The second in our series - "Hope and Dreams". Meet Justin Hunter, Samson, and his family
We adopted our youngest child, Samson, when he was eighteen months old. He was placed in the protective custody of the state due to abuse and neglect. I hope his biological family wasn’t surprised that breaking their child’s leg and arm was a parenting no-no. The state tends to frown on that sort of thing. I’m not sure of the particulars, but I believe that his parent’s avoided prison by signing away their parental rights. The fact that they still have other children still living in their home is another way life tries to make you insane by attempting to make sense of it.
Samson would never have come to us if he weren’t labeled a ‘difficult placement’. While in the hospital recovering from his wounds, the doctors discovered an anomaly in a blood test. Further testing discovered that our little Samson has Duchenne Muscular Dystrophy, a degenerative muscular disorder. This is a fast acting form of muscular dystrophy. Samson will most likely lose his ability to walk by the age of twelve. He will have breathing difficulties and probably heart disease beginning at the age of twenty. The longevity for people with Duchenne’s is about thirty.
We have two other adopted children in our home as well as a foster child. These children have their own issues, but their difficulties are cognitive and emotional, not physical. Bringing this new child home would bring a new set of challenges to our family. The good news is that my wife, Crystal, and I are incredibly stupid, so deciding to bring Samson home was a simple decision to make.
The bottom line was that we don’t hold any of our other children’s past against them, especially (and obviously) since it was out of their control. There was no reason why we couldn’t open our doors to this little boy who needed a home.
Samson is now two and a half years old. He has beautiful bright blue eyes and fine blonde hair that comes down to his shirt collar. He’s everything you would expect a child to be at his age. The fact that he is the youngest out of four kids hasn’t spoiled him one bit, no sir. Of course that is a vile lie. He’s spoiled. He is the most spoiled child in the world. I don’t help matters by calling him, “my precious little dewdrop” or “my angel straight from heaven.” In fact, I just put him in time out for smacking his brother with a wooden train track piece. His newly bruised brother came to his defense saying, “He’s just a baby.”
I was asked to blog about my hopes and dreams for Samson. I understand how my hopes and dreams for my special needs child will differ from those families who have typically developing children. The fact that I have hopes and dreams for my kid shouldn’t be a surprise to anyone, nor will my first dream be a surprise to any parent who has a child with special needs.
I dream for a cure. I believe it can happen in his lifetime.
I am not a fool, and I am not in denial about my son’s diagnosis and what that means for his life. However, advances in medicine, treatment, and robotics that can enhance BOTH his quantity and quality of life are happening at an incredible rate. I hope that one day the degeneration of his muscles can be stopped. I hope that robotics can give him autonomy when he gets older.
My second dream is that he will eventually be able to live on his own. At least for a while.
Having a child with Samson’s disability actually frees me up from a lot of worries I have for my other children. Samson will probably be living at home for the duration of his life. This places him under my protective wing, saving him from all the suffering and harm that this big bad world has in store for everyone who ventures out into it. My other kids will move out, get jobs, have families, make choices (hopefully good ones) and live out their lives how they see fit. Samson will have to do none of these things. Sound great? It sure does for me. Like any parent, I don’t want my children to suffer. Samson will have a different opinion for sure. I am the greatest father any child could want, but living with me every day for the rest of their lives probably sounds like hell on earth to my progeny. My wife probably has the same opinion about living with me, but she is a kind person, and wouldn’t ever say that to my face. My point is that all of us love our parents - none of us wants to live with them when we grow up.
Every person wants to live their own life and make their own choices. Samson will want to be his own man. Crystal and I will do whatever it takes to make that possible. Whether it is possible will remains to be seen.
This might sound a little odd, but my last big dream for him is that he eventually gets a girlfriend.
I’m worried that people will feel sorry for him and not see the person beyond the disability. I hope that someone somewhere will love him for him. Maybe I should get him a $500,000 life insurance policy. The babes will come a runnin’. I’m kidding…sort of.
The bottom line is that I hope his disability doesn’t negate love. I think this speaks for every parent of a child with special needs. We hope that people can see beyond the disability to the person. I want Samson to have the opportunities that many of us take for granted. I want him to be able to make decisions for his own life. There’s a lot about what I want for him here, but it’s really about what he wants. I dream that one day he will eventually get to make that choice.
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.