Friday, September 07, 2007

Genetics: Unraveling the Sweater that is Sophie

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.


Kelly said...

It is almost as if He has breathed into mommies the real truth. The truth that doctors sometimes don't have time to notice. These beautiful children are all gifts, they are all fearfully and wonderfully made.

Kate said...

This post makes me miss Sophie like crazy!! Then, that makes me miss you and Alex like crazy!! [sigh]