As a kid, I often heard things like “What doesn’t kill you makes you stronger” and “God only gives you what he knows you can handle.” This year has been a test of both of those adages for me and for my family. And maybe my challenge is preparing me, preparing us, for challenges to come.
Today, two major things happened that have absolutely nothing to do with my separated pelvis, pelvic reconstruction surgery or recovery. I’m writing about them only because they are part of our journey as a family, and frankly, because writing makes me feel better.
Let me back up for a second. The Little Guy’s nine-month well baby checkup was last Thursday. I was at a physical therapy appointment at the same time my son was being weighed and examined. When my husband and son came to get me I learned that our family doctor discovered a heart murmur. She ordered some tests — blood work and an echo-cardiogram – so we can determine the cause. But, she told my husband, because of the Little Guy’s small size (13 lbs, 10 oz at 9.5 months) the murmur could be caused by a hole between the right and left chambers of either atrial or ventricle portions of his heart.
This afternoon the Little Guy had that echo-cardiogram. We knew the tech couldn’t give us answers. She told us the report would be sent to a pediatric cardiologist at the KU Medical Center (here we go again) and it could be the end of the week or next week before we have news. Maybe it’s nothing. Maybe he’s little because everyone is different. Or maybe he is a one in every 1,000 baby with a congenital heart defect.
The other major development happened this morning. At the well baby check up, the doctor told my husband that she would ask the state to check on the Little Guy’s motor development. She was concerned specifically about the fact that if he is laying on his back he does not sit up on his own. He does it with no problem if he can brace against your thumbs.
This morning I got a call from a state worker. She explained what would happen. To start, someone will come to our house. “How long will the evaluation take?” I asked. Then she said it: “We don’t need to evaluate him. The doctor has diagnosed him with failure to thrive so that means we can start services now.”
She what? FAILURE TO THRIVE?! The doctor didn’t say that to my husband at all. She had gone out of her way at previous appointments to be reassuring. She has said repeatedly that because the Little Guy’s head was growing normally his brain was developing and we shouldn’t worry. So this news from the state worker was a total shock to me. The woman who called me was very sweet. She took her time explaining that their goal was to “keep him from falling behind.” She made no judgements about the Little Guy. She asked a few questions but assured me that the team would be there for him as we are.
In a few days, I was told, I will hear from an early childhood special education teacher. That teacher would be on the team with a physical therapist, occupational therapist, speech therapist and social worker.
My mind was racing as she spoke. He turns pages when I read. He listens so intently, makes faces, laughs when funny things happen, eats like a beast, all of the things I expect him to be doing. How can anyone say he’s failing at anything?
The feeling when someone praises your child is unbeatable. This was that feeling flipped on its head, plus the shock factor of it being sprung on me. What a gut punch!
I’m trying to think of this as a positive. More people on our team, on the Little Guy’s team, can’t be a bad thing. But it is so hard to hear that something may be wrong with him. That, potentially, several things are wrong with him. He could need these services for years. He could need heart surgery. HEART and BRAIN are two things you never want to hear bad things about. Hearing about both in the same week is a lot to stomach.
If not for my progress in my own physical therapy, I’m not sure I would be speaking coherent sentences right now. I don’t know where I would be without the good – knowing that I walked into the heart center for the Little Guy’s echo without my walker and that my wheelchair will be returned before the end of the week.
One thing I do know – we’ve got as much as we can handle right now.
I know that awful feeling you get in your gut when you’re told something isn’t right with your child. We are praying for him and for your peace. Tom and Linda
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