It's Monday. I'm feeling a little better today and the pity party is over for now. I'm sure it won't be the last time that I get overwhelmed with the way things are going but I just have to wade through it. I think the hard thing for me has been that our family has been through so much already with many things that I just don't understand why we can't seem to catch a break.
Mike and I met in January 2000. We were engaged in June of the same year and married in June of 2001. January 2002 our lives changed forever. Mike was involved in an industrial accident that could've killed him. He was on a scissor lift 20 feet in the air when it broke and fell over. Mike's partner jumped before it hit the ground and ended up with a broken arm, concussion and cut on his head. Mike rode it down to the ground and wasn't so lucky. He was in the hospital for a week with a broken pelvis, hip, foot and hand. His pubis bone was crushed and worst of all he has a compression fracture of the L2 vertebra in his back. I was 20 and he was 24. Our lives were never the same after that accident. Mike changed. I changed.
For 6 months Mike slept on the couch in our living room because he was unable to climb the stairs to our bedroom. Our dining room became his bathroom as he was confined to one floor of our house and it only contained the kitchen living room and dining room. I had to bathe him in the kitchen with a kiddie pool and a chair. I cleaned out his potty chair and go him dressed etc. It was really the first time in my life that I had to be self-less and put someone else's needs in front of mine. Being so young and being the youngest child in my house growing up this was hard for me. I had never taken care of anyone else before. No diapers to change or babies to feed etc. I was so used to being the one who was taken care of. I am honest when I say that it was rough and I didn't handle it very well. Mike was depressed and angry. He was moody all the time and it was such a change from who he had been when we fell in love. He was in a torso cast that came off when he went to bed and he used a walker to get around. After 3 months he was able to switch to crutches which he used for another month or so until his hip was healed enough to hold his weight.
After 6 months I made him go back to work. He was always home alone in the dark. He never opened the blinds turned on the tv or went out onto the porch. He just sat there. I was afraid he was going to commit suicide so I pushed for him to take the exam to get back to work. I thought it would be good for him to get out of his slump and get back to 'normal'. He took the test and passed with strict restrictions. He wasn't allowed to lift more than 10 pounds or be on his feet for more than 30 minutes at a time. His work abided by the rules for a while but then they started making him lift heavier and heavier things and working for more than 30 minutes at a time on his feet. It has been really hard on his body.
When I was 6 months pregnant with Baylee Mike found out that he is a type 1 diabetic. He started getting really severe cramps in his legs and was thirsty all of the time. When he would sweat it smelled sweet. I remembered seeing an episode of The Twilight Zone of all things about a girl who didn't know she was diabetic but a "bad guy" did because she was so thirsty. Weird how those things stay etched in your mind. Anyway, Mike went and it was confirmed. We have always had a suspicion that it had something to do with his accident but there is no way to prove it. So there was this new onset diabetes to worry about and learn about right when we were about to have our first child and were already so worried that we wouldn't know how to take care of her.
Three and a half years later Carson came along. From day one it has always been something with him. More therapy sessions and doctor's appointments than I could possibly count.
In 2010 things got so bad with Mike's back it required surgery. He was going numb in the legs and had become incontinent because he could no longer feel the urge to go. They fused his L5-S1 together and stabilized it with a cage that has cadaver bone in it. Totally gross when you think about it but it helped. It was 6 more months at home. By this time we have two kids that even though Mike is home, he can't watch. So every day they had to get up early and be out the door at 6:30 to go to my mother's house. Sometimes they would be there until 6:30 at night.
By the end of 2010 we got Carson's first official diagnosis, the 15q24 microdeletion syndrome. That opened a lot of doors for Carson in the sense of therapy options and support through the county financially (for diapers and wipes). He began going to 'preschool' the day before he turned 3.
Mike changed jobs in 2011 and that has been one of the better things to happen to our family. He is doing somewhat of the same job but his truck has a crane to do the heavy lifting and he is off on weekends as long as there aren't any emergency calls.
Carson's second diagnosis of Duane Syndrome of course came in November of 2013 and then the diabetes on Christmas. I just wish that we could catch a break. I am so glad that I am not working anymore so that I am able to take care of Carson but it's taxing and exhausting.
Carson cannot dress himself, bathe or use a toilet. He can only hand feed himself and can't use utensils. He just now learned how to drink from a real cup but he doesn't have the concept that it has an open top and will spill if not placed right on a hard surface. His walk is unsteady and he staggers like he is drunk. He doesn't play or watch tv. His iPad and the vacuum are his only friends. Because he doesn't speak it is very hard to carry on a conversation even though I KNOW he understands much more than anyone will ever give him credit for. And now I have to check his sugar, limit his food, count every carb that passes through his lips and then stab him 30 minutes afterwards. It's so unfair.
His eyes have failed him. His ears have failed him. His fingers, his smooth muscles, his skeletal muscles, his brain, his nerves, and his senses have all failed him. We don't know if he can smell or taste either. And now his pancreas has failed him. We know that we will have to continue to monitor his heart and his kidneys. I just wish that he could have something go right for a change. He is such a sweet happy kid and it just seems so unfair. He will never lie or cheat or steal. He is pure and honest and everything that you could ever wish for in a child.
Baylee of course is feeling this from a whole different perspective. She already has had to do so much for Carson, to give up so much for him too. I don't know what it must feel like to be her and have so much attention given to someone else in the family. We try to make it fair. I swear we do. It's just HARD. I tried to get her to read the pamphlets they sent us home with from the hospital but it's almost like she doesn't even want to acknowledge anything is going on. Maybe one day she will just break down like I did and it will be what she needs. Maybe we just need a girl day. Just go and hang out and eat as much junk food as we can until we get sick since the boys obviously can't do that anymore.
Well, we're off to school. This is going to be interesting.
And as a little note: Type 1 diabetes is NOT genetic. Mike did not pass this on to Carson. It just happens to be that they both have it. TRUST ME. We asked. :)
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