As we drove home from Rhett's appointment in Austin today, I started thinking about just how far Rhett has come. He has made so much progress and been through so much in his short 16 month life.
It all started with the twin pregnancy. It can't be easy to be sharing a womb with someone else! We knew early on in the pregnancy that Rhett was trapped low in my pelvis. We had no idea that he was stuck in such a way that he couldn't move. We also didn't know that his head was turned to the left, and that his little neck muscles on the right side were not developing. Thankfully enough, though, we did not have any major complications and the twins were born at 37.5 weeks. The twins did not have to spend any time in the NICU, and came home with me 4 days later.
Those first few weeks at home are a blur. I remember nursing them. A lot. And I remember staring at them while they slept to make sure they were breathing. A lot. And the spit up. Oh, the spit up. And all the laundry, mostly due to the spit up. Rhett was finally diagnosed with acid reflux at 4 months, and put on medication at 6 months. But the amount of spit up we witnessed in those early weeks.....wow.
At the twins' one week appointment, our pediatrician noticed the tightness in Rhett's neck muscles and gave us some stretches to do with him. And we did them, probably twice as much as we were told to. Then at the two week appointment, there was no improvement, so we were given a few more positioning exercises to try. At one month we started discussing therapy, and at 2.5 months we took Rhett to his first physical therapy evaluation. Watching my baby scream while a therapist turned and twisted his little head gave me chills. It was hard to fight back the tears appointment after appointment, week after week. We continued on with slow progress.
At 4 months Rhett was in weekly therapy and we were spending hours a day working with him at home. We were also really starting to see his face change, with one cheek looking fuller and his eyes and ears not aligned anymore. It was difficult to find a balance between therapy with Rhett, and giving Rhys the attention she needed and deserved. While my friends were going to play dates and the zoo with their babies, I was making appointments to see specialists or at home listening to my baby cry as I stretched and did his therapy with him.
At 5 months we got Rhett fitted for his first DocBand. The helmet was going to help with the facial asymmetry and plagiocephaly (flat spot), but it was not going to take away the physical therapy or other issues that we were noticing. It was at this age that we noticed Rhett was not doing the things that Rhys was doing. He was not reaching for things, holding things, chewing on things. He didn't move his arms much at all. We were worried.....was it related to his head shape? Was it something else? Fear became such a part of my day as I watched and waited for appointments to help explain what was going on.
At 6 months, we had a follow up appointment with our pediatrician. I will never forget that visit. She started out by saying that she thought Rhett might have Cerebral Palsy. I don't remember anything she said after that. I was numb. My mind was racing. What would we do? What would life be like? Why was this happening? Would Rhett walk? Would he use his hands? Would he throw a ball? Would he be in a wheelchair? I was consumed with fear of the unknown. We made an appointment with a neurologist to confirm, but we were going to have to wait 3.5 months to get in to the pediatric neurologist. And 3.5 months is a LONG time to wait when it is about
your baby.
I started educating myself as much as I could and doing every single type of therapy they told me to. Any little thing I could do, I did it.....we did it, and we started seeing improvement. Month by month we saw progress as we waited for the appointments.
Then we saw the neurologist, and our minds were put at ease. Rhett was given a diagnosis, but it was not CP. He was diagnosed with Developmental Dyspraxia. We left that appointment feeling relieved and thankful, but still a little uncertain as to all the challenges Rhett would face. Rhett continues to make progress, but every little thing has been HARD for him. Learning to sit.....hard. Learning to roll over.....hard. Learning to crawl.....hard. He works so hard each and every day. I'm so thankful that God blessed him with a strong will and great determination.
If I knew then what I know now, would it have been easier? Probably. But part of the journey is waiting, and growing, and relying on God through the tough times. We feel so blessed at how well Rhett is doing now. As I continue to take Rhett to appointments, I see other families facing much more than we have had to deal with. But this has been our journey, and for us, it has been a struggle.
I read somewhere that parents of special needs children lose the illusion of control early. Parents of typical children often are fooled into thinking they are in control of those little lives, that this action will beget this action, that they are in charge. I know we felt that way with both the twins. The article said that the illusion is shattered in early teenage years but especially in the beginning the illusion is there. For kids with special needs there is no illusion. You are thrust into a world of unknowns, a world that we knew nothing about but were part of just the same. I always thought that if I did things a certain way, that things would turn out okay, that life would go the way I wanted, and that I would be in control. So not true.
My little boy has taught me so much. I know that this has all been a blessing, though not one I would have ever asked for. I've learned that our marriage is strong, that God gave Tim qualities that I would need through this process. I learned that family and friends can be and are a source of strength and encouragement on the hard days. I learned that I am not in control. Rhett has taught me that each day is a new beginning, a new day to start again. I have learned that I serve a mighty and faithful God, who will never give me more than I can handle. I learned that my faith is strong, even though I sometimes am weak. I have learned that God is big enough, his grace is sufficient.
Even though Rhett is no longer wearing his helmet, we are not "finished" yet. He still has Dyspraxia and always will. I have just been thinking a lot about where we have been and where we are going. There are still so many unknowns right now, and we don't know what struggles Rhett will soon face. I know that it will be okay though, and I don't need to have all the answers. I sometimes want them, and struggle to find them, but I have peace in my heart.
Thank you, Rhett, my beautiful teacher, my beautiful baby boy.
