I am sitting here with lots of thoughts the last few days. I wanted to come here and write about it all. I wasn't sure what to entitle it, so I am simply writing about Jamie. There is so much in my head and my heart right now that I am not sure where to start or where it will end and I am sure it just might ramble a bit as I think of things, so please hang in there with me!
Did you know that any time the human brain is without oxygen it can cause problems? Well, I am sure you are. Even if at such a time as birth, for a few minutes, it can change a lifetime, as I am convinced that is what happened to Jamie, my second child.
He was a big baby to start with so the doctors, without asking, or telling me anything about it, used the vacuum extractor to help 'pull him out'. Come to find out later, he had to be revived, with blow by oxygen. These two events, I am sure, changed the course of all of our lives. Mostly his.
We noticed things right away....most people thought he was deaf as he wouldn't respond to his name. I knew otherwise. Many things added up and he was tested. And tested some more.... It was decided that although he had many of the characteristics of autism, he did not fit the criteria at the time to be diagnosed that. They called it 'probably Pervasive Developmental Disorder' BUT said he wasn't that exactly either....that Jamie was a 'rare bird'. Really. In my searches I came across Hyperlexia. Look it up...there is a book that was written on it. It could have been about him.
As a parent when you learn that your child has a disability, so many things are felt. It is a form of grief. You grieve for what will not be. The things you won't do or see him do. You think of what if, what could have been. Then you get to the reality. The WHO he is. and all of the stuff that goes with that. We were put into a world of IEPs...strange looks from those who did not understand, a world where your 4 year old finally reaches up and touches your face and says Mom and it is the best word you have ever heard. Jamie has been my education. I have learned so much from him about so much. The good and bad in the world. I have seen much of both.
And we have made sacrifices. Some as simple as no family pictures. Because of his disability, he avoids his dad and oldest brother when he can. Since he was 2 , he has reacted to his father's cough. Many years later his brother was added to that. Now of course they don't cough all the time, but he does not want to take that chance. If you see him and he is plugging his ears, that is why.
What this means is great. Meetings, doctors, shopping , anything is done without them. Every day things like family meals no longer happen. Christmas Jamie spends opening presents in his room. I am his parent. It is hard for me to not be able to get that support from another parent who can take over some of the 'stuff." It is hard for him to not be able to be there. Like the last few days.
In October Jamie out of the blue had a Grand Mal Seizure. It was THE most horrific thing I have had to witness. I cannot find the words to tell you. After appointments, tests, there was no reason found. No medication was prescribed because with no reason found, and only one it isn't guaranteed that it will ever happen again....actually only a 20% chance that it will in 5 years.
Well you know us and the odds....yeah it happened again. Sunday morning. 6:50 a.m. I am at the computer and hear a loud crash. I knew in an instant it was happening again. I ran in there. While it is happening, I can only watch. Once he came out of the body shaking part, it was another 10-15 minutes before he was conscious again. Another 10 or more before he was able to talk. When he first got up on his own his limbs move like a ragdoll and he could not walk right, it took awhile before he was able to talk with making any sense. He would not go with the ambulance people, so I had to take him to the ER. They decided to admit him. Little did we know it would be 24 hours before we actually saw another doctor. I do appreciate the nurses there, they were amazing. And I do give credit to all of them and the doctors for talking TO Jamie, to asking HIM the questions, to giving him the respect of treating him like a person. I can't tell you through out all his 23 years how many times that does not happen.
Yesterday in the hospital was exceptionally hard. I had no relief. As I have mentioned, he avoids his father. He was able to bring me the computer the night before so I at least had that. Jamie saw him, said I love you, goodbye and was clearly agitated. That has to hurt. It is hard to see and hard for me, knowing that it is only me there to deal with him , the doctors, and everything that came up. All day he begged to go home, he cried , every minute he asked to go. Wanting to go to Shopko and home. No matter how many times I would say yes, or later, or when the Dr said it was okay, he would ask again. Then again. I try so hard to have patience and understanding. Sometimes I get tired. And frustrated. I walked out of the room at one point, needing a break....tears in my eyes. I wondered, why....yup again, WHY. Why did God make him this way? and WHY of all people to have to deal with the seizures and tests and medications now having to be taken....WHY Jamie???? Why the struggles he has had, is having , will have?
and dear God, WHO is going to be there after me???
I worry about that often. Who.
And there I end....because that my friends, is what is on my mind right now.....