Always there

When your kid has a history of illness and hospitalizations, the thought of a possible relapse never really leaves you.  It's always there, in the back of your mind.  Throughout his 12 years, C has been hospitalized more times than I care to remember, probably more times than any kid should have. I get those families' heartaches, the ones dealing with children battling debilitating conditions like cancer or heart defects. It's hard. I'm also pretty sure that some parents have dealt or are dealing with much worse than us but it doesn't change the fact that having a child with a chronic condition is pretty stressful. C had some serious respiratory issues when he was born. He was a tiny preemie so of course, he developed many conditions associated with prematurity.  I can't recall the exact number of times I walked into the NICU to hear that his lungs had collapsed, that the doctors had to adjust, read increase, his oxygen settings or, that the respiratory therapists had to give him an extra treatment. It happened enough times to make me cringe whenever I heard the words lung collapse.
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.

He's growing up.

My son is growing up.  This was his last year in elementary school and he is now on his way to middle school.   I think this was his best school year yet.  Do you know what happened this year? You won't believe it but two major things happened, two fantastic, unbelievable things happened:
The first one was that for the first time in forever, C went on an overnight school trip.  That. Was. A. Big. Deal!!!! We had never, ever allowed C to spend the night away before. He's been at my mom's, his grandmother but that's it. Field trips have always been same-day no biggie. You go and we pick you up after school but this one was something else completely.  My husband who's also his dad, my husband and I had to prep him for everything and I mean, everything.  Because he's never been away, we didn't know how he was going to act, whether he would understand privacy and personal space and appropriateness.  We didn't know. We'd never gone down that road before so we gave him a crash course in social norms. We had to go over bathroom etiquette, food and eating etiquette, safety, everything... And the whole time, my heart and I think his dad's too, our hearts were in our throat. We kept wondering: Is he ready? What if they call us? He'll be miles away! I told my husband who happened to be spending time at home that week "why don't you go?  You could go and just follow the bus. Just go and stay at the same hotel. Maybe he could spend the entire day with his class but can be with you at night." Yes, I did. I'm not going to lie. I was just thinking about keeping him safe and preventing any embarrassment. I didn't know if he would understand that he had to lock the bathroom door when he was in there, that he had to make sure he was fully clothed, take care of himself, all these things. We even allowed him to take his DSI though not the ipad but we were afraid for that, too. Would he remember to bring it back? We had a thousand and one questions going through our heads until the day of the trip. Then we just waited; held our breath and waited.  We figured that this will be a kind of test, a measure of his social skills and survival abilities.  This, we thought, will tell us so much about our kid. How far he's come, where he's still struggling. So much. The night before the trip, I called him over as I was packing his overnight bag. I showed him everything I was putting in there, going over how and when to use each item, rules associated with each situation. Really kind of a crash course into how to behave on an overnight class trip. I tried to think of every possible scenario, of every problem that could arise.  And I just talked, about each and every possibility:  Games he was or wasn't allowed to play (not sure he really followed those rules), how much money he was allowed to spend. He had just come back from New York and his grandfather had given him a $100.00 bill. He was only allowed to spend 50. I also wrote a note to the teacher about the money. I found out a stack of papers that were sent home regarding the trip after the school year had ended and, it turned out that teachers were not responsible for money; but his teacher didn't not even hesitate; she didn't say a thing, just took the envelope with a smile. She's the reason C went on this trip. She really is. She pushed and asked and persuaded. She went over the arrangements, who C would be sharing a room with. This teacher, she is simply... She's someone special. She was rooting for C to go and in the end, she convinced us to let him participate in this amazing experience.  So we did all of this then, it was time to tackle the food issues. I don't know if I told you before but my son is orally defensive. He has oral-motor dysfunction and doesn't chew properly. He's also afraid to eat anything that is crispy or requires lots of biting, masticating. We've had him doing feeding therapy since he was in the NICU (hospital unit for preemies) but, that stopped in 2013. We're looking for another feeding therapist in fact. We're hoping to be able to work with one soon. So anyway, we had to make sure our kid wouldn't starve so I made him his usual breakfast,. oatmeal.  I had to think:  He will need this for two days now. His teacher had said she would bring a cooler so we made him some and put it in one of those thermos. We made enough for the road and the rest was to be stored in a cooler so that he wouldn't need to worry about breakfast on the second day. I also made mac and cheese just in case. His teacher said she was sure he would be able to find something for him to eat but my poor mother's heart just couldn't take the risk of having him without food so I cooked and sent. And that's how we did it. We sent him with his overnight bag, a slinger, money and his DSI and he made it! There were no urgent phone calls, just texts and pictures and maybe a call to ask if C was allowed to have orange juice but he made it.  No issues at night or in the morning. No embarrassing incidents. He took care of himself his teacher said. He had some trouble packing when it was time to leave or maybe he was taking too long but my boy was fine!!! When my husband went to pick him up on Friday night, his teacher told him: "You have a great kid! He was fine. no trouble at all."  So yes! He had fun and he was excited. He even went to bed super early the night before whereas he usually complains that he's not sleepy but not that night. He went straight to bed because he had to be up at 4 am and he sure didn't want to miss the bus. We got to the school parking lot and the buses were already there. So were other parents and the teachers. C had on the wrong shirt. Apparently, his dad didn't read the note that all 5th graders were to wear their 5th grade shirt. But we had it in his bag so quickly, his dad took him to the car and changed it. And then it was time. C was greeted very enthusiastically by some of his classmates and they just whisked him away. He was taken to the bus and settled happily with two other friends. And, he already had an ipad in his hands. The girls sitting with him were letting him use theirs.  Lucky kid! He was smiling! His teacher took me on the bus and told me "You've go to see this". And I saw and I smiled and I was so much happier, felt so much better. This was the right decision.  We'd made the right decision. I think this was one of the best things we've ever done for our son.
The other thing was equally important though for completely different reasons.  Well, C had a "date"!!!!! Yes he did! He had a date for the 5th grade "graduation" dance at his school. I found out about a week before the dance from the date's mom.  I was leaving his academic fair at school on a Wednesday evening, on my way out the door when someone I didn't know but who was super nice told me "Hi. So you're C's mom. Your son is going to be my daughter's date for the dance." I swear I thought it was a joke. Now you know that C being language impaired and autistic doesn't usually share information about what goes on in school.  We have to ask teachers and check his backpack, our email. that sort of things to keep up with school happenings. So to hear that my son had a date was like hearing that elephants spoke Chinese. But the lady insisted. Yes, he asked my daughter to be his date and she said yes. And this cutie pie of her daughter was bobbing her head "yes, yes. he asked me to be his date". So mom told me how her daughter had asked C what his favorite color was and how he had said "green" so that mom and daughter had gone shopping for a dress that matched those requirements and had found the perfect dress." All I could think the whole time this conversation was happening was "what? What? Are you serious?  What? You went shopping?" I just couldn't believe what I was hearing. It was good. It was very good. Just couldn't believe we were talking about my kid and a girl. And she was so sweet and so was mom btw. The only question I had was "Did they know? Did they know my son was autistic? Was his classmate being nice or was she genuinely excited?" It was just too funny. So I went home and shared this on my FB page like "OMG. You guys are not going to believe this but C has a date and apparently he said he liked green and now the date got a dress with green so I have to do something like get a green tie!" I was screaming and laughing all at once. How crazy was that that my kid who is so awkward found himself having a "date" for the 5th grade dance. That was, that was just the last thing I expected. But I was happy for him. I don't think he quite understood the implications of having a date at first because both his teacher and I had to remind him that he couldn't ask anyone else to be his date because he already had one.
That day was a beautiful day. Just perfect. He looked so handsome in his outfit. We got his "date" a flower and how funny that they arrived in school at the same time. So C handed her the wrist corsage and said in his gravelly, deep voice, "that's for you" and she was so happy and said "thanks C...". I smiled. Then we went inside and C went to his class. The ceremony lasted about 2 hours and then we had to leave but not before taking some pictures. We took loads of pictures, lots of them with "his date" and more with us, his grandmother, his teacher, his classmates. It was fun. I had fun. Then we had to leave. But his teacher, bless her heart, took a picture of C with his date and that was such a nice one. Not sure I'm allowed to show you one on here. Wish I could but don't want to share what's not mine. I just wanted to share these two special things that happened with you. Both were really pretty special.