The quote above popped up on my Instagram feed the day that Barbara Bush passed away, and it felt like she was speaking directly to me. I have been thinking about writing this blog post for weeks, and I keep coming back to this quote in my mind. This quote can, no doubt, be applied to all humans, but I believe it is especially meaningful when you think about people with special needs, like my sweet baby Matthew.
Fifty years ago, babies born with Down syndrome were almost all institutionalized. It was very rare for a family to go against the doctors advice and to take their baby home with them. People born with Down syndrome were thought of as problematic and a burden on their families. Because they were institutionalized and not given opportunities to grow and learn and experience the world, their potential was stifled.
Because of early intervention, inclusive education, an increase in higher education programs for people with intellectual disabilities and more opportunities in the workplace, we are just now seeing a generation of people born with Down syndrome who are able to reach their potential and it is encouraging. Today, a baby born with Down syndrome has limitless potential, just as any typical baby. The battle lies in getting others to see their potential and allowing their strengths to guide the way.
Matthew will be ONE in three days (can you believe it!?), and I figured this would be a good time to talk about his future. J.P. and I have very high hopes for Matthew's future, and we believe his potential to be unlimited. One of the biggest lessons we have learned over the past year is that people who have Ds can do almost anything, just on their own timeline. Matthew gave us our first lesson on this before he was even born! I got induced on May 8th and was sure he would be born that day. I was even so bold as to post a picture saying "It's baby day!" Matthew had other plans, and decided to hang out on the inside for one more day, making his debut at 3:12am on May 9. This was just his introduction to the lesson he has been repeating many times over the past year.
As Matthew turns one and isn't considered a "baby" anymore, I know the developmental questions will get more common. A typical one year old has at least a couple teeth, can walk or cruise around on furniture, maybe says a couple words and is transitioning to eating table foods. Matthew has zero teeth, isn't even crawling yet, has good pre-verbal skills, but no words and will only eat baby food. And you know what, we are incredibly proud of him!
I don't focus on the things he can't do, I focus on how far he has come and all the amazing things he CAN do! He can sit up by himself, which is a huge victory for babies with low muscle tone. He just started waving, and I dare you not to smile when he waves at you with one hand facing out and the other facing himself. He has made it almost 8 months without having to go back on oxygen. He has slowly, but surely, grown to a whopping 14 pounds. He sleeps through the night (knock on wood). He takes naps in his crib, which I thought may never happen. He eats puréed baby food like it is going out of style. He drinks from a straw cup, which none of my other kids could do when they were one. He signs "all done" when he in finished eating and can tell you how big he is, if you are lucky to catch him in the mood to perform. Every single milestone he reaches is that much sweeter because we know he has to work extra hard to get there.
I've said it before, and I will say it again, Matthew's future is bright! We will fight for him and make sure his potential isn't stifled by low expectations or people focusing on his weaknesses. We don't know Matthew's strengths yet, but we can't wait to see the person he grows to be and we have no doubt that he will change the world.
And now for a quick medical update. It's been four months since my last post, and you can definitely take that as no news is good news! Matthew has been doing amazingly well. He hasn't had any major complications or illnesses, and we are so thankful! After the year we had, we have enjoyed just coasting along (with 5 kids) for the past few months.
We made our way up to Kansas City for Matthew's one year checkup last week, a little early because of scheduling conflicts. We saw 4 different doctors who were all impressed with how he looks and sounds. We saw a pulmonologist for the first time, and she asked us 100 questions and he seemed to pass her test. She said his lungs sound great and she was pleased with all his progress. The only concern is that he has a slight elevation in his diaphragm on the right side where it was repaired. Apparently it was also present when we were there six months ago, but the doctor we saw then didn't mention it to us at the time. Because Matthew is doing so well and not showing any signs of a struggle to breathe or any other symptoms, they are just going to check on it in a few more months. If it is worse, or if he shows any symptoms in the meantime, we will have to talk about doing another surgery. I left the appointment feeling a little bit discouraged, but was reminded by the doctors that he really is doing very well given his start to life. We didn't get the all-clear we were hoping for, but it was overall a good appointment. We will go back in September to visit the Down syndrome clinic and then to get a chest x-ray and checkup with the neon clinic. Fingers crossed that his diaphragm strengthens and that we do not have to have any more surgeries.
Now the countdown is on to Matthew's first birthday! We will be celebrating him all week, and I can't wait to share all the joy and excitement with you in a new post very soon. We are so grateful for all the love, support and prayers that we have received. We could not have made it through this year without our village.
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