Saturday, November 03, 2007

My New Mantra

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...


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.


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


We talk about what makes her different.



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.

1 comment:

Emily said...

God is good all the time. All the time, God is good. :)