And now, now C is not that tiny infant anymore but this history of lung disease will always be a part of him. His dad and I watch him closely whenever his breathing patterns change, even if he doesn't show signs of distress. We always keep a stock of breathing treatments in the house and we still have the same nebulizer he used as a baby when he had to get treatments a couple of times a day. It's just kind of ironic in a way, to watch my son grow from the tiny infant that he was, small enough to fit entirely in the palm of his daddy's hand, to this tall tweenager, soon to be taller than me but, to still face some of the same issues we had when he was on a ventilator, with oxygen support and a trach. It's just ironic and somewhat painful.
It must be painful because my chest just constricted at the thought and that doesn't happen unless I feel something deeply. I never stopped to think about how all of this makes me feel. Now I know. I know he's defying the odds and I'm so happy that he's here but, as a mom who loves her kid, all I want is for him to be OK. I just want him to be able to live life like anybody else. I don't want to have to worry about him running out of breath because he's exerting a little physical effort. I don't want to hear those loud noises just after playing a game of tag. I don't want to have to worry about future surgeries to dilate his trachea and adjust the size to his growing body. Sometimes I get really upset. That's when I write. It's like exhaling. As I type words, the emotions work themselves out and I feel better after. C was trached while still in the NICU. His doctors felt that he was way too alert to have his face blocked by oxygen prongs because he was intubated. It means that he had tubes connected to a ventilator going through his nose or mouth, sometimes both, into his lungs. They were cumbersome and covered most of his tiny face. I know it sounds like a lot but these tubes kept my kid alive so that's how I think of it. So the doctors told us, his dad and I, that getting a tracheotomy would give him more freedom of movement by allowing him to turn his head around and interact with his environment since the tubes would now be inserted through a hole in his neck into trachea instead of his nose or mouth. He was always a very lively little fellow, that is true. But that's not why we agreed to have a trach put in. We did so because they told us that the efforts required to breathe on his own, which often happen when he got disconnected from the oxygen tubes, because he was always moving around, would tire out his heart. Which parent would say no upon hearing this argument? Exactly. And that's how C ended up with a tracheotomy for the first two and half years of his life.
I love my boy. I absolutely love him. I watch him live and he really is quite a character. He enjoys the life that he has and, even though he has known and experienced so much physical pain already, at such a young age, he just wants to experience things. He has his shows that he likes: some age-appropriate, some not because they're really for younger kids; he also has things that he likes to do such as draw about those shows he likes, talk about those same shows and be a part of whatever is taking place around him. If he's at a party and everybody is dancing, well at a house party that is, he will most likely try to be part of that, too. I notice that he gets a little intimidated when we're at bigger parties. When we go to those, he won't really do much. He'll sit and observe but, at house parties where he knows many of the guests because he's seen them before, he'll be bold and interact with other adults and kids, however awkward that interaction may be. He has his routine at home, too. Even those things that are a manifestation of his disability are somewhat endearing. For example, he loves peanut butter. He could probably eat an entire jar if I let him so, every day for at least the last 4 years, he gets a peanut butter and jelly snack when he's home. He'll do that at least once, sometimes twice a day. The same goes for chocolate milk. He's now able to prepare his own snack so he'll go to the fridge and get everything he needs and I'll watch him sit and completely enjoy his glass of chocolate milk. When he does something, he's really into it; that's what makes me smile when I think of him. He's getting older and though the autism traits show up in different ways as he goes up in age, he's able to be more specific when communicating with us now. He's a reader. Reading comprehension is not great in school since he has both speech and language issues but, he can read fluently so now, he will watch TV, read magazines and take note of new games, new movies that are coming out and tell us way before they're out, that he wants to go see this or that movie. Sometimes, we don't even know about these movies but he does because he pays attention to what he likes, his interests. I find that trait of his personality so funny. LOL. So it's a challenge but a challenge that I intend to take on until my last breath. I want to see this kid live his best life and I just hope God grants me the opportunity to do so. I love being his mom. I would have loved giving him a little brother or sister but... Life happened. I couldn't focus on having another kid when I already had a little boy who needed so much attention, especially in the early years when I had to take him to multiple specialists for one thing or another, when I had to travel to Cincinnati for his trach reconstruction surgery, stay there for close to 3 months then go back at least once a year, sometimes more often if we needed to, for the next 4. It just wasn't the right time. I don't know if I'll have another kid. I don't even know if I can. Now would be a good time but I'm not exactly in the prime child-bearing age anymore so I don't know... It's OK though. It's OK if it's just C or if it's not. He makes me such a better person, through all the worries and the pain, he makes me a better person. Love my boy.
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