I promised you I would be introducing you to some incredible families in the coming weeks. Today I'd like you to meet Beau. Beau is 12 years old and loves music and puppies. His mom Michele wrote this piece for us.
My son Beau was born 9 weeks premature, he had a heart defect and was a very sick little baby. The doctors didn't think he would make it through the night. But Beau was a fighter. A few days after he was born we were told he had Down Syndrome. No, actually we weren't told he had Down Syndrome, we were told he had Trisomy 21. Trisomy 21 didn't sound so bad, maybe an operation and he'd be all better. Then the doctor told us it was Down Syndrome. Still, I didn't think that was so bad. I mean a few hours earlier we were happy that he hadn't died, so this didn't seem like that big of a deal. Beau was a very sick baby and the weeks in the NICU dragged on with progress and then setbacks. Not to mention that when you spend so much time at the hospital you start to get involved with politics of the staff and see the difference in care from one doctor to another and how one doctor will start one course and another will change it. It was an exhausting, emotional roller coaster. I am thankful that Beau was our first child because I can not imagine those weeks going back and forth from the NICU while also having another child. Then came the time for Beau to come home. I did not want to bring him home. I was fine just visiting him. The thought of being responsible for caring for this sick baby terrified me. He came home with oxygen and a heart monitor and I swear I didn't sleep for a week, we were so afraid that he was going to die. We just stared at him. I remember our first visit with the pediatrician after he came home. He said "You two look like crap, are you sleeping at all?" Of course we weren't, you just sent us home with a sick baby that I have seen stop breathing on more than one occasion. Hard to relax when all you can do is worry. He told us to go home and sleep, Beau would be fine. So we did, and he was right, Beau was fine.
Open heart surgery at 4 months old, seizures that made him lose every milestone he had gained, severe reflux that made leaving the house impossible because he threw up all the time, and not just a little spit up, projectile vomit across the room. I'll never forget one time we decide to go out to eat and there was a wait. The lobby was full of high school kids all dressed up for homecoming. Whenever Beau would throw up he gave us a warning cough and then it was time to batten down the hatches because he was going to blow. So we were sitting there and I hear the warning cough. My husband and I look at each other in terror and we both leap to run him outside, leaving a trail of puke behind us. That cute girl next to us has no idea how close she came to having her dress baptized by Beau.
Beau is twelve now and because of his complications from prematurity he has many developmental delays. He is g-tube fed, non-verbal, and unable to do any tasks for himself. He has had over 10 surgeries and during his first year of life he had nearly 50 doctor appointments and therapy 3 times a week. Despite all of this, Beau almost always has a smile on his face. He does say a few words, "puppy" "TV on" "puppy DVD" "no" and "baby Beau". His first words in the morning are "TV on" and he will pat your leg and say it a few times just in case you missed it. If you sit long enough eventually he will come over and crawl into your lap. He loves to snuggle. He loves music and his already big smile will swell as he rocks to the music.
When I was asked to write this piece about my son with special needs I drew a blank. What are my hopes, my dreams, my fears for my child's future? Umm, I don't know. I don't even know what to make for dinner. So I went to the internet for inspiration, surely that would give me a launching off point. I found this quote.
"Perseverance is not a long race. It is many short races one after another." - W. Elliot
I think this sums it up for me. Maybe I am a coward, maybe I am too busy, maybe I am too disorganized to think about the future. I try to take it one day at a time. One short race after another. That isn't really true, I don't think about it I just do it, like walking. I just do it. I don't worry about it, I don't dwell on it, I just do it. I change poopie diapers on a 12 year old and g-tube feed him while the rest of the family is eating. I dress him, I bath him, I change him again because a 12 year old pees a lot and a diaper can't hold it all in so we are perpetually changing clothes. I never really think about how unusual this is until he isn't around and then I realize how much work and time it takes. We also have a 7 year old son who is a typical as typical comes. And as much work as Beau is, Lucas is 10 times harder. He talks back and doesn't listen and challenges me on everything. In many ways he is like an only child because Beau doesn't play with toys like he does so he doesn't have to share. Beau doesn't eat cookies so we don't have the "his cookie is bigger than mine" fight. Beau doesn't ask for anything, except for puppy DVD and TV on. He just hangs out being Beau.
I'll be honest. I don't want to dwell. I don't want to know about the big fire at the end of the road or the cliff that is coming up. I guess it's the same philosophy that makes me say that I'll start my diet on Monday, I will put away more money for retirement later and I'll floss my teeth. Terrible, I know.
So what do I want for Beau? I want him to be happy, which I think he is. As I write this he is sitting next to me giggling. He is always happy. I know that is a stereotype of people with Down Syndrome but in his case it's true. So when I think about it, that's what I want not just for Beau, but for myself. Just be happy with what I have. If the world was the type of place where everyone had the simple joy that he has, wouldn't it be great?
Enjoy the moment, don't dwell on the past.
What I also want for Beau, especially if I am not here to care for him, is for someone to appreciate and love him the way we do. To see the joy in the simplicity of him and not be scared of his needs. He is an absolute joy. I'll be honest in that I have wished on more than one occasion that he didn't need my help for everything, that he was more "typical". I feel guilty for those feelings because I honestly adore him. I can't imagine my life without him. Being his mom makes me a better person. So for now, I will do everything I can to help him live up to his potential and just enjoy him for the perfect angel that he is.