Some of you may remember and many others will not. Parts of this story have been told before but much will be new. This is written not to seek pity or sympathy for us but to possibly help on our path. I am Perfect Disorder aka Indy Hippy once upon a time and this is the story of my sons and the one who fights to survive every day with each breath. My wife and I married a little over seven years ago and we had our first child right around six years ago now. He was born some five and a half months early and died less than two hours after birth. He was so small that he could fit in the palm of my hand and he fought for survival every second he lived. When he died we blamed each other and even the doctors. I was completely numb. Extremely cold. It took a long time for the reality to sink in. Why him, why us, why was life so damn cruel? These questions wouldn't be answered for another six years. Not h before we lost our second son as well. He was born some two years later only two months ahead. He lived for almost twenty four hours. However the nurses at the hospital punctured his lung and he too died. He was born with clubbed feet. So beautiful. Before he died I only got to touch his hand didn't even get to see him. My wife didn't even get that much. When they returned his body to us we dressed him in one of his outfits and they placed him in a crib in a side room. We wanted, no needed to see him..... I cried for most of the day beside that damn crib. Why us? No answer, no fing answers at all.... I held his small cold hands and looked upon his face waiting for the eyes to open. We buried them next to each other in the family cemetery. Then a year and a half later came Barrett.
Any words of comfort would never be enough. Again, I am so saddened by this and sorry...... I cannot take it when anything is wrong with one of my animals, so like i said before, i cannot even imagine the suffering of it with 2 lost children and one in such serious medical trouble....You must want to rail at the heavens every day......and i imagine it would be hard to remain so classy and dignified as both you and your wife seem to do.
Thanks moon for your words. When Barrett was born we held our breath hoping that he wouldn't be the same. At first he seemed relatively normal other than being somewhat unresponsive. For some reason that I can't recall the doctor decided to do a spinal tap and it was directly afterwards that it hit the fan. He stopped breathing and everything. They had to put him on a ventilator and take him to another hospital. A few days later the results came. He has a rare genetic disorder called (may not spell this right) Myotubular Myopathy. Essentially it means that his muscle cells formed wrong and as such he doesn't have much motor function. The doctors had to perform a tracheotomy and put him on a ventilator full time. We were told that he will probably never walk, eat normally, breathe normally, talk etc. He also has an excessive drooling issue which due to his weak swallow and coughing abilities often gets saliva down into his lungs. The doctors also gave him a g-tube which is a feeding tube that goes directly into his stomach. The rest of this thread will be about his disorder, how we handle it and most importantly the progress and setbacks.
Barrett is a lady killer, one of the first things he did after recuperation was to smile at the first damn nurse he saw. A big ol' lopsided grin. He hasn't really stopped smiling since. Especially when women come around. He just grins from ear to cheek per se. Don't get me wrong he has his bad days. Yet no matter how bad, and they can be very bad, he always goes right back to smiling
Oh my. I honestly cannot imagine what y'all go through on a daily basis. You both must be incredibly strong as well as love each other very much. Even though these horrible tragic losses were no one's fault (but I imagine I'd have a problem remembering the nurses puncturing the baby's lung) often couples don't survive as couples after things like this. My heart goes out to you both as well as Barrett.
Thank you lynn. I won't claim that our relationship is all chocolate and roses but we get by as best we can. So more on Barrett. Try to get it up to date here. His disorder is genetic and apparently exceedingly rare, 1 in every 50,000 male children. It can only be passed on maternally and is currently incurable. When passed to a male there is a 25 % chance that they will be severely impacted like Barrett and when passed to a female a 25% chance of her being a carrier. As such we have decided not to have any more children because we cannot bear the thought of condemning them in such a way. Also life expectency is often not past infancy and almost never past puberty. However Barrett has already beaten the infancy part and we hope for puberty as well. Barrett has already made many great strides in his condition. He can somewhat talk baby wise of course, he can remain off the vent for at least five hours at a time, and just three weeks ago he started being able to sit up by himself and hold up his own head. These are all works in progress of course. He is already further along than any of his doctors predicted, he has a hell of alot of doctors. Mentally he is very responsive he just has a hard time translating it to his body.
Took a while to get the time to do another update. My wife has been trying to teach Bear sign language or at least get him used to it. There hasn't been much progress yet but he is very young and still doesn't have much....Oh what's it called... fine motor control. The doctors have predicted that he is going to be around six four and that leads to the question of how we're going to move him around when he gets older. The docs are talking about a sling but how realistic is that? One person trying to lift a six four 220 some pound kid by their self? Anyone familiar with a similar contraption?
I am not familiar with it but I think it is called a Hoyer Lift. When I was reading the Alzheimer's board some people would mention them in reference to caring for their loved one. Seems like it might need more than one person if caring for someone larger than the caregiver. I am sure there would be videos online showing how to use the equipment.
I'm so sorry to read of your struggles...it takes an especially strong couple to get through this. My hat is off to you both. My marriage brought two miscarriages before we had our girl. One of those miscarriages, my wife brought out to show me in her hands. It looked like a long, dark red root. She said "I'm guessing this is our child"...I'll never forget that, I was in a weird mood for a while after that, as was she. We just don't know what it's all about, this thing called life. I live by Mom's saying, it's a great life if you don't falter. Be strong and blessed and hang in there. magickman
Thanks for your thoughts magick. Within we find ourselves meanings of life. I find life to be like a paint upon a canvas these days, bright, full of an accepted purpose, and the painter is completely random. On the note of Barrett we have found a need to let his grandmother keep him at her house, for now. After my seizure it was determined that I currently cannot watch him alone for obvious reasoning. We go to see him 3-4 times a week. I must accept the empty feeling of the house sometimes.
Yes this is hard too. All of it is. This is probably good for the grandmother! And a big relief for you, to stay a bit more relaxed after the seizure. Grandparents can be wonderful for your situation. I don't know what I'd have done w/o my folks. Good for the kids too. They can sense if you're having problems so this is good for all of you. Glad to hear it, keep on keepin' on!
