So I can't see much resemblance Liam and either of his parents but one mark I've made on Liam is... I had to wikipedia it... both of our philtrums (the vertical groove in the middle area of the upper lip, common to many mammals, extending from the nose to the upper lip) are very defined and you can see from the ultrasound that Malia's is too! Anyway- that was one exciting part of our day yesterday.
The other part of the day I wanted to write about was not so exciting. We were in target and I saw a girl who looked to be around 11 or 12 with cafe au lait spots all over her legs- which if you're reading this you probably already know cafe au lait spots often mean neurofibromatosis is likely to form and that Liam has several of them. She turned around and she also had a lot of spots on her face. My first reaction was- thank goodness Liam doesn't have all those spots and then I realized this girl probably didn't have all those spots when she was his age- it's common for them to increase with time- so it's possible he will have spots like that. So I began to cry. In target. Part of me wanted to ask her when those spots developed and I was hoping she'd say at an age Liam has already passed. But I was too busy crying- I couldn't compose myself enough to put my questions into tactful words.
I was ashamed of myself for crying. Most of the time I don't think about Liam's probable NF diagnosis. When I see his big cafe au lait spot while changing his diaper I'll reassure myself it's okay and I move on. But I'm gonna guess this is the 3rd time I've let it all sink in and let myself feel the apprehension that I think is completely normal. Liam is the cutest thing I've ever seen and spots on his face are not going to change that. But it will change the way other people look at him. People in target will notice something different and they will stare. Some jerk kid in middle school is going to make fun of him if his legs are covered in brown spots. And as a mother, I don't want that for him. I don't want him to be part of the 50% of NF patients who also deal with learning disorders. I don't want anything to be difficult for him; I want him to sail through life and never struggle.
But then I remembered a couple of verses (James 1:2-3) that we read over and over again when we were in the hospital after Liam had his seizures. "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." And reading this reminds me of how much I've grown from enduring trials. I think of how much of a control freak I was before all of the random underways and duty nights that come with being a Navy wife. I think of how anxious I was about everything until Liam was born and almost immediately taken to the NICU. How much better of a parent I am now being able to stay calm in most situations than I would have been had I not gone through these trials. And so I will be strong for my boy. I will remind myself that trials produce perseverance and build character. Children look at their parents' reactions before they react- we see this when he falls down or when he puts the puzzle piece in the right place. He will cry more if we look scared and he will get more excited if we clap for him. The same will apply in the trials that will come with NF- whatever they may be.
We have a book that we bought when I was pregnant with Liam called 100 Bible Verses to Bless Your Baby Boy and we read a page to him every night before he goes to bed. I'm really into building traditions now- even though they may not mean anything to him now- so that when it does start to make sense and mean something, it's already routine. Here's today's reading:
You are a Miracle in God's Eyes
Every perfect gift is from God.
These good gifts come down from the
Creator of the sun, moon, and stars.
James 1:17
When you came into the world, a miracle was
created by God. The gift of life was given to you.
As you grow and experience life, you will have
moments of laughter, tears, sickness and good
health. Each one of these is a stepping stone to
becoming the person God has designed you to be.
How appropriate. He didn't pay attention to a word we read but it was just what I needed to hear.
No comments:
Post a Comment