQueen was out of the country on a trip to Israel. Matt was the college pastor at Beltway and spoke the Sunday after the 911 massacre in New York City. Alex had always been a huge fan of Matt, even after he (Alex) decided that church just wasn’t for him. But he came back, the Sunday after 9-11 and heard the message that thousands of preachers were preaching on that Sunday. But this was not just a message from Matt. None ever were. He was funny, emotional, loud, quiet, loud again and just utterly amazing, convincing, and loving. I sat next to my unsaved, rebellious husband and watched him tremble as Matt gave the ‘invitation.’ I didn’t know until over twenty four hours later that Alex had accepted the invitation.

Jesus changed us in Abilene. We found hope, safety, acceptance, gratitude, wisdom in that place. Matt Chandler was a huge part of that. I wore out my sermon tapes (remember those?) listening to stuff that boggled me and encouraged me and challenged me and even pissed me off sometimes. We were new. But the voice of truth spoke loudly to us there and we were forever changed.

We left Abilene with incredibly heavy hearts as we trekked across the US to Mississippi, but through the internet, we were able to download sermons and listen to our favorite church and pastors with full hearts and tears in our eyes. We followed Matt to the Village, and watched the explosion of the hearts in E. Texas. We listened to Matt’s messages often and that piece of our hearts that will always be in Texas would join us again in the voices of Matt and David.

Our transitions always brought us spiritual and emotional challenges, and once again we found ourselves back in Florida and listening to Pod Casts. Then we find out that Matt Chandler isn’t just Matt Chandler from Grace Bible Study in Abilene. We find out that his fans and followers are worldwide and share the same love for him we do.

And now we face this next step in Matt’s life. Three small children. A beautiful and brilliant wife. Love for Jesus all over this family like crazy. And trusting in God’s sovereignty and grace and healing. Me too. I’m praying like crazy for this family I’ve never met, that would never know me, that has never known that I’ve cried tears of relief at hearing that the surgery was finally over and I could sleep. They don’t know that Alex and I have held hands and hearts and lifted them up because it’s all we can do. But I know it’s the best we can do for them. The best.

And I wonder for Lauren. I wonder where she is, what she is feeling, how she must be struggling and surviving. I think about my house, with my three children, their incomparable and whole hearted love for their Daddy. I think about the silence that comes on the nights that he isn’t here. I think about how she has endured that, without the beautiful sound of a text message alert in the middle of the night saying ‘here’. I think about how I’ve already googled Matt’s diagnosis with tears streaming and how I would crumble into a million pieces thinking of a future without my husband. I think about the twenty eight thousand pictures I have of my precious man and his girls and how that may be the only way our children experience him. It is almost too much to bear. And in these moments, I just want to scream….and He whispers back.

He whispers back…for my Glory. It is for my Glory, Julie. Nothing can steal that from me, little one. But all of this can reveal it. In ways that you could not ever dream, I will reveal it. In ways that you may never see, I will reveal it. In ways that you will rejoice over, I will reveal it. In ways that you will relax in it, I will reveal it. But until then, little one, trust me. Drink in the sweet sedation that is me and wait.

And that is what I pray that He is screaming to Lauren in her moments of madness or sorrow and in her moments of celebration and gratitude.

And I thank you, Jesus, that Matt knows you like I don’t. I thank you that he is gifted with your presence…that he is able to communicate in ways that allow us to see you as we’ve never seen before. Thank you that he doesn’t fool around, that he shares the way he loves you and that the personal, precious walk he’s taken with you has become some of the sweetest moments of my life.

Do not be terrified.

Do not be discouraged.

For the Lord your God will be with you wherever you go.

Joshua 1:9b

If you feel led, please don't hesitate to send Matt and Lauren and encouragement at 2101 Justin Road, Flower Mound, TX 75028.

You can also get updates at the Village website: http://fm.thevillagechurch.net/blog/pastors/?p=453

Praying Again.

2009-07-27T15:09:00.002-04:00

Would you please pray for Stellan. He is very sick again....they are on their way to Boston.

Word Search

2009-07-09T00:10:00.002-04:00

Man, I'm tired. I'm just plum wore out.

And I really wish there was something to show for it. But there isn't, really. Mentally and physically exhausted, I've worked through this day with my jaw locked and my brow furrowed. I've spoken thousands and thousands of words, but feel like they fell straight to the floor and landed in a big puddle around my feet.

Every once in a while a little person would come pick one up...usually 'lunch' or 'cookie'. They liked those. But the others went out of my mouth and straight to the floor.

I picture some of them making it a few feet away, landing and bouncing around a corner, but the words sometimes just don't get heard. It helps to make eye contact. It helps to be touching a shoulder or a hand while I'm speaking. The words pour out a lot more gracefully that way, too.

Not so much when I am angry. They come out way too fast to be caught. They have razor sharp edges and stick like little chinese stars. Ouch.

Sometimes they come out happy and bounce around like little walmart happy faces. And then they bounce back. That's always cool.

My favorite ones are pointed heavenly. They bounce around in my head for quite a while before I let them go...carrying my heart with them. Carrying my cares...my will...and making their way around, up, over, until I am quiet again.

Thank you Jesus, for hearing every word. For forgiving the ones that don't please you. For loving the ones that do. For sending your own to comfort, guide, and soothe.

Nails

2009-07-07T11:26:00.000-04:00

I think this is the most amazing picture of my husband. My heart be still.

Perfect Pancakes

2009-04-05T15:01:00.003-04:00

Perfect Pancakes have always evaded me. I’ve blamed the stove, the pan, the spatula, the mix, and mostly the pancake maker. For some reason, I’ve always thought that making pancakes was always another indicator of good motherhood. I have friends that make a daily stack of flapjacks for their kids and I always thought my Eggos in the toaster took a sad second to their mixing, pouring, and flipping. I’ve avoided pancake mixes in the grocery store, just knowing that I wasn’t going to put myself through another failure faced as I scraped the charred remains of cake from the hot griddle. None were the same size, they were all differing shades of dark brown and tasted like a silicon frisby.

Until one day. One day I came across the show Good Eats on the Food Network. The topic for the show that day: Pancakes. I watched Alton Brown explain simply and succinctly how pancakes are really made….how simple it is to find the perfect temperature, how to only stir the mix for ten seconds regardless of what lumps are left behind and how you absolutely don’t need ANY butter in the pan if you’re using non-stick. Say WHAT? Every step I took in preparing pancakes was wrong. I was uneducated. I was overpreparing every step and creating problems for myself.

I just stumbed upon this show. I didn’t google “Perfect Pancakes” like I usually would for EVERYTHING. I didn’t call a friend. I didn’t consult any cook book. I just let the pancakes beat me. I lived with the fact that I could not make pancakes and took with that the fact that I was less of a Mom. It took a revelation to teach me that I could very well make pancakes. I could blend, pour, flip and serve with the best of them. I even got fancy with some chocolate chips.

Am I a better Mom than I was the day before Good Eats? Are my children better nurtured? Will they get better SAT scores? Will this keep them out of jail? Most importantly, does having a perfect pancake in the morning bring them any closer to the face of God? No….no it doesn’t. So once again, my notions on what makes a good Mom are shattered, and I am healed in another place by an amazing, gracious God that continues to rewrite my own personal dictionary.

Thank you Jesus, for your revelation, for your response, for the reminder of the truth and for the reward that is You. I love you more than perfect pancakes.

Freudian Slip

2009-04-03T15:34:00.001-04:00

Daddy was packing his bag this morning. When Edie saw the webcam in his bag she said, "Whaz that, Dad".

His reply:

"That's the camera I use to talk to you when I'm on vacation."

As soon as he said it, he immediately corrected. "I mean at work."

I had to smile. I'll be using this one for a long time.

right now

2009-04-02T16:46:00.004-04:00

Yeah, I know...it's been a while. I guess this is another reason that I'm not a 'writer' per se. Though I do like saying Per Se. Anyway, I just wanted to share what's making me happy right now.

right now:

my spandex clad man heading out to condition his heart (which rests at 50bpm...i know..)

my kiddos sharing an apple and muchly enjoying Madagascar 2. Moto Moto, baby.

thinking of edie's huge diaper at Gram's pool today.

watching the last post on josiah's blog.

my sewing machine on the dining room table. she's waiting.

evidence of my trip to stacy's this weekend. paper, paper and more paper.

coffee.

knowing my P90X is on it's way.

Please pray for Baby Stellan

2009-03-25T13:32:00.002-04:00

Please pray for this sweet baby...

Rare Disease Day

2009-02-28T15:23:00.002-05:00

Hug a person with a rare disease today!

RTS is considered a rare disease because it affects only 1 in 300,000. Yup!

Read more about it at one of my FAVE websites, http://www.specialfriends.org/. Then leave a few bucks for research.

Baby Bella Goes Home

2009-01-26T22:40:00.002-05:00

Another sweet RTS baby went home to glory on Sunday night. She struggled long and hard in her 23 months and I had the honor of praying with her mom, Monica a few months back when Bella was having a rough go. Once again, my gratitude is overwhelming. Please lift this family up today and give each of your kids a special kiss in memory of Bella.

Can't wait to see you, sweet Princess Bella. We love you.

I cried in Target today.

2009-01-13T23:19:00.003-05:00

Here we go again. Another late night, another tender heart from a day of tears. I'm not sure why I feel like this place is safe enough, but it is for now and I just have to trust that whoever is reading will know.

I cried in Target today.

Sophie needs shirts. My big five is finally getting too big for 4Ts. Before her little belly button sees sunlight as she hangs from her favorite playground toy (the zip line), I must get her some new t-shirts. On my mega two week shopping trip today, I was at Target and thought I'd check out the little girls' section to see if there was anything for Soph. The first gut-check came when I had to move from the toddler section to the girls section. Not because the shirts are at LEAST a DOLLAR more, but because my little girl was moving SECTIONS. That's crazy. I've never had a baby move SECTIONS before. So I was okay until I passed through the little door from toddlers to girls.

And a memory hit me. Like someone had come from around the corner and laid me out flat with a big, red, five hundred pound shopping cart, I was breathless. I'm not even sure what the emotion could be called at that moment...it was like suffocating gratitude.

Shopping used to terrify me. Before Soph turned one, I had no idea what the future would hold for her. I didn't know how many days had been ordained for her. I didn't know if I bought Sophie that sweet twelve month outfit if she would ever wear it. I didn't want to go through a closet one day to find that outfit and grieve the little girl that I loved so deeply that it choked me. So I didn't buy ahead. I know that was fearful and faithless, but I just couldn't.

When Soph was little...really little...I remember praying that she would have a first birthday. It was a daily prayer for me...that I would be able to blow up a hundred helium balloons, make the invitations, pick out her special outfit, send Daddy on wild goose chases for very specific items, create games and decorations and all that insane stuff that I really don't even understand now, but still love. I prayed every single night that Jesus would just grant me one more day with her and I prayed every day that Jesus would grant me the privilege of that celebration. And He did. And I'm sure people were wondering why I spent so much time behind the tripod wiping tears away at my little one's first birthday party, but it was precious. Just precious to me.

So I cried in Target today. Out of gratitude for the 5Ts that I was searching for...for the little arms and hands that will reach through those sleeves with sheer determination...for the little head that slips so easily through the neck hole, for the chest that holds a heart that still continues to beat pure love...and for the smile that continues to melt me in places I didn't know even existed.

Oh, I can scarcely take it in. Thank you, Jesus...for your provision, for your plan, for the precious privilege of paying one more dollar for a t-shirt. I love you.

THE weather man.

2009-01-05T07:55:00.004-05:00

The heavens are telling the glory of God; they are a marvelous display of his craftsmanship. Day and night they keep on telling about God.Psalm 19:1,2

"The sun shines back here every morning and I am sad, almost ashamed that I miss this amazing rebirth every morning. I know you aren't about shame; so I will not dwell in it, but I do mourn the many days behind me that I have lost because of my lack of sleep, discipline, zeal. Today is a new day though, and the way the sun is rising here is just another reminder of your faithfulness. I can feel your fingertips on my eyelashes as that huge ball of fire rises above the lake and kisses me through the trees. You are always with me, aren't you? You can be found at any moment if I believe that you are part of me. I can be full of love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self control. i can own all of those amazing gifts by abiding in you and finding my address on your street."

Overcast. Yesterday at this time, the sunrise was tickling my eyelashes and the chair I sat in felt like the inside of God's own palm.

Today the skies are white with billows of cotton, almost like the ground covered in snow on a wintry non-South Florida morning. I see the blue skies just behind the blanket of clouds waiting to make themselves seen in His time.

Instead of the warmth I felt yesterday, there is a chill in the air that only makes you slightly uncomfortable. Just enough to want a sweatshirt and until you go and get it, that discomfort will persist like a little five year old hungry for breakfast.

Though today is different than yesterday and the chair that I sat in yesterday is slightly damp and cold from the dew that hasn't burned off, I shouldn't feel any farther from God than I did yesterday.

But the truth is that I do. I know, it is so human of me. So conditional, so inflexible. But true.

A good friend and I were talking over coffee the other day and I mentioned that God has been so patient with me. Her response was "He's such a gentleman, isn't he?"

Uh. She was so right. So patient. So understanding. So tolerant. Though I awakened this morning disappointed that the sun was hidden, and was content in thinking that God's amazing miracle of one more day was just ok, He still meets me here.

He meets me here on this chilly back porch, from where I sit I see the chaos and confusion of two pink bicycles, a blue rubber ball hiding under the hedge, molded plastic cars that are poised and ready for their drivers. I see a lone flip flop that holds beauty that makes me gasp. I see Jesus here, in mismatched patio furniture, unfinished projects, and a stuffed puppy in the backyard baptismal font (the bird bath).

Yesterday, I felt the sunrise all over me...His sweet daily embrace. But that was yesterday. It was a different forecast with a different perspective. Today, an even greater gift - seeing another version of His physical miraculous in a world of extreme, undiluted blessing. My backyard.

Where oh where oh where oh where.....

2009-01-05T07:52:00.002-05:00

is my laptop?

Seems as if my prayer for the Lord to remove idols for me has been answered. My laptop is completely shot and I have been without wireless for a good three months now. The laptop is still disabled and until He says, it will stay that way. It is actually pretty refreshing. Sorry for the silence, but to me, it has been the sweetest sound ever.

Until my next post, enjoy some quiet yourself.

Unbelievable.

2008-09-19T10:22:00.000-04:00

The weather is unbelievably incredible today in sunny south Florida, the breeze off the lake is cool and comfortable and the only sounds I hear are of my children satisfied and occupied. Mmmmmm. Very cool.

I know that this could all change in an instant, and probably will, so I will bathe right now in this moment. In this moment, God’s favor is all over this place. I am awakened to His smile on my life, right here, right now. Though I am deserving no more than a miserable death, He once again unbelievably pardons me and demonstrates love toward me that no human is ever capable of.

Oh, how sweet. How incredibly sweet. And I am so grateful.

Does this mean everything is great? That today holds nothing but immeasurable satisfaction? No. No way. I’m living in a fallen world. Unfortnately, the prince of the air is here and I am a resident. I will be alienated, disappointed, angered, offended, and all of those other human emotions that are so much a part of this place. Most likely, absolutely, without question, before this day is over, I will separate myself from my God by my own mouth, will and thoughts. I will do the things I hate, and hate the things I do, just like Paul.

But I have a promise. I have a promise that though I am so flawed, so wrong, so helpless, I have an out. The price is already paid and the nails have already been set. Though I have chosen death for myself in every act of willful defiance, I have been promised life. Forever. I have been given the second chance that I have longed for. though the red stamp on the application of my life should say REJECTED, it says ACCEPTED… though I should be riding straight into hell at 1000 miles an hour in the Devil’s handbasket, I am ushered softly into the arms of forgiveness, grace and mercy. Wow. That’s good stuff.

So, I will embrace every moment, though the breeze may turn into stifling humidity, sounds of children playing turn into raging screams of terror, and my home becomes deserving of a government declared disaster area, I will remember that I am favored, never forgotten and unbelievably forgiven.

What a NIGHTmare.

2008-09-04T07:27:00.005-04:00

Praise be to the name of God for ever and ever;
wisdom and power are his.
He changes times and seasons;
he sets up Kings and deposes them.
He gives wisdom to the wise
and knowledge to the discerning.
He reveals deep and hidden things;
he knows what lies in darkness,
and light dwells with him.
I thank and praise you, O God of my fathers.
You have given me wisdom and power.
You have made known to me what we asked of you,
You have made known to us the dream of the King.
Daniel 1:20-24

So many times I have cried out to God for insight into my own life. I have cried “Jesus, please reveal to me your purpose in this season, for this time. Help me to interpret the ‘nightmare’ of my life so that I will feel some relief from this pain, anxiety and sorrow.”

Daniel’s prayer was pretty different. Daniel’s prayer was selfless-unselfish. Daniel’s prayer was for God to use him to help a king that had imprisoned him. For a king that would have him almost destroyed for his faith and fellowship with God.

God revealed to Daniel what Daniel had asked for. Daniel asked for the answer to the king’s question. Daniel asked for the specifics of the King’s dream. Daniel did not ask for the answer to the specifics of his own life. Daniel’s selfless prayer spared a nation of unbelievers. Daniel’s prayer also spared his own life and the lives of his friends.

Do we pray unselfish prayers? Do we pray “God, help me to minister to my boss today that needs you…I know that he is terribly annoying and makes Michael Scott look like the picture of professionalism…but please bless him with joy today.” Do we say things like “Lord, let my trip to the grocery store today be about you…if I need to stand in the express line for 20 minutes with three kids screaming for tic tacs so that your glory is revealed to someone hurting and scared, let it be.” Do we pray “Dear Jesus, help me to bring comfort to my neighbor…I know that she called the Sheriff last week because my kids were making too much noise in my backyard, but please bless her. Do we say “Dear Jesus, give me love and patience so that I can bless the people at the DMV with a smile who forgot to tell me that the wait time was 48 minutes.”? Do we say, “God, please help me to lay a loving hand on the teenager that causes me to cringe with the words she says and the looks she gives me.” Do we say, “Please heal my friend of the wounds that she has since childhood. Help her to forgive her Dad.” Do way say “Lord, please give me wisdom so that I might be a comfort to my friend that is lost in her own sin.”

No? Me neither. Usually my prayers are:
• Tell me
• Bless me
• Heal me

Bless my day, make my day smooth, bless my life. Reveal your plan for me. Let me complete this task.

What if Daniel’s prayer was like my prayer?

I think it would be like this:

“Lord, this King had a dream. He’s gonna kill everyone if he can’t find out what it means. Would you please send an interpreter so that we don’t die? Would you bring forward a brave person that is willing to let the king know? And God, listen, if you really need me to do it, please make it REALLY obvious. I’ll wait to hear from you, k?”

What if Daniel was too terrified for his own life to ask for wisdom? What if his prayer was “Use someone else, God, but protect me and my friends.”

Or what if it was “Thanks, God, for your amazing favor, but I would really be happy to just have some quiet time with you and then keep my mouth shut about you for the rest of the day. You know the people around me. They don’t dig the “God Talk.” It makes me feel awkward, too, God. So I’ll meet you here tomorrow and we’ll spend time together. Just you and me.”

Daniel knew. He knew the worship of the One True God , the one for which he spent time in prison, was more important that his own needs and the desires for his life. He acknowledged God’s power and wisdom. He trusted that God had given him the same.

Daniel thanked God for providing him the means (wisdom, power, light, revelation) to bless others. Daniel spared the lives of so many because of his unselfish prayer.

Today, with the same unselfish prayer, God can save lives by using you and me.

Invite Him today to
Reveal Himself to others
To bless others
To heal others
And to change you.

Someone else’s nightmare can become your dream come true.

The R-word.

2008-08-15T22:43:00.006-04:00

When I received an e-mail the other day from a friend that belongs to an RTS listserve that I am a part of, I knew from the subject line that I would be in trouble. For the past several months, I’ve been struggling with whether or not I would write about this subject because I know that people who are reading this who love and care much for my little Sophie may feel a little awkward. People reading this may recognize themselves in what they have said in my presence that sent shockwaves through each of cell of my body, originating from my broken heart. But this is something I must express as I feel a strong prompting from the pit of my very soul that will not let me rest.

My daughter is intellectually disabled. She is developmentally delayed and according to many tests, Sophie’s ability to interpret, analyze and comprehend is below normal. This is not news to me or bad news to me. This is exactly how God created her, fearfully and wonderfully. I am all good with this…with her.

So why am I writing tonight? Why do I feel this intense, stomach grinding, heart wringing, teeth clenching feeling?

Because there was a movie released this week that includes a character called “Simple Jack” played by the popular actor Ben Stiller. Simple Jack has an intellectual disability (formerly commonly referred to as “mental retardation’). In one scene the word ‘retard’ is used sixteen times and a catch phrase used in the movie is ‘never go full retard.’ The t-shirts have already been printed at Café Press and anyone can buy one. It makes me nauseous.

I guess some people think that they have permission to take God’s precious creation that has taught me more in five years than a lifetime of school and whiddle her down into someone that has less worth than you or I.

Someone thinks that a t-shirt that says “I KICK RETARDS” is funny. Someone will buy and wear that shirt. I know because I’ve seen it. I’ve felt it. I’ve cried over it. I’ve heard the phrase “Do you ride the short bus?” more times than I care to think, and heard the term “retard classes” when referring to Special Education. I’ve walked my entire life with someone who has struggled for independence and acceptance and now I am raising someone that may be doing the same. When I see a t-shirt that says “What’s better than winning at Special Olympics? Not being retarded”, I can’t help but buckle and pray that Sophie will not feel that way. We are SO excited for Special Olympics…one more year.

I guess what I need to know and want to know is why this abilism (my word for discrimination based on ability) is so very acceptable? Could you imagine if we had a CafePress subgroup for racism? Or a supgrouping for funny, humorous anti-Semitic t-shirts? No…not so much. Why? Because it is wrong. People know it is wrong and won’t stand for it.

But because this group of people…this vulnerable, sweet, beautiful group of people cannot advocate for themselves or get pissed enough to picket and protest, some people think we won’t care. But guess what? Their parents will. They will stand outside of the movie theaters with their signs and placards because they know that this is unfair, ignorant and downright wrong. And it must change.

As a follower of Christ, I know that Jesus has told us to love one another. I don’t think that finding humor in someone else’s struggle is love. I don’t think that Jesus would find joy in another’s struggle. I don’t think that he would make tasteless jokes about certain populations of people that continue to be oppressed. I think that He would want us to embrace the least of these and take care of those who may struggle to do that for themselves.

So please watch the video again and remember that the ‘R’ word should never be used as an insult…whether you’re speaking about yourself, someone else, or some situation you’ve ever been in. I have embraced the word ‘ridiculous’ instead…that seems to work for me.

And if you’re planning on seeing the movie, I won’t tell you to boycott it, but I will ask you to please remember that someone somewhere is caring for and loving a Simple Jack and they deserve nothing more than support, love, care and respect.

Video created by the Arc of Virginia and the Arc of Northern Virginia, and Blueberry Shoes Productions

Remembering Miller Grace

2008-06-27T00:49:00.002-04:00

Please pray for Emily, Matt, Hope and Mattilyn as they remember their precious Miller Grace today.

Her five days changed me forever.

No Rest for the Unweary

2008-06-16T08:14:00.003-04:00

So yesterday was a pretty revealing day for me. Church was awesome and there were many 'nuggets' that I took from the sermon that encouraged me to go home, sit down with my dusty bible (oh, how that grieves my heart) and seek out the truth, wisdom and encouragement that I so desperately long for but so stubbornly deny myself.

The bible says that everything in the dark will be brought into the light. I had a dark day yesterday. I've known for days that my fuse was getting shorter and my patience wearing thinner as the clock ticked past 2am for at least five consecutive nights. Getting ready for church with no sleep and trying to coordinate the exit of three clean and pressed girls and myself was my biggest challenge. Needless to say, it was not a quiet, peaceful Sunday morning. Edie's runny nose, Sophie breaking the jewelry I'd set out to wear, and Charley peeing all over my bedroom carpet (as a result of her own stubbornness) had me feeling like I was speed skating along the edge of the Grand Canyon. And I just kept asking myself why I hadn't gone to bed just a little earlier. Why didn't I do the mature thing and turn myself off at 10pm like all of my friends do and get in bed. Why couldn't I start my settle down at 9pm and work a bedtime routine that would have FlyLady in purple puddles.

But no, I'd watched the clock hit 1:59am again and finally drifted off to oblivion. At 6:59, Sophie drifted into my room and once again, the regret of not going to sleep earlier came crashing down like a dumptruck unloading cheap china. Not again, I thought. Another insomniac hangover and there's no turning back. I kept thinking "I've just gotta make it to naptime when I can finally catch up." Ug.

So yesterday morning meant tears, screaming, frustration, more tears, the look of fear and sadness in my kid's eyes and a headache that would take more than caffeine and ibuprofen to cure. My heart was broken before I even crawled out of bed and I was determined not to end up there again. The feeling was reminiscent of the endless promises this addict makes to herself not to let it happen again. Exhausted again. Ashamed again. And when the message yesterday was about freedom and not believing lies and finding truth in scripture, I was determined to do just that. Find sleep scripture that would remind me to get to bed, rest and be refreshed enough to be effective in this life of endless duty.

I googled "scripture about sleep" determined to find the answer to my problems and, of course, came across this blog. And I clicked a link that has me thinking. After years of being called a 'night owl', it seems there is a clinical description and a syndrome that may be the revelation I was looking for. Delayed Sleep Phase Syndrome. There it was. Here I am. You see, I don't get tired until 2am. At 2am, my body says, "OK, it's time to get ready for bed." I don't feel that way until then. I remember Syd, my roommate in college getting ready for bed every night at 9 and was sleeping at 10. It was beautiful and fortunately, she'd make me go to bed, too. There has never been bedtime for me. It is awake time...then sleep time. That's it. I remember being in high school and wandering the house after 2am, after all my phone friends had gotten too tired to hang. I remember pulling effortless all-nighters in college, where most of my friends dreaded them. Long after college, I remember long nights when Alex was in the desert and I would be up decorating and doing projects well past 4am. But then I could sleep until noon or 1 and I was good. But not now. Now I have three toddlers that need oatmeal at seven. And a Momma that is capable of doing that. Doing that with a smile and a hug even.

Last night, I was in bed at 11. I feel asleep at around 12. I expected fully and totally to feel 100% different this morning. I expected the singing robin to come perch itself on my headboard and the squirrels to come clicking to the window to greet me with the morning in true Snow White fashion. I expected the sounds of the morning to sing a welcoming hymn to me as I woke refreshed, renewed and ready for the day. Um..not so much. I am still grumpy, short, and I just tied the laces on that pair of skates I talked about earlier. And I have no idea what to do about it. Buy a light? Talk to my doctor? Gobble some Ambien at 9? I have no idea.

I'll go and search my scripture, and post it all over my house. I'll set my alarm to go off at nine to be in bed by eleven. I'll read more about DSPS and I'll pray.

Wow. Pray. Now that's an idea. Here's to bedtime.

Absolutely, uncontrollably grateful.

2008-05-23T21:03:00.009-04:00

I'm not even sure what I am going to write here..I just know that I feel like I should be here...writing.

Weighing most heavily on my heart this evening is gratitude through grief. I am grateful for three girls. Three girls that are sweetly socked away in deep sleep in the next rooms.

I am so grateful that I am not sitting in a hospital somewhere praying for something mirculous to happen. I am so grateful that I am not contemplating the last breath or last rites of my child...I am not thinking of the dress that will clothe her or what shoes her sweet feet will be wearing or which side her braid should be on until she turns to dust... I am not picking out the sacred bed that will hold her head, or the men that will carry it on that day. I am not dreading the closing and locking of a door that should never have been made for her. I am not listening to the deafening sound of gut wrenching sobs or watching tissue boxes being passed. I am not choosing the song that will describe her life with me or her father. I am not worried about what I may have to wear when my eyes will try to drink in her every single cell for the very last time. I am not concerned about her father, who lives and breathes for his little pinks. I don't have to worry if he is coping or not coping or praying or not praying. I don't have to listen to everyone else's opinion of what should or should not be done. I don't have to do any of these wretched things. None.

But so many are doing that very thing right now. At this very moment, Mommies and Daddies everywhere have stopped breathing...at the exact moment that their baby did. Hearts freeze and minds bend. Some even break. Mommies and Daddies everywhere at every moment of this day have had to surrender the care of their baby to her Maker and trust that this really is what is best, though it is the absolute worst.

Too many Mommies and Daddies are trying to reconcile questions with no answers and looking for some solace in a time of complete and total shock. Too many Mommies and Daddies are having to explain Heaven to a two year old that was promised a new baby sister. Too many Mommies and Daddies are having to gaze at the rocker in the brand new nursery whose monitor will never carry the sound of a newborn's wail. Too many Mommies and Daddies will never, ever step foot into that nursery again. Too many Grammas and Grampas and MeeMaws and Peepaws and Nannys and PopPops will have to watch their babies bury their babies and never know what to say.

And all I say, over and over again is when? When will you come, Jesus? When will the suffering end? When will we finally see what we have been promised and when will I stop aching to be there?

When I am. When I'm there, I'll stop aching.

Until then, I will pray. I will pray for those Mamas and Daddies that are experiencing broken, shattered hearts and dreams. I will pray for those sisters and brothers that don't understand why they are still here. I will pray that Grammas and Grampas and MeeMaws and Peepaws and Nannys and PopPops will know what to say...if anything at all.

And I will remember. I will remember the dates of life...dates of death and moments in between that are never erased from a Mama's mind and heart. My calendar has too many dates of remembrance. It pains me to think that June is just around the corner and July follows too closely.

So I will remember, and I will pray, I will laugh, I will cry, and I will suffer when you suffer. And I will be grateful. Absolutely, uncontrollably grateful.

When No One is Looking...

2008-02-12T20:42:00.003-05:00

....someone is listening.

It's so funny that I've sat down at this computer and started five other posts, looking for that sweet release and excitement that comes when I am getting ready to purge some thought and ramble some obscure notion, and yet nothing comes. No, frustration comes when I sit, write three paragraphs and find myself parked in a cul de sac of my brain somewhere with no air conditioning and the windows fogging. If I was a writer, I think that's what would be my version of 'writer's block'. In my case it could be called 'parked in a hot car by myself'.

But tonight is different. I feel emotional and motivated. Emotivated. Versus emotional and unmotivated. I call that laundry. Heh.

Today is Edie's birthday. One year ago today I was holding a brand new girl baby Keefe. I'd done that two other times, but it was different this time...she was precious and pink and nameless. We almost called her Ruby because she was so red. And it took us three days to name her. I think it was almost as painful as labor. Everyone had a name for her and I was bound and determined that NO ONE but her mother would name her. So even if I liked the names being thrown from every corner of the world and every name book in the public library, I was too stubborn to accept any name but one that Alex and I had come up with. So there she was, affectionately known for the first 37 hours of her life as Afafa Ababu. I think that means Second Wife of the First Born in Swahili. Alex and I were looking through the "Baby Names of the World" book at that time. Then we 'stumbled' upon Jean (thanks, Syd) and I knew that would be her middle name....but the first was a huge question mark. I swear if I saw the lady from the birth certificate office one more time, I would have stuck with Afafa Ababu. ;)

I've always named the babies, thanks to my husband bowing out from his "I'm gonna name this one" campaign. He loves all of their names, though, and is grateful that his wife is a naming genius. ;) Anyway, we took home Eden Jean one year ago tomorrow and our lives are amazing with the addition of two more ovaries. Edie's had several nicknames throughout the last twelve months: Needie Edie, Meatie Edie, Edie Beedy, Weeeedie Edie (in the airplane swing in the back yard), Greedy Edie, Speedy Edie, and my favorite Sweetie Edie. She is a precious, happy little baby that loves and adores those big sisters of hers. And today she is One.

I decided that since her birthday party was Saturday and she already ate a piece of cake that was the size of her head, the girls and I made brownies. Bellies up to the counter, the girls were ready for mixing and pouring and I was ready, too. I was calling my Dad to wish him a happy birthday as well (thankfully, I NEVER have to get my Dad a gift for his birthday since she was born ;) and things were loud and crazy. My Dad and I were on the phone for a while, sharing our memories from one year ago that moment and trying to have a conversation over the screaming and yelling. We said our goodbyes and I hung up the phone to help the girls make some brownies. But I didn't. I accidently didn't hang up the phone. And Dad was listening.

Two raw eggs, 1/4 cup of milk, brownie mix, and 1/2 cup of veg oil. In a bowl. In front of a two year old and a four year old while a one year old (to the hour) screams bloody murder in the background. What happens next?

Charley grabs a handful of raw egg. Mama screams. Charley puts the raw egg directly into her mouth. Mama screams louder. Mama explains that raw eggs can make us sick (though I once heard Martha Stewart say that she has never heard of ANYONE getting sick from raw eggs). Charley says she's sorry. We continue the brownie making process and move on. I continue to tell the girls to keep their hands out of the mix and out of their mouths. Realizing that this is s MOST unrealistic expectation (especially as direct descendents of the Pasley family), I pull the bowl away and tell the girls to step down. Then I hear whistling. I glance over at Soph and she hears it too. She says it's the alarm. Then the phone starts that super loud car alarm wake-you-out-of-a-drunken-stupor noise. I go to the phone and call back Dad and ask him if it was him. He says yes and then I ask if he was whistling. He was, trying to get my attention to hang up the phone. We were both laughing so hard at how funny that whole thing was. Then he says...."what did she put in her mouth?" I was a little confused for a second and then I realized that I was screaming at my baby and he wanted to know what for.

I was instantly worried for what he'd heard. What did I say? Did I snap? Did I say something that was unfair or wrong or abusive in some way? Did I embarrass myself? Was there a word or intonation that would have disgraced me as a mother?

I'm not sure. I'm not sure if I said or did any of those things. But I certainly have. When no one was looking, there have been times in my life that I cringe to think of. I have embarrassed myself. I have embarrassed my family. I have embarrassed my husband. I have shown complete disregard for honesty, integrity, and truth. I have seperated myself so far from my true purpose that I lost all direction and headed straight for failure. I made decisions that had horrific eternal consequences. And most of that time, I thought no one was looking. I thought no one was listening.

And yet, Someone always is.

It is easy to put on the pretty face, to be wrinkle-free, to talk the super stay-at-home Mom talk. When there are witnesses, self control seems to be at its peak. When there are listeners, only good things are said. When there are eyes watching, the picture of me is retouched and that gaussian blur is softening those hard, cruel lines that are really there. But when I am "alone" the real me comes through as an impatient, loud, screaming Mama who always said she wasn't going to be that way.

And the lesson I learned tonight is that Yes, Julie, Someone is always listening.

He has listened to every bad thing you've ever said, and every sin you've ever committed and every F-bomb you've dropped in the church parking lot. And yes, He's also watched as you've tenderly held your seizing baby, and screamed out for His healing. And yes, He's watched you sin and grieved with you at the loss you were feeling from the space between you. And he's heard you scream "WoHoo" and "Halleleujia" at the top of your lungs in the middle of a church service for what He's done for His people.

So yes, He's always listening and He's always prompting. He's showing me that fearing man more than fearing Him has continual consequences for me. And I am praying tonight that I would hear Him whistle to me through the phone line of my life to say He is here, He is real, and He is in love with me. With or without the blur.

Boo Hooing.

2008-01-05T00:17:00.000-05:00

I didn’t mean for tonight to end up here, but it is. After a couple hours of blog reading and RTS research, I’m finding myself in tears in the light of this computer monitor. My girls sleep peacefully in the next rooms. Quiet permeates this home, though a foreigner, and I am left to my own devices. Unfortunately, that leads me to some sad places of wondering and wandering.

Tonight I think of Sophie and what the future might hold for her. I know that I am not supposed to go there, and that tomorrow has enough worry of its own, but it is a road that I that I travel more often that I should, according to Him.

I have four babies. I have experienced pregnancy four times. I have peed on a stick (and my own hand) and have felt the surge of adrenaline and hormones more times than I care to admit. I have lost my appetite, lost my waistline and gained four times the birth weight of my biggest baby. I have watched my belly grow and stretch and felt my back buckle under the heaviness of saggy flesh and soft bones. I found comfort in a plastic bag and roll of paper towels in the front seat of my van, and in Listerine breath strips that I prayed would destroy the evidence. And I loved it. Not all of it, but most of it. I loved my bare belly and would flash it to the most unsuspecting guests in my home. That was fun. And I probably could have charged admission for the freak show that occurred every night once I finally got horizontal in my bed. I think you could hear the theme to Jaws as the shark fins circled on the surface of my belly. I was the host of a precious baby. This precious baby was destined for the Keefe name. This baby was a custom job, made especially for me; for my body and my heart. The thought alone leaves me breathless. Oh, to be the Mama.

And this is my sorrow. For my precious little Sophie. I am grieving tonight for her.

Have I told you that we are surrounded by boys? We have made amazing friends here in Sunny South Florida…and those friends have lots of beautiful boys. We have spoken of arranged marriages and joked about what beauty the Lord would create through the combining of the two families. They are all beautiful and being raised in a Godly home to respect and adore women as God intended. It’s an ongoing joke about where the wedding will take place.

But I have to tell you that my heart has broken for Sophie. I’m not sure if we haven’t talked about Sophie marrying one of those boys for any reason…I’m not sure if it’s simply an oversight or intentional: other people might see that she may not be ‘wife material’. I just don’t know. But it still hurts.

I do know that I pray for Sophie to be swept off her feet by a man that will adore her and love her and a companion that will mirror Christ in his affection and care of her. I want her to be betrothed forever to that knight in shining armor that is destined for her. And I want her to be a Mama one day. I want her to feel what I feel for her…I want her to experience the joy and the pain and the saga of parenthood (of which I know very little). But from what I have read, RTS girls rarely have babies. That makes me so very sad.

I have a brother that aches for independence, companionship, passion, partnership and affection. I don’t know how many times I have heard ‘Guess what, Jule…I might have a girlfriend.” And he beams and that grin spreads far and wide across his face like any thirteen year old trapped in a 34 year old’s body would. He is precious. And lonely. And no one can make that different for him. I know his little sister can’t. I can trim fingernails and toenails, and offer him a coke, but I cannot find a wife for him. And it’s just not fair. It’s not fair at all. And I cannot bear to think that my little girl may have the same future. I cannot bear to think that she may not have the amazing yet agonizing job of finding the perfect dress or be destined to walk down the aisle to the man that will leave his family and cleave to her, or feel the relief and terror of knowing that that baby is coming soon.

When we learned that Sophie was genetically different more than four years ago, Alex would say, just think, she could be with us forever…we may never have to say goodbye. And my opinion of him changed completely. Just two nights ago, Sophie asked her Daddy to marry her. I don’t know what precipitated the question, but it was precious and sweet and I wish I could have taped it to hear it again. When her Daddy told her that he would be with her for the rest of her life, but couldn’t marry her, I wanted to cry. He told her that he was married to Mommy. Oh the lump in my throat was the size of Montana. Then she turned to me and asked ME to marry her. I said yes….I will marry you, Soph. And I meant it.

So I am boo hooing tonight. But like I said before, God has not given me the grace for this. Yet. And I will be thanking God for His mercy, regardless of what He chooses for Soph. My prayer is that one day I will be dragged from bridal shop to bridal shop in search of that perfect dress, calling Daddy to adjust the wedding budget, and that one day (much later ;))I will hear the melody of a crying newborn in the arms of my sweet and precious baby girl. And I will think back to tonight and praise the God of my joy, my sadness, my heart, and my hope.

Peanut butter and jelly sandwiches make me nauseous.

2008-01-04T14:41:00.000-05:00

I started this post weeks ago and here it is. We are now in Winter Break and thankful to be home for a while…

Today Sophie has been in Pre-K for over a week... I am freaking exhausted. Mentally and emotionally, physically and spiritually. I kinda feel like this:

Morally, ethic'ly , spiritually, physically positively, absolutely, undeniably and reliably….exhausted. Most of my life can be described by lines from the Wizard of Oz.

Last Tuesday we took Sophie to her first day of Pre-K. We did great. We went early, talked to her new teacher, and then left her smiling at a round table playing with some blocks. No worries, no tears. We were happy and heartbroken simultaneously.

Alex and I left hand in hand, got back in the Lexus and started back the 1.4 miles to our home. I was great. I was fine. No stress, no worries, just fine. Then Alex asked me if I wanted a cup of coffee.

For some reason, that brought on the emotional downpour. I thought hurricane season was over, but if you’d seen the giant tears rolling, you would think otherwise. This was a category five.

We don’t HAVE to get a cup of coffee. Says my sweet husband.

I’m not sure what started the tears, maybe the sweet gesture by my husband or the impending emotional flood that I just wasn’t ready to acknowledge.

We pulled into Dunkin’ Donuts, I pulled it together and I got my cup of coffee

I got back in the car and started again, telling Alex all that I was feeling...about how this would be the end of my mornings with Sophie, that Saturday would have a completely new significance, that Sesame Street will only be watched now by Charley, that Charley would be alone with no one to feud or fight with or share the last graham cracker with. This would be the end of sweet cuddly mornings in my bed, and staying messy-haired all day long. This is the last of the three girls and Mommy days.

This is also the end of the endless phone calls to the School Board. The end of wishing for play dates and school friends. This is the end of dreaming of her hand made projects and making little sack lunches for a four year old. I dreamed of those things. I ached for those things. I am living those things now.

But I cannot say that I’m not completely and totally devastated by this huge change in my life.

I remember after having Sophie and going to the commissary by myself. I had just had a baby. But no one knew that. I wanted to scream, HEY, I JUST DELIVERED A VERY SPECIAL BABY LAST WEEK. MY WHOLE WORLD IS DIFFERENT NOW. It was like I wanted other people to know that for some reason. And now I’m walking around with two of my three girls and I want people to know that this is NOT the whole picture. This picture is incomplete without that third little girl. And it just feels weird. For my friends who have had to pass their precious little ones back to Jesus, I ache for them. I think of them when I get my girl back at 12:45 every day…and they will not. Ugh.

Though I wished for Sophie to have time with buddies, and dreamed of having a little more time with my other little girls, I loved having her with me. I loved how different (yet the same) every day was. I loved just spending time.

And now our days are different. We are awake by 7, eating breakfast and getting on our clothes, shoes, hair and teeth brushed…in the van by 7:45 to make it to school by 8. Ug. Just thinking about it exhausts me. Twenty five hours a week away from me, Sophie is doing things that I have no control over. I don’t know what songs she’s singing, what snacks she’s eating, how she’s responding and interacting with those other little boys and girls. I don’t know if her teacher is calling her ‘Sophia’ or Sophie or Soph. I don’t know if her teachers are sensitive to her sensitivities. I don’t know if they know that she has personal space issues or that having the water running too fast scares her. Do they know that she loves music and that every transition we make happens with a song? Do they know that her feelings are hurt easily? Do they know that Sophie is leaving her little Cholla for the first time since they became best friends?

NO. No they don’t. But they will. They will figure her out soon enough. Until then, Sophie and I are growing. We’re growing up and making this ‘natural progression’ toward independence. But can I tell you it sucks?

Can I tell you that if I hear ‘natural progression’ and ‘she needs it’ one more time, I’m going to explode? Can I tell you that it completely rips me apart to have to prepare a lunch that goes into a box? Can I tell you how completely broken I am when I think of Sophie praying and blessing her food alone? It kills me that I don’t hear a ‘thank you mom’ from her. I leave her a note everyday. I write a little love note for her to let her know that it was me that made this lunch for her…that I am loving her from home. And I miss her.

So I don’t know. I don’t know how much longer I will feel these feelings and wonder if I am doing the right thing by taking her to school everyday. People have laughed at me and chided me for the tears. Some have told me to quit, most have told me to pray and that they are praying as well. Many have listened to my voice crack and allowed me to be the Momma that God designed me to be. I will be overprotective, overbearing, overemotional and head over heels in love with that little girl. And yes, I may be the only one that cries over packing a lunch box, but hey, that’s just the way I am. And for some reason, that’s the way it’ll be for now. Peanut butter, jelly, and Momma’s tears sandwiches…

THE first day of school...

2007-12-06T22:49:00.000-05:00

The Wall at Mile 11

2007-12-03T08:32:00.000-05:00

I woke 10 minutes before my alarm this morning. It was set for 3:30am. I had plans to meet with 4 other crazy people at 4:15 this morning. Those four other crazy people and I have been training for almost five months now for today. Today we will run 13.1 miles together. Today is the Marathon of the Palm Beaches.

Five months ago, with prompting from my neighbor, I went on a run with 5 other ladies. It was a short run, about 2.5 miles, I think, but at the time we were all huffin and puffin and looking forward to the end. I had just met Deborah, and had just recently moved in next door to Nicole. This was the first time I met Jill. We laughed and ran, ran and laughed and talked about our lofty goals for the Marathon. We made big plans for the night before, talking about dinner, getting a hotel, and then basking by some pool the day of the race. It sounded great, but in my gut I knew it was a long shot for me.

I am not an athlete. Maybe I should say I was not an athlete. I have never participated in a sport that I excelled at. Within the scope of competition, I crumble with the pressure of winning. So I found at a young age that my dislike for competition had a lot to do with the fact that I didn’t win. I couldn’t win. I just wasn’t made for sports. So I pursued a life of ‘sports encourager.” Translation: Cheerleader. Tee ball was the only sport that I was actually registered for. My parents learned early that spending money to have me play a sport was pretty much wasted. Being deathly afraid of the ball made it tough to enjoy any sport offered to me. Flying projectiles that could ultimately end my life did not excite me. What did was chatter. I loved the ‘hey batter’ and I loved screaming cheers from the dugout. Almost every year that I played tee ball I earned the coach’s award. This award was given to the most pathetic player on the team. That was me.

So I’m not an athlete…that’s ok. I fully embrace my uncoordination and inability to catch, throw, or slide. After realizing my talents were not in this arena, I chose performance. This was perfect for me. No competition, no nerves, just smiling and dancing. That worked much better for me. Aside from the occasional costume breakdown there were no flying projectiles in dance. So that’s what I did. I cheered and danced. For my whole life.

My best friend Kirsten is a runner. She is one of those fleet feet who just runs and runs and runs…and she’s good. I tried running with her a few times in high school. Ugh. That was terrible. Though I didn’t like competition in some ways, I was a slave to it in others. So even running with her sent me into compete mode. If I wasn’t as fast as her, I was discouraged. If I’m not good right now, I’m done.

So yeah, I was excited talking about this race that I wasn’t going to run and all of the exciting stuff we were going to do together.

The training was great. I realized quickly that there was more than one benefit to preparing for the race. I got to leave my house by myself and go spend an hour or two with girls. Great girls. Girls who loved me. Girls who loved God. Wow. What a gift.
So we would meet. Sometimes once a week, sometimes twice. Sometimes none. We’d love to do our beach run. That was the group favorite. We learned about protein shakes and Glutamine. We drank lots of water and ate gummies together. We huffed and puffed together and had some of the best conversations ever. We shared each others’ burdens and lifted each other up in prayer.

The entire month of October was crazy for me, so my training time was extremely limited. I took a 5 week break from training. This was not intentional, but necessary and I’d told myself that I pretty much eliminated any chances for running in December.

Then I got a call from Jill asking me to run with her and Lauren and Miss Mary, Deborah’s mom. She told me they were doing eight that Sunday and I just didn’t think it was possible. We ran ten that day. Ten. Ten miles. Me. Ten miles. How awesome. And the best part of that whole day was my girls. The endless conversations that invited the Holy Spirit to share a pair of New Balances were amazing.

I was back on for the race, and determined that I would pursue the training program with the ladies and do whatever they did. I registered for the race. I bought new shoes. I made time to run. I had a few conversations with my knees, ankles and shins and told them to behave. They did. I was injury free at the start of the race yesterday. It was all good.

What a blessing to be pursuing this goal with people that I could trust. People that accepted me, embraced me, encouraged me and pushed me. And that was what I needed at mile 11.

As a group, we never split in training. We always stayed together. Our motto: Leave No Mommy Behind.” So at race time, when adrenaline is up and bladders are strangely active, stopping to go pee caused a little issue. Jill first, then Deb, then me. What a painful process that catching up is. Painful and exhausting, but once I saw those white tank tops with the words “POWERED BY PRAYER” (which many runners appreciated as well) I was instantly comforted and thankful to be back with my buddies.

So much of my life operates exactly that way. When I have stopped running and stopped pressing on and pursuing my life with Christ, and I am stopped on the side of the road watching all others pass me by. I am alone and wandering, and wondering when I will make the decision to jump back in with the stream of believers to run this race that is before me.

He never intended for us to be alone in this. I never would have imagined for a second that running alone in this Half Marathon would be better than being with my friends. At mile 11, if Deborah hadn’t said, “let’s stop complaining and pray”, I would have been moaning and groaning the entire time. But her exhortation comforted me and challenged me to just keep running. And in the silence of mile 12, when we were pushing as hard as we could, we just kept hearing Jill. She just kept saying with this giant smile on her face “We did it!” “W E D I D I T!” “Can you believe WE DID IT?” It was incredible.

And we did. We kept running, and we crossed the finish line. Together. All together, we crossed the finish line with smiles and screams and hugs. It was amazing. We did it. We did it all together. We left no Mommy behind and we pressed on for 13.1 miles.

So will I do it again? Will I try to run this far again? Running a marathon is kinda like having a baby. If people ask you within 24 hours if you will ever have another baby, you say, “Are you kidding me?” But wait a few months and that answer might be different. Same for me…wait a few months and ask me then. My answer may be different. ;) Then ask Alex if he’s prepared as well.

So we are done now. Our only goal was to finish and we did just that. At a pace of 10:55 and time of 2:23:00 (Deborah actually beat us all at 2:29:59 by a shoe), we finished the race together and we can all say:

“I have fought the good fight, I have finished the race, I have kept the faith.”
2 Timothy 4:7

For Whom the (School) Bell Tolls

2007-11-29T01:37:00.000-05:00

Today was the last Wednesday that I’ll be sweetly awakened by a four year old saying…

Say a prayer, Mommy….say a prayer….

This is the way Sophie wakes me every morning. Just before we roll out of bed after a little cuddling and hugging, we say a prayer to thank God for the day that He has given us and to ask for help getting through it. Sophie knows that as soon as the prayer is over, we will roll out of bed and proceed to the kitchen for her favorite meal of the day : breffess.

I say this is our last Wednesday because Sophie will be starting school on Monday. On Monday, she will be starting Pre-K. On Monday, I will wake her, dress her, feed her, buckle her into her carseat, and drive her to her very first day of school.

Gulp.

As I sit here with tears welling, I find it hard to believe that I have been fighting for this for almost a year now. Endless calls to administrators, counselors, psychoeducational therapists, pediatricians, teachers, school secretaries and eventually my local area representative have been made for the past nine months. Most of them telling me to wait it out, we’ll see what we can do, give us a call back Monday, her evaluation is scheduled. I hoped that Carmen (the secretary at Child Find) didn’t have caller ID because I blew up her phone for 9 months trying to move things along.

In the beginning, my calls were hopeful. After the fifth month, they were mostly angry and tired. So I decided to pursue a private facility. I called a service named “Family Central”. They were incredibly helpful, sending me twenty-six pages of local pre-schools and childcare facilities that would take special needs kids. I called every one. Every single one wouldn’t take a four year old that wasn’t potty trained.

Meanwhile, Charley is potty training and getting it. She is successful and proud. And so am I.

Yet I grieve.

I thought I was past the ‘missed milestones’ chapter. Sophie is walking, skipping, jumping, running…Sophie is verbal and talkative. Sophie is riding a tricycle!

So to have someone tell me that she would not be accepted for this reason….this hurt. This hurt badly. I remember thinking…if they only knew her…if they only knew her they would take her. Give us an audition…let us try you out for a couple of days..you’ll see, she’ll be fine….if she needs her diaper changed, just call me…I’ll be right around the corner, I swear.

But no one does. In four year old pre-k classes, there is no running hot water. According to state regs, there must be running hot water in any classroom with children with diapers.

I made about three calls at a time. It was too frustrating to hear that she would not be accepted more than three times at a time. Too hard and too emotional.

Meanwhile our precious friends are going to school and coming home with beautiful artwork that can only be produced by the hands of a four year old…and with their stickers that tell us what job they had in school that day: LIGHTS or LINE LEADER or SNACK HELPER. It was so sweet to see those little stickers. I was so excited for them…and anxious to get Sophie to be line leader. That was ALWAYS the best job, wasn’t it?

So the pressure became greater to potty train and to try every method available. But she just wasn’t (isn’t) ready. And I had to come to terms with that…and I had to continue to remain diligent in getting Sophie the best services possible.

I kept calling, and finally, one day, Lo and Behold, I dialed the right number. I spoke to a woman who initially rubbed me the wrong way, and made me feel like I was being selfish to be advocating for my child. By the end of the conversation, she was telling me that she would be making a couple of phone calls…oh thank you, thank you so much…

The ball was rolling. The county scheduled an evaluation. We went in at 9:30am for psychoeducational assessment. Soph had to answer lots of questions. When she knew the answers, she’d shout them out, proud as pie. When she didn’t, she’d bust into her rendition of the ABC’s. The examiners were in love with her within the first ten minutes, saying “She is so charming,” and “What a character.” I guess the apple doesn’t fall far from the tree does it? ;)

At the conclusion of the exam, we make the appointment for her follow up. There they will determine which, if any, services she may need.

Fast forward: November 13. The entire family packs up and drives to Central Area Child Find offices. We are so excited. We hope to hear that Sophie will get services. We discuss the results of her testing..they tell us what we already know..kinda. They tell us she’s delayed in life skills, but above average for social skills. No kidding.

So what does this all mean…I’m waiting with baited breath for the word “placement.” We finally hear it. They are recommending Sophie be placed at the ESE Pre-K class at the Royal Palm School. I am so excited and so emotional. I keep saying to myself keep it together, Julie…keep it together…keep it together… And I do. I am fine. I give the group a big Julie style WOO HOO and I am so excited. They continue to tell me about the class and then they drop this bomb on me.

“Sophie will be eligible for transportation if you would like her to ride the bus.”

And that my friend is where I lost it. Sophie watches the bus go by our house everyday. She asks if one day she will ride it. I am crying…Daddy is vaclempt…the case worker is choking up…we are thrilled. Alex apologizes for my crying with his "I'm so sorry you had to see that" joke. Sophie comes over and asks my why I’m crying. I tell her I’m happy. She looks confused. The speech therapist hands me some tissues and Sophie wipes the tears from my eyes and tells me “Iz okay, Momma.”

It is. It is okay. It’s better than ok. We’ve been waiting for this forEVER it seems.

And now it is just five days away. It is so bittersweet to think of her riding off to school (the buses have car seats) without me. And I don’t think she’ll be riding the bus for the first couple of weeks. I think it would be a little too traumatic for me. I’m a lightweight.

I know that other Moms have experienced this. This feeling is not exclusive to me, Julie…Sophie’s Mom. I know this because I have some very special friends that have offered to meet me for some Starbucks therapy Monday morning.

So when the bell rings at 8:00am Monday morning, please pray for me….pray that I would have confidence and peace. Pray that the chunk of my heart that goes to the Royal Palm School on Monday will be safe, happy, and loved. Pray that the time for Charley, Edie and I will be sweet and safe as well.

And pray that I will remember that this was what I’ve wanted all along…a backpack, a lunchbox, and the little girl that will carry them home.

My Little Middle

2007-11-12T23:34:00.000-05:00

No, the title of this post is no reference to my midsection, though I wish it was. Three babies later and I’m not sure if it ever will be. But I digress.

I want to tell you a little about Charley. It seems that since I’ve started this blog, my life has been consumed with being Sophie’s mom and I don’t want anyone to think that even for a second my heart bleeds any less for my precious two other girls that I am raising here.

Charley is an amazing little 2 ½ year old girl that has me wrapped. Growing up the younger sibling of a boy with special needs, I have walked the same steps that Charley has. I have been the younger sister that learned things a little faster, that understood things a little better, that moved through specific tasks a little quicker and with less frustration. My heart breaks at the memory of finding more Easter eggs than him and learning to be sensitive the next year around. And much like me, Charley has become an amazing little nurturer. I am never surprised when I hear from the living room “Oh, iz okay, sweehart.” Charley is usually comforting someone or encouraging them, coddling them, or giggling with them.

She is the big sister to Edie. I am always impressed when I hear squeals coming from the kitchen where Edie and Charley are sharing a blanket. It makes me stop and smile, say a small prayer of gratitude and bask in that feeling of satisfaction in my existence.

Immediately upon waking, Sophie and Charley march into my bedroom. Sometimes they are together and sometimes they are separated by a few minutes. The other morning, Sophie started her day earlier and was sleeping tucked under my arm. I heard Charley come in, marching along, when she came to my side of the bed and was saying

Sophia….Sophia….

Rewind two days. I finally decided to clean out from under Charley’s bed the cornucopia (remember this word ;)of junk that had been accumulating for the last couple of months…I reached under the bed to grab what I could reach and my hand tore into the nastiest, wettest, mushiest mess I have ever felt. I was terrified to think what it could have been. I lifted the mattress to find a tiny little rotting pumpkin (thanks, Shelly ;). It was horrible and disgusting and nauseating and green, but I got over it. The point of this little tangent is to tell you that in lifting the bed from it’s spot, we found a little rubber green alligator that we have been looking for for WEEKS. Literally. This alligator has been everywhere with us and is a favorite toy for both of the girls (Edie likes it, too). Needless to say, we were ecstatic. There was a huge explosion of thank you, mommy!s and YOU FOUND IT?!s. It was awesome. We were all so excited. Soph slept with the aowgator that night and has carried it around since.

So in comes Charley (Cholla as Soph calls her), marching in and as softly and sweetly as you could ever imagine says

Sophia, I found you alligator…here you go….

Sophie says Thank you, Cholla.

Alex and I both melt at her consideration for her older sister and how this just comes so naturally for her. What an awesome feeling..

This week Alex peeked in on the girls before a long bike ride down to the beach. Kissing each girl on the cheek, Charley responds with

Be careful, Daddy.

Oh boy, so sweet. What a lover.

The stories could go on and on about Charley…about how much she has taught me as a TDK, and how much I still have to learn about being a Mommy to twins born 22 months apart. I am so thankful that Charley is who she is…she is stubborn and willfull, yet funny and compassionate. She loves making people laugh and aches for smiles and giggles from Edie. “She not laughing, mama…” she says with a frown. She is a pleaser and a cuddler and she is in love with her sisters. She is my happy girl who jumps at any empty lap and abandoned blanket. She is agile and tough, often taking a thrown elbow to the side of the head from her big, or a nice eye gouge from her little.

Charley has taught me that I CAN potty train my children, that I DO have enough counter space for her tiny little teezo, and that I AM so beyond blessed by having her as my sweet little middle.

2007-11-06T00:26:00.000-05:00

As part of a presentation in my college course "Introduction to Mental Retardation", I read this poem. I had no idea that ten years later this would be a perfect description for my life with Soph and one of my very favorite writings. Since I have just joined a new family (parents of kids with RTS), I am finding that this new diagnosis has brought me peace. I am visiting Holland again, but in some ways this feels like the very first time. I am so glad to be here.

Welcome to Holland
-Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

My New Mantra

2007-11-03T13:24:00.000-04:00

So I have thought and thought about how to start and share this last three weeks with everyone and I just cannot find the words that would begin to describe what life has been like.

Before I thought that if I take time to sit and write that I would get lost in grief and fear, so I’ve been putting it off (much like the rotting piles of laundry in my garage). That is mostly how I confront most of my fears. Pile them up and put them in a basket somewhere and walk around and over them until something like a late fee urges me to go through the pile and sort and purge.

Three weeks ago, Sophie’s neurologist from the Dan Marino Center called us to say that our Microarray Genetic Testing results were in and that an abnormality was found. Of course, I thought…we knew that. I said with confidence “On the 5th chromosome, right?”

No, actually on the 16th.

You know how in movies when something dramatic happens and the camera pans from way in the distance to a super close up of the actor? That’s exactly what I felt at that moment. At that very moment, my mind froze, my heart seized and my stomach flipped. At that moment, what I felt almost exactly four years ago was duplicated. I was frozen. Too frozen to ask any questions of the doctor. Too frozen to even remember anything of the conversation past that moment.

So, immediately upon hanging up (if I did at all), where did I go? You guessed it. To the oracle of all wisdom and knowledge…the altar of medicine and science…the finder of all bad news in creation…GOOGLE. There was a part of me that said, No, Julie…don’t do this…don’t do this to yourself…you don’t know anything yet. That part of me was God in the form of His Holy Spirit that guides, corrects, and comforts me. And yet, about 85% of the time, I don’t listen. I don’t know why…but I just don’t listen. The other part of me (pride) said that I should know as much as possible. Knowledge is power. I am her mother. I need to know more than anyone else. What a crock. What a lie from the enemy of my soul. Sounded good at the time. Don’t most messages from the adversary?

So I googled “Chromosome 16” and came up with all kinds of horrific information. I learned that many anomalies on the 16th chromosome cause terminal childhood cancer. I read that these sweet children die in infancy, that abnormalities on the 16th chromosome are incompatible with life. Oh my God, no. Oh my God…no….please no. After a trip to the bathroom, I got on the phone to call Alex right away. He just kept saying what? And I just couldn’t stop crying.

This went on for about 8 hours. I slept with Soph that night, thinking that I just cannot imagine my life without her. That God must be preparing my heart for her demise because He’s put me in contact with so many people who have lost children. I recently came upon a woman who is losing her second child to AML related cancer. Her last name is my maiden name. I read blogs daily of women who are daily dealing with the losses of their sweetest gifts. One of my very best friends in all of creation lost her son 2 years ago and I have watched her walk the longest, hardest, road I’ve ever seen. Tears from a mother who has lost a child come from somewhere I never want to be. And they come from the deepest part of a human that only can be accessed by the most horrible experience ever. Losing a child. Anything but my kids, Lord….anything.

So I finally walked away from the computer and started making phone calls. Phone calls to people that I would trust with my life. And hers. People that I knew would cry with me. People that would bawl and squall with me…and let me do that. And not tell me everything was going to be alright…because neither one of us knew that. My eyes are burning just thinking of their generosity and selflessness. Thank you, Stace. Thank you for the prayer that grounded and centered me for that moment. It was priceless. Thank you, Lisa for the love you have shown me in tears and grief that I have never felt. Thank you for loving my little Sophie like she was your own….oh...

Gulp.

That was Tuesday. I had a wedding to plan. Eighty+ people were coming to my home Saturday for a wonderful celebration that I had to pull off. I had a bathroom with no toilet, and I don’t know how many half-finished projects that needed to be done before Saturday. Thank you God, for the ultimate of distractions. Time to work.

So we did, and we made it through and we looked at everyday a little differently. I stayed off the computer and I prayed. I prayed and prayed and prayed. And I cried. I cried and cried and cried. I cried at everything. Every hug Soph gave to Charley, every smack she gave as well, every new word she said, every time she rang the new bell on her bike, every time she came over and placed her cool little hands on my cheeks to get my attention. Every time she screamed in frustration or giggled with laughter or everytime she growled like a lion or sat quietly with those two fingers watching ‘Mizza Rawjah”. These moments are engrained. And each bittersweet. I tried really hard not to think ‘what if’ and tried to think of all three of them in the same boat…we don’t know anything past tomorrow for any of them.

But worry has a way of being clever. It sneaks up on you. Kinda like that black spider thing from Spiderman 3. Remember that thing? It would kinda sneak up and stick and then before you knew it, it made a suit out of you. It becomes symbiotic…it needs you to survive. I think that is was is so clever about the enemy. He uses your own creativity against you. I have a great imagination and all it takes is for him to plant a very small thought that in time completely engulfs my entire being. So I walked around with that black spidey suit under my clothes for thirteen days. Instead of throwing webs, though, I cried tears and took lots deep breaths.

Very few people knew what was going on…I vowed not to tell anyone that didn’t believe that she could be healed. I mean REALLY believe that she could be healed. I didn’t need anymore fear to stir up the enemy. I didn’t need my family or friends walking around in black spidey suits under their clothes. I needed to be still and quiet. And that is what I did.

My new mantra is “God is Bigger Than Google.” Copywright pending. ;)

Fast forward to Tuesday, October 30. Finally, our trip to MCH to see Dr. Jayakar. I knew that that day I would either be getting the worst news of my life or the best news of my life. I think that I was ready. I had a peace about the whole situation that felt vaguely familiar, that peace that surpasses all understanding…I’d felt that before and it was with me. He was with me.

We see an abnormality. It is on the 16th chromosome. It is a deletion. Every cell in Sophie’s body is missing a piece of the petite end of the 16th chromosome. We have a name for this. It is called Rubenstein-Taybi Syndrome.

Ok.

We talk about how initial tests were wrong…. We talk about why more tests weren’t done…

Ok.

We talk about what makes her different.

Ok.

Ok.

What does this mean for her future? Alex asks if she will be able to be married one day. I thought that was a funny question, since that is his greatest fear for all of the girls. He keeps telling the girls that they will marry Jesus. He keeps telling me we’ll get a house near the convent that they all reside in. What a trip.

This is not a progressive disorder. She will not regress. She will be the same at 14 that she is at 4. Touch wood. Alex and I loved that part.

Wait. Did she say 14? Oh Lord, did she say 14! Yes! She said 14! Yes, God! She DID say 14! Man, what a cool thing….to allow myself to see Sophie at 14 and beyond. I have, but wondered. Now I really do see her there, and I am so grateful.

We will schedule a renal ultrasound to make sure her kidneys are okay and we’ll keep an eye on her.
But what about the marker for childhood AML? Is this related?

No. My other specialty is with onco-genetics. This is not something to worry about.

Oh, thank you, Lord. Relief. None sweeter.

So do I cry now? No. Remember that peace I talked about before? It won’t let me. I’m just satisfied. Completely satisfied.

They take a sweet picture of Sophie (one of the best ever - see above). I start reading the packet on RTS that Dr. Jayakar has given us. I take the diagnosis sheet and we head for the car.

We walked in with the same Sophie that we walked out with. Same girl…we just know a little more about what her insides look like. We know that she has a giant big toe for a reason (adorable…tough to buy shoes, but adorable), that big thick eyebrow is more than just a gift from Mom, that the sweetest place for me to kiss her (since the day she was born) is on the bridge of her nose that is just a little wider than normal, and that Sophie will never have ‘hat head’ because 95% of kiddos with RTS are born with microcephaly.

So our next step is a renal ultrasound to make sure that Soph’s kidneys are developing normally. We’ll probably have some cardiac and respiratory testing as well.

So nothing has changed. And everything has changed. We are more determined than ever to find the most help for her, and the best and most appropriate therapy. We have so much to look forward to. Everyone wants great things for their children. Alex and I both want full lives for them. Abundant lives that aren’t measured by dollars or cents or degrees on the wall or carats. Abundant lives that are measured by smiles and nights spent in sweet, restful sleep and with people who will love them as Christ loves the church. That is abundance. That is possible. We know it.

So thank you to those who will go and research Rubenstein-Taybi as soon as you’ve read this. Some of you didn’t even wait to get to the end of this post. Thank you. Thank you to those who hardly know me and yet carried me (Best Small Group in the World). Thank you to friends who cried with me and prayed with me and aren’t afraid to approach that throne of grace with me on your back. And thank you to those who are going to read this and storm the gates once again and again and again for our Sweet Sophie and her sisters. Bless you all. We love you. We love Him.

As we know more, we will keep you updated. Until then, we know that the prayers of a righteous man availeth much and we are counting on you. Keep it up, brothers and sisters.

Did I Say That?

2007-11-01T13:02:00.000-04:00

You know, if I would just sit down for two seconds and realize that you people (if there are more than one of you reading this) don’t care if this is good or not and perfection is really NOT attainable in this world, I think I would actually benefit from finally taking some of this obsessive thinking and putting it down on paper for my OWN good, not anyone else’s.

After reading a couple of old days out of my prayer journal this morning, I realize that my very best writing, writing that sounds so much unlike me that I look for quotation marks, is the writing I do to God. My conversations with Him are always so very sweet when they have aged a couple of weeks. It probably takes that long (at least) for me to start seeing that the pruning going on at the time is starting to yield some fruit.

This morning, I turned back to earlier this month when I was reading out of Samuel and got this verse:

“But if you do not obey the Lord, and if you rebel against His commands, His hand will be against you as it was against your fathers.”
-1 Samuel 12:15

And this was my note to Him that morning…

Dear Lord,
The very last thing I want is to be on your bad side. I know what it is like to feel disappointed and frustrated at my children and their rebellion – I can’t even imagine how you feel about mine.

Though it is painful and torturous, being separated from you because of my own sin only teaches me how much I miss you and how much I desire being with you.
And missing you isn’t like missing anyone here. Missing you is like tearing out a critical piece of me and setting it down on the nightstand. I walk by it and I feel a pang of grief for its loss, and I limp away knowing that walking is only possible after I’ve decided to show up for rehab with you.

I shudder to think of the days I have purposefully put you away, set you aside and said “I’ll get to you later.” I am so sad for that.

But when I sin against you, that pain is even more intense and the loss is even more disabling. Not only do I have to live with regret and remorse and natural consequences, I have to deal with the supernatural consequences to my selfish ways and rebellion.

The natural consequences and heartbreaking and usually affect the people I love dearly. The corners of my sin stretch far and wide and can visit me for days, weeks, months, years, decades later. I know you forget them, by the world and the enemy do not.

But my supernatural consequences are isolation and loneliness and separation from the one source of true happiness and fulfillment. The one place that can bless or curse me. The only one that can see my hurts, concerns, and fears and quell them with a breath . The only one who knows my passions, desires, who know what really floats my boat and delivers me from the perfect storm that is life.

So, in my sin, which happens daily (if not hourly), I am a sick, sad, afflicted one. But in You, in redemption and salvation, I am not only healed and happy, I am full.

Help me to remember that today when life here has chop blocked me and I have barked back, when regret and remorse visit my head in a bad memory, when shame and sorrow try to reside in my circle of thoughts, allow me to see your gentle hand lifting me out of the miry clay and placing me on the comfort of my new, true identity in You.

You are precious, my God. Thank you for being with me today and hearing my prayers.

I love you,
Julie

The Fuchs are Home!

2007-10-25T01:38:00.001-04:00

Thank you all for praying....Joy, Brian and Ansley are HOME after a long 6 week hospital stay and much praying. Joy had to have a hysterectomy in order to save her life. Please continue to pray for the family. God has a way of teaching us all humility and gratitude, doesn't he?

Coveting Your Prayers

2007-10-17T00:38:00.000-04:00

Please pray for our dear friends, Brian and Joy Fuchs who are welcoming their precious little Ansley Elizabeth tomorrow. Joy has a placental disorder called increta and is undergoing very risky surgery in order to bring Ansley into this world. Please pray today for order and healing during the entire process. Thank you, friends.

Call Me Crazy

2007-10-11T23:48:00.000-04:00

From now on you are not strangers and people who are not citizens. You are citizens together with those who belong to God. You belong in God's family.
-Ephesians 2:19

1979. That is the date stamped on the toilet in the girls’ bathroom in my new home in lovely Lake Worth, Florida. We have started remodeling this bathroom since we have a wedding happening in 9 days. Yes, nine days from now, I will have 80+ people in our backyard and that means that we could potentially have our toilet flushing hundreds of times. So, because I have amazing friends (Stacy and Brady)who care enough to keep a toilet, vanity, medicine cabinet and mirror in their garage for two weeks, I am remodeling my bathroom! Real friends share toilets. That would make a nice kitchen magnet, wouldn’t it?

Following a white Lexus packed with four of the most beautiful people on this planet, I was able to listen to music all the way to Orlando by myself. Loud music. Great music. One of my favorites since my glory days at KGNZ has always been MercyMe. Always speaking to my heart and pulling me back to Abilene, I can listen to these CD’s til my head hurts and my heart breaks.

Crazy: Mercy Me
Why I would I spend my life longing for the day that it would end..
Why would I spend my time pointing to another man..
Isn't that crazy

How can I find hope in dying, with promises unseen..
How can I learn your way is better
In everything I'm taught to be..
Isn't that crazy

I have not been called to the wisdom of this world..
But to a God who's calling out to me..
And even though the world may think
I'm losing touch with reality
It would be crazy
To choose this world over eternity

And if I boast let me boast
Of filthy rags made clean
And if I glory let me glory
In my Savior's suffering
Isn't that crazy

And as I live this daily life
I trust you for everything
And I will only take a step
When I feel You leading me
Isn't that crazy

I have not been called to the wisdom of this world..
But to a God who is calling out to me..
And even though the world my think
I'm losing touch with reality
It would be crazy
To choose this world over eternity

Call me crazy
You can call me crazy
Call me crazy

I have not been called to the wisdom of this world..
But to a God who is calling out to me..
And even though the world may think that
I'm losing touch with reality
It would be crazy, It would be crazy, It would be crazy
To choose this world over eternity

Isn't That crazy..
Call me crazy
You can call me crazy
Call me crazy

Oh, how I LOVED listening to this song the other day. So much so that I hit repeat twice and cried through it each time.

Hearing this song this month, this week, this day was completely divine. It’s been as early as three days ago that I have had that ‘crazy’ feeling that maybe the pursuit of who I call God has been a little overboard. Maybe it’s because I sometimes feel like a foreigner because of my faith. Maybe it’s because it’s taken us ten months to find a church family and people that don’t think that we’re crazy or have taken this ‘bible thing’ too far.

I ache for heaven. I literally hurt for that place that will bring peace and contentment once and for all. I remember mentioning to a family member that I couldn’t wait to get to Heaven and they looked at me like I just ran over their dog. They had that ‘how could you’ look on their face and immediately I remember feeling awkward. But I knew how I felt and what I meant. I was completely serious. Lately I’ve wondered if I was crazy for my desire to ‘go home.’ But then I hear Bart and remember that this is natural. This is more natural than the new gray hairs at the crown of my head. This is right, and I am convinced that my desire and pursuit of God in my life through his Son, Jesus is just what I want. Nothing else, nothing less.

I ache for Heaven because my father is there. My home is there, and my baby is there. My citizenship is in Heaven and I cannot wait to finally experience the place where there is no more faith, as AP says.

But until then, I have to do this thing called Christianity, regardless of the pressure and regardless of how strange I might seem to others, or how I might feel like an outsider, I have to continue to keep listening to the God that is calling out to me. I have to continue to remember that I must do everything I do for His glory because He has changed me. When I try to do differently, my insides twist and I feel phony and fake and false.

So when I hear comments that make me feel like two nights a week at church are irregular or that my prayers are too long or that our financial support of our church should be reconsidered or that we are in some way losing touch with reality, I have to remember that the truth, my reality seems foolish to most.

I also have to remember that it is He alone who has transformed and healed me. He has taught me and gently guided me and carried me through nights where I thought I would stop living simply from sadness. I have sensed His smile as I’ve realized His hand in my business and I have felt his disappointment after making one foolish choice after another.

Sometimes I paint pictures of Egypt, and I wish that I could just relax; that I could stop that conviction, that I could hush the Holy Spirit (can I say that?), but I know that there would be no freedom in that, only the prison of fear and consequence.

So I will remember today that my homesickness is okay. I will walk in quiet, confident craziness, knowing that Jesus himself is waiting for me and planning my homecoming.

Call me crazy.

Post Script: The bathroom is coming along nicely. Updates and photos to follow. ;)

Praying for Hope

2007-09-30T01:37:00.000-04:00

The Lord is close to the broken-hearted and saves those who are crushed in spirit. -Psalm 34:18

“No babies in Mommy belly….she here!” That is what I heard out of Sophie’s mouth every day for months after Edie came to be with us. She’d say it 6 or 7 times a day, acknowledging where little Edie came from, and that we were finally celebrating the arrival of a new baby sister. There were several things that we looked forward to when the new baby came to live with us. Sophie looked forward most to her carseat being moved to the ‘way back’ of the minivan and sitting like Katie in the back seat. She was ecstatic.

Three days ago, she said it again. It had been a good couple of months since she said it, but this time, my eyes burned with tears and I found that familiar grapefruit residing in my throat. You see, three days ago was the three month anniversary of Miller Grace’s first day in Heaven. When Sophie said it again, I thought of little Hope, Miller Grace’s biggest sister and biggest fan.

You see, Sophie is still celebrating Edie’s arrival, though it was almost eight months ago (my, how time flies). She is still thrilled about having her here and completely overjoyed to watch her grow. This warms and breaks my heart simultaneously because I know that little Hope is grieving the loss of her little sister. Knowing that the day Sophie decides to celebrate Edie with her sweet comment of gratitude was the anniversary of Miller’s homegoing, I was completely broken for the Cassettys and I wanted to cry and smile at the same time.

Tonight, I am writing so that you may take a moment to call upon the name of Jesus on Hope’s behalf. She is a precious four year old that has had to endure the greatest disappointment. We cannot fathom the confusion and grief she must be feeling.

Please ask our God to be gracious, to be present, to be alive, to be real, and to be comforting to Hope. I am praying that God would just give her peace and stillness and that he would restore her joy.

Please continue to seek Him for Emily and Matt and Matilyn as well. We love them all so much…

Loving the Skin I’m in?

2007-09-29T01:29:00.000-04:00

I start this tonight sitting on the couch on a Friday night at 11:24 watching ‘Praise the Lord’ on TBN. Funny, I never imagined that this would be my Friday night. Ever. My thought tonight is how many Friday nights have I wasted NOT watching PTL on TBN. How many Friday nights have I spent pursuing anything even close to relationship with you. Too many to count…so many that my stomach turns.

Starting next month, Alex and I and the girls will have been in Florida for a year. It is hard to imagine that this has been 12 months…when sometimes it feels like 12 years and sometimes it feels like 12 days. We are so grateful for what we have here, loving family, friends and amazing weather. But I would be less than honest if I said that we’ve been ‘loving every minute of it’.

Tonight I realize the depth of pain and separation I am feeling. I have known from the beginning of my walk with Him that I have never been more comfortable in my own skin than when I am holding His hand and walking closer to His sacrifice for me.

So after twelve months of trying to do what I think will make me more comfortable, I have come to the realization that my everyday life is so messed up and so very uncomfortable. Counting on friends and family to fill a void only inhabitable by my holy, perfect Father leaves me empty and sad. Trying to be perfect, trying to look perfect, trying to sound perfect is getting me nowhere but spiritually and physically bankrupt. I am tired.

I remember the days of spending hours in your Word. I remember looking to your word for strength, serenity and assurance. I remember spending time with my brothers and sisters in prayer daily. I remember purity being a priority when now it is an afterthought. I remember being broken before your broken body, and thinking that the Eucharist was the most profound and amazing experience….how could I ever not be moved. Well here I am.

I am lost in myself. I am lost in busyness and distraction. I am lost in my family and our issues. I am lost in my marriage and my children. I find myself carrying anger and resentments around like badges. I have forgotten the Julie that you have created for a specific purpose and plan. I have forgotten that you are about forgiveness and that you require the same from me. This veil of me has clouded the light that is supposed to shine through.

I am not here to seek and save the lost. That is why Jesus was here. The weight of the responsibility for salvation does not lie on my shoulders, but his. Those nine inch nails were his choice, not mine. I cannot be you, Jesus.

But I cannot be me without Him. I cannot be me without the revelation of him, without the substance of his presence. I cannot be me without His truth that has become my personal truth. I cannot be me without what He is. I cannot be whole without the one piece of the puzzle that stays the same, unchanging and stable.

So tonight I am realizing that there are too many ‘Julies’. That I have tried too hard to be too many different people, that I have done so much disservice to His name because of my wavering commitment to His name. Tonight I am realizing that I must spend more of my time and energy on getting to know Him and His Word better. I am realizing that my life depends on it. My relationships depend on it. My kids and my marriage depend on it.

My prayer is that I would be free from the obsessive thinking, the storm that can drown out the smiles of my children and the joy that you have gifted me with. My prayer is that I would be free of the fear that entangles me and plants me in a place of isolation. My prayer is that I would know Him as I have in the past, when I was walking on the smooth, stable rock that is Christ.

Twelve months has changed me, just as twelve minutes could. I have had breakthroughs and break downs. I have become a first time home buyer, moved my family, changed jobs, experienced the loss of a sweet grandfather, had a(nother) sweet baby girl, walked through my mother’s cancer diagnosis and treatment, and too many other insanities to mention here… and I am still learning what it means to be His.

I am still thankful that He has not given up on me…I am still praying that I would give up on seeking the approval of others over Him, that I would learn that I will never know true satisfaction on this planet outside of His will for me and that I would embrace truth without fear.

Here is to another twelve months at Vespasian, where I can watch TBN on Friday nights, choose joy, rest in His love, embrace my adopted family, pursue truth and transparency, and live for His word…all at a balmy 82 degrees. ;)

Operation Deep Breath

2007-09-17T23:31:00.000-04:00

OK, so my new least favorite thing in the whole wide world is the MRI truck at the Dan Marino Center in Weston, FL.

Alex, Sophie, Edie and I trekked down to the Dan Marino Center this morning for Sophie’s C-Spine MRI. Her appointment was at 9:30, but I tricked myself into thinking it was at nine so that I could get us out the door in time to get to our appointment on time.

No food after midnight and no liquids for two hours prior to the procedure. Hmmm. This means that Sophie’s daily request for ‘cheeios, milk and honey’ would have to be denied. I am almost certain that this kid must dream of cheerios all night with the way that she asks for them immediately upon waking. It is without fail the moment she walks into our room, after greeting us with GOO MORNING, MOMMY!, we hear “can I some cheerios?” or “I have cheerios?” To say the least, I was a little stressed about having to tell her she couldn’t have any this morning. I briefed her last night about going to the doctor today, explained to her that she couldn’t have cheerios, and she seemed ok, but only the morning would tell.

Well, this morning she came in asking for cheerios and my stomach turned. I told her gently that we’d have to wait for cheerios until after the doctor looked at her brain. She nodded and smiled. That’s when I knew that you all were praying.
Operation Cheerio Distracto: successful.

Nana picked up Charley and drove her away, with both Sophie and Charley waving to each other like crazy and Sophie screaming, “Bye CHOLLY!”
Operation Charley Drop: successful.

So we headed down to Weston with the radio playing the Way and Brant and Nikki and REALLY just enjoyed the trip. Considering our mission, I was unnaturally relaxed. I’m usually in prayer most of the way down, and today I was able to enjoy our car ride and thought mostly about landscaping. Yeah, I’m not sure why, but I thought a lot about landscaping. Operation Safe Transport: successful.

Arriving EARLY to the DM center, we were greeted with smiles as usual and Soph was excited to be there. She is a true comedienne, descended from the Keefe lineage and she has us and many others smiling and shaking our heads in the waiting room. Still pretty relaxed – not thinking about landscaping anymore, but still have complete peace about this whole situation. Operation Waiting Room : successful.

We’re called back to MRI, and start prep. The room is painted with fish and Dude Crush, Dori and Nemo are friendly images that greet us. We go over more consent forms and explanations and ok, now we’re ready for the hard part. Sophie is not scared of much. We gave blood just a couple of weeks ago and she didn’t shed a tear. But she wasn’t held down or put on a bed for that. I think that for a sensory kid like Soph, being held down is more than just being held down. She is a mover…her life is about ceaseless movement. Even during sleep, Sophie moves….every two hours she wakes to rock and reorganize that part of her body that says, “move…you’ll feel better.” So for this kid, high chairs, car seats and any threat of immobility is extremely uncomfortable. Being held down and immobilized is terrifying and she let us know that this morning. If I heard ‘HELP ME’ once, I heard it five hundred times. Once her IV was in and she was able to sit up, she was fine…onto the truck. Operation Needle Know-how: successful.

Much to his disappointment, Daddy had to stay back with Edie. He’ll get his turn next month for the brain MRI. He was terribly disappointed. I felt bad leaving him.

The DM center has a portable MRI center, so it’s a big tractor trailer outside of the building. It kinda reminded me of one of those fair rides that has the virtual roller coaster inside it…but this was no roller coaster! Soph was great…they let her sit up, took her shoes off, kept her socks on (no nail polish allowed …. ?), and I held her as they pumped the sedative into her tiny little body. The anesthetist told me it was going to be fast, to let her fall asleep on my shoulder.

……….

I was terrified as soon as I saw her eyes start to get heavy. She fought it….he told me she was fighting it…..I was watching her lose consciousness and I was completely horrified and terrified and all I wanted to do was grab her off the table and run. All I kept thinking was her brain is tiny…please don’t let there be too much medication for her to handle…are you using more than you would use for a 12 month old’s brain? They laid her down where she yawned a couple of sweetest yawns and then took a giant deep breath that almost brought me to my knees. Oh God, please protect her. They keep checking the monitor…keep looking, keep listening, I’m watching them watching her. The anesthetist tells them to ‘keep her hand straight’ and sounds perturbed. I’m still nervous, and can’t imagine leaving her side. She is too vulnerable, so tiny, so precious, so sweet.

In come the ear plugs and headphones (which are ALWAYS too big), and I am told to come back in 45 minutes to get her. I am not happy to have to go, and wonder how they quickly they can make it to the waiting room if something goes wrong. The instant I have this thought, I ask myself ‘Where is your mustard seed, Julie?’

I look for Alex and Edie in the waiting room. They have gone outside. I finally feel safe. Seeing the man that adores that little girl as much as I do (maybe even more) makes me feel safe enough to shed a couple of tears, letting the fear escape my body through the salty tears that I rarely afford myself. He reaches out to me and holds me and says “I know.” And he does….we talk about what just happened. I cry some more. We both agree that Thursday is too soon to have her next MRI. We will cancel and move the appointment to October. We both admit that we haven’t prayed enough together lately and that we need to.

This is a long 45 minutes and we stay outside until we start to sweat. That takes about 18 minutes. ;) We are relieved when the doctor comes to get us and tells us that she is awake. I am completely flustered, hand Edie to daddy, keep the diaper bag, pass him her shoes and we do this weird dance of stuff and baby and try to figure out what the quickest way to Sophie is. They make us move our car (?), so I go back. The doc tells me that she is awake and that she did fine. I am relieved beyond belief. After thinking terrible thoughts and extreme craziness, Sophie is awake. Oh, halleluiah. Operation Sweet Sedation: successful.

I go back to my little girl who is cold and mumbling. She has goosebumps everywhere and has two fingers strategically placed in her favorite spot just behind those two front teeth. I am so happy to see her. I want to jump in the bed with her. I rub her head and cover her up and she turns her head and looks up to me and says slowly “doctors love me.”

Funny girl. Yes, Soph, EVERYONE loves you, baby. We are debriefed and shuffled out of the center through the back door. I stay in the back of the van with her….she is crying and extremely emotional. We spend the next hour and a half listening to her cry about everything. She is drunk. Alex and I think it is funny for the first 5 minutes.

We get to Nana’s to pick up Charley who is SO excited to see Sof ee-ya. She notices her band aids and bracelet and ask ‘whaz wrong wi sof ee-ya?’ Charley also made her first poo-poo on the potty at Nana’s. It is a big day for everyone.

As soon as we pull up to the house, Sophie asks for Cheerios. And Charley follows. They eat Cheerios for lunch….Sophie eats FOUR bowls. She is so happy to have her Cheerios. Finally. What a patient little girl.

I am happy to put this day in the books. Glad that we are home, safe and sound and that we have had one more day with our precious family. So glad to know that we are loved, that our children are loved and that nothing on this planet happens by accident. We feel privileged to be taught humility and gratitude in very specific ways everyday. We feel kinda like Ester and know that God has a plan for us, with this, right now.

Looking forward to another bowl of Cheerios tomorrow, I end this day with my sleeping Hero Husband next to me, my girls all asleep (no sedative necessary), and my God who has gently scooted me through this day with His giant, steady hand.

Operation Deep Breath: Successful

Post Script: A huge thank you to all of you who prayed us through this day. I know that you are all loving me and my family in ways that I admire. A special thank you to Emily. We covet your prayers....don't stop....it helps us both. ;)

Genetics: Unraveling the Sweater that is Sophie

2007-09-07T23:12:00.000-04:00

Psalm 139: 13-14 "For you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made."

I start this with a lump in my throat and my eyes brimming. Today we went to see Sophie’s new geneticist. Gulp.

We arrived at Miami Children’s Hospital after a little navigational trouble and 1.5 hours of driving. The drive was nice. Morning traffic is good and distracting. I drove so that made it even better. Our appointment was a short notice one, so I didn’t have much time to dread. That was a good thing. My heart jumped into my throat when they told us that they wanted to move Soph’s appointment to an earlier date. Every time the phone rings from Miami Children’s, it makes me a little loopy. So, I didn’t have time to go through the entire process of fear, terror, anxiety and sadness this time. That was good.

Seeing a geneticist is interesting. The funniest question for me is “Is there any possibility that you and your husband could be related?” I always say, “That’s a good question.” Nothing would surprise me about my siblings anymore. ;) They ask questions about your family and your husband’s family…and they draw a pretty tree with circles and squares and lines and dashes. You hear questions like “so are they healthy?” Sometimes the answer is yes, and sometimes it is no. Sometimes it hurts more to say yes. Ug. That is awful.

Geneticists hey look at our children differently. They see anomalies where we don’t. When I see Sophie’s amazing foot arch, they see a symptom. Where I see sweet little hands that I kiss and cradle daily, they see numbers and letters and say words like clinodactyly. When I look at her precious face, I see an angel: they pull out a tape measure and say words like abnormal and dysmorphia.

It is interesting to see her move about Sophie and ask her questions. It is sweet to see Sophie try to answer, to tell the geneticist that she is “Doctor Sophie.” Oh, little girl, you have no idea how I pray that is a possibility for you one day. The doctor continues to smile throughout the exam and watches her move around on tippy toes and talk to her two words at a time. She asks me if she is in school. I say no, she’s with me. She says “She needs to be in school.” My insides recoil as if I’ve been shot in the gut with a hollow point bullet.

Throughout the exam, I keep an eye on Charley who watches quietly and often asks “Whaz Sophie doing?” She stands within eight inches of Sophie and the doctor and stares, concerned. She finally comes over to me and asks me to hold her and I oblige happily. The questions begin with a complete history of Sophie’s life. I have to repeat that: Sophie’s LIFE. Just recalling it gives me chills sometimes, but I have found comfort in memorizing milestones and keeping it all cataloged in my head for times like this. Recalling miracles in your life isn’t hard.

We talk about her growth, her delays, her strengths and weaknesses. The doctor asks about self stimming and obsessive behaviors. I tell her Sophie has none, but Alex has plenty to make up for her. ;) We talk about the rocking, the lack of sleep, the toe walking, the unibrow, all the stuff that makes Soph, Soph. She asks Sophie if she can count…Sophie counts to ten and the doctor is SO excited. Then we say “Keep going, Soph”. Sophie says “leven, twewve, tirteen, sickteen, eighteen, nineteen, twenty!” We are profoundly proud and the geneticist is astounded. Nice. Alex and I glance at each other with pride that this world cannot understand. We talk about where to go from here, what testing must be done, what measuring tools to be used, and how we’ll know more once our tests get back from Baylor. Interesting….that tests are going back to Texas…that’s where Sophie was made. We leave the office with an appointment in November.

Alex and I are quiet. We process individually. We both agree we like Dr. Jayakara. She is awesome. It’s time for lunch out and we are hungry.

Here we are counting on a woman, some blood tests, and some technology to determine what Sophie is made of. We’re looking to people who have spent decades trying to unknit what God effortlessly created. We already know what she is made of. She is made of cheerios…;). She is made of exhilaration, music, determination, love, affection, and ceaseless movement. She is made of warm smiles, cold shoulders, skinned knees, calloused fingers, sun kissed hair, Olympian legs, and a face that could turn your life around. She is made of squeals of laughter, tears of frustration and all the rocking you could ever do in your lifetime. She is made of Charley's admiration, Daddy's heart and Mommy's soul. She is Sweet Sophie.

So we begin this process again, and we call on what little wisdom we have to get us through this. We will follow His leading, look for His guidance, listen for His voice. When things are quiet, slow and steady, we know that He is behind it all. When things are not…when we are anxious, harried, and ruffled, we will pray for revelation.

We praise Him for this struggle that makes us more like Him and gives us the opportunity to tell another story for Him and about Him and through Him.

Thank you Lord, Master Knitter, Designer, Father. We love you.

Goodnight....

2007-09-01T23:51:00.000-04:00

A tidal wave of gratitude as I walk from your rooms
I exhale and say Amen to the day with my girls
Messy hands, smiling toothless grins
Tippy toes and scraped knees
My heart longs for when you will hug me again
Remorse for the minutes lost with you today in busyness
Pride for the minutes spent connecting with you each
Singing silly songs
Snacking on carrots
Quiet table time
A moment for Mama
Click, click, snap
Click, click, snap
Click, click, snap
No, we can’t watch a movie…we’re almost there
Yes, that’s a BMW like Daddy’s
What an honor to behold them
To hold them and kiss them
To hear Mama and Mommy and Mammia
To see expressions of abandon turn to expressions of glee
as I round the corner
Thank you, Lord…you have leased me these miracles
Living and breathing only by your grace
And moving and growing by your voice
Let me know them one more day
Let me grow them here for You
For your glory and purpose
Thank you, thank you, thank you, thank you
Four your glory and purpose
Here or there
They are ours
I am grateful

Hurting

2007-09-01T00:28:00.000-04:00

I am a little sad right now. Today was one of those days where I felt the harsh reality of my Mother's diagnosis of cancer. I called and talked with her for about thirty minutes today, unleashing my frustrations in life, sharing my questions with her about what I should feel, explaining my insecurities as a mother and so on and so on. As our conversation came to close and I was hearing the exhaustion and sickness in her voice, I started to choke...I started to feel my throat close and that huge grapefruit was returning again to that familiar place right above my larynx. I always try to keep it together on the phone with her, because I know it isn't good for her. I don't think...maybe that's a bad assumption. I tell her over and over and over again how much I love her...I want her to know that, to feel it, to breathe it. I want her to know with out saying, that I cannot imagine my days without her, that I cannot imagine not feeling her confident hand on my back or not hearing her convincing and gentle voice of support. It is easy for me to fall into a pit of fear and despair, but I am immediately reminded that God has not given me the spirit of fear. 2 Timothy 1:7. So where is this fear coming from? Why would it be a more comfortable place in misery or terror? Because hope takes effort. Hope means stepping through, where fear means staying put. And although I know that every movement that I have taken toward Him and away from my own desire, I still think there is safety in stopping. And sometimes there is, but when it is preceded and surrounded by fear, it is stifling.

So I hung up the phone tonight, and I cried. I cried and I cried and I cried! And I called in my husband and I cried some more. And then he listened to me and my fears and my terror and my pain. And I just SAID it, and man, did I feel so much better. Instead of being afraid to cry, I cried. Instead of being terrified of the tears, I let them come. And I FELT. Wow. What a luxury? No, what a natural response to being sad. I think if I would allow myself feelings, they wouldn't come out all crooked and aimed at some innocent bystander.

Thank you, Lord, for my Mom. Thank you for letting me feel. Finally. It is awesome.

"I hate double minded men, but I love your law." Psalm 119:113

2007-07-31T23:22:00.000-04:00

Good morning, Lord. Thank you again for meeting with me here. It is a gorgeous day and I must say you've truly outdone yourself. My family is healthy and happy this morning. Alex is out pressure cleaning the back porch, the girls are watching VeggieTales, Edie is taking her morning nap and I am here with a nice cup of coffee and You. What could be better? The verse this morning has me thinking so much. So much my head hurts. It was only after becoming your child a few short years ago that my own deception was revealed to me. I always knew that lying was wrong, but never felt the need to be honest all the time. I found that my exaggerations and fibs were lies. That those little white lies are sins. I know that sin separates me from you and it makes me so sad to think all the time with you that my own lies have cost me. But I also know that confessed sin brings me back into communion with you and I am so very grateful to be sitting back in the lap of my father.

Unfortunately, because of my overwhelming desire to please everyone and to be of good opinion to everyone, to always be encouraging and supportive, I have been a liar. People come to me for encouragement, prayer, advice, support, and counsel. They always have. And in the past, before I knew You and your guidelines for my life, I would say whatever anyone wanted to hear. People like hearing that they are right, they are doing the right thing and making the right decision. They way to hear that what they feel is justified and appropriate. And i would always tell them they were...that they were justified in their anger or bitterness or appropriate in their feelings - regardless. But this is becoming more difficult for me, Lord. I am trying to know your laws, commands and heart better. I 'm seeking what you have been saying for six thousand years, unchanging, and I am seeing that most of the time your word and instruction and exhortation are in direct conflict with my human feelings and behavior and actions. So when someone asks me now "Do you think it's wrong to ....., " the comfortable response for me "Sure, do what you feel is right, " doesn't feel comfortable anymore. I know that you are changing my heart. I know that you are making me more like You, everyday, as long as I am trying. I know that your will for me is better than any that I could imagine for myself, but I also know that serving you and living for you and representing you has me in direct divergence from what is comfortable. This double minded thing is the toughest for me. I find myself lying all the time about stupid stuff that is so very unimportant, but has huge consequences for me in relation to you. I know that I have murdered myself in defending myself or actions, and being dishonest to others about how I truly feel. My husband doesn't understand this at all. He has never been afraid of telling the truth or confronting dishonesty (intentional or not). Explaining this struggle to him is funny. He often says , " Well, why don't you just TELL her that? and my response is normally, "I don't know." But I DO know. I have total and complete fear of being deserted.

So this is the conundrum. I would rather abandon your word. I'd rather discard your truth than risk abandonment by someone who could NEVER love me as you do. I throw out my eternal relationship with you for a temporary and disappointing relationship with someone here. Ugh. This hurts. I am seeing g now that my own double mindedness hurts everyone involved; the person I am trying to 'help', myself and You. Thank you for this revelation this morning.. I know that I must be truthful in all that I do here, regardless of the earthly consequences. Please remove from me the fear of abandonment and discard, and place in me the peace that only comes in being in unity with You. Please make me even more uncomfortable in m deception and dishonesty. Help me to see the security in your truth instead of the cheap escape in my lie. You HATE double minded men. Ouch. I know that you will never leave me or forsake me, but you also cannot bless me if I am walking outside of your will and protection. Thank you for this revelation. Help me to put it to good use today. Remove the fear of rejection.

I am so grateful to know and be known by you.

Your precious (as you have said) daughter,
Julie

Weed B Gone on Jesus

2007-07-12T01:14:00.000-04:00

So for a little extra cash, I clean my Dad's office every week. It's a real blessing because I get to clean toilets - no- because I get a couple of hours of silence and solitude and sometimes I get to spend some time with my sister, Amy. About once a month, I have to do some light outside work like weeding, trimming hedges and cleaning up the parking lot.

At my Dad's prompting, I had to do some weeding this week. The weeds were pretty bad and getting to be quite the eyesore. So, after doing the inside work, I ventured to the parking lot where I was met with this overgrown and overwhelming parking lot vegetation. As I started on the far left side of the lot and worked my way right, I started getting comfortable in my work and zipping right along the edge of the asphalt. It was about 90 degrees by then and kneeling at the black asphalt wasn't particularly pleasant, but this work had to be done or I don't get paid. Know what I'm sayin?

These particular weeds were pretty interesting. They stretched out far and by looking, I thought I'd need some gas-powered apparatus to pull it out, but after pulling one out, I realized that there was only one attachment point to this whole big green lot-monster. Wow, what a sense of accomplishment after pulling out that first one. Looking down the path, I thought the job might be easier than I'd initially feared. Isn't that what the pursuit of righteousness feels like? Like, Man, there's no way that I can face this issue that separates me from God and take it on now. I'll just put it away until I have time to face that struggle. Unfortunately, just as those ignored weeds in my Dad's parking lot continue to grow, my own ignored sin and bitterness and resentments grow, too. They start little and always grow out of the cracks in my armor just as those weeds find cracks in that asphalt to grow in and reside. But also like those same weeds, once I acknowledge my own rebellion and face those issues that are overgrown and overwhelming, I can find the anchor that has kept this weed strong and stubborn. See, that weed started in one spot, but as I continued to feed it and nurture it, it would spread all over the parking lot that is my heart and mind. But, as I find that one place of attachment, and pull it loose, I can find freedom in detachment from that behavior, habit, or obsessive thought.

Halfway through that job of yanking and pulling and scratching, I was sweating. I was hot and thirsty. So I took a break, went into the comfort of the cool air conditioning and took a nice cool drink of water (John 4:7-14). See, that's so God. He sees us in our struggle. He knows that working on cleaning up our act is hard, dirty work (Mike Rowe would like it). So he gives us a break from that dirty work, if we want it. He gives us a place of comfort and refreshment in His word - promising that this work is worth it (Psalm 119:2). But then He always prompts us to continue working, changing, weeding.

So I went back out there, into the heat (after checking out Criss Angel's latest on YouTube - Amy insisted). And kept working and pulling those stinkin' weeds that made that parking lot look like crap. And then when I was done, all through with the green monster and his little friends, I piled them all up and dumped them in the dumpster - and they were GONE. What a metaphor for the great God that we serve (is it OK to compare the creator of the universe to a garbage can?). He sees our sins, we see our sins, recognize them, confess them, turn from them(and keep trying) and God says, "OK, take those weeds you've pulled and take them to the dumpster. Let them go. I'll take them as far as the east is from the west and I will never remind you of them again. Never. Just make sure you've pulled from the root and taken care of those nasty things. " He says "I'll take them from here." And I say, "OK, Lord, thank you for your dumpster."

So will those weeds never come back? Probably not. Will my Dad tell me to get out there and pull those weeds? Probably. Will I have to go out and do the hard work again? Yes. Definitely. But I do know that the work will be worth it.

And so am I.

The bible tells me so.

One Breath at a Time

2007-07-05T13:17:00.000-04:00

So this week has been really tough. A dear friend of mine and sister in Christ had to bury her newborn girl, Miller Grace. Fresh from heaven, she lived five days.

This week has had me thinking quite a bit about sovereignty and grace and fear. It's taken me straight back to the days of waiting and wondering and hoping and fearing. What I cannot understand is why...and then I am reminded that God works in a dimension that I am incapable of operating in. I guess if I knew the answers to the tough questions, I wouldn't be learning anything. Sometimes I wonder if learning and growing are all that they are cracked up to be. Then I read Psalm 6 from The Message.

Goes something like this:

Please, God, no more yelling, no more trips to the woodshed. Treat me nice for a change; I'm so starved for affection.

Can't you see I'm black-and-blue, beat up badly in bones and soul? God, how long will it take for you to let up?

Break in, God, and break up this fight; if you love me at all, get me out of here. I'm no good to you dead, am I? I can't sing in your choir if I'm buried in some tomb!

I'm tired of all this—so tired. My bed has been floating forty days and nights On the flood of my tears. My mattress is soaked, soggy with tears. The sockets of my eyes are black holes; nearly blind, I squint and grope.

Yes, David. You know. You know that misery. How I have prayed that I would run out of tears...that I could finally sleep or rest....that I could somehow mend that gaping wound in my chest that just wouldn't heal. That wound that made my head pound and my eyes sore was unbearable.

and then this:

Get out of here, you Devil's crew:at last God has heard my sobs.

My requests have all been granted, my prayers are answered.

Cowards, my enemies disappear. Disgraced, they turn tail and run.

and maybe those answered prayers aren't the answers we'd hoped for.

And maybe one day we will see why.

But for now, there is just pain. Raw, mind shattering pain.

My prayer for Em is that the helmet of salvation would cover her. I cannot bear to imagine the pain that she is experiencing now. I can only hope that that perfect love that He always talked about will swallow her whole. I’m praying for her protection. Protection from people who are overly encouraging or sadly absent. Protection from insensitivity and oversensitivity. During this time the enemy of her soul will try to destroy her with her own mind. I am praying that God’s reality would penetrate the fog of deception and confusion. I'm praying the sweet sedation of Him would sweep over her and numb her. Just for now.