Today was an ok day. It wasn't good and it wasn't bad so I am at least greatful for that. Today we went to Rutgers in New Brunswick to participate in a study they are working on with Tourretts Syndrome. Richard was diagnosed with this when we went to Houston, TX a whie back. I thought the docs were off their rockers until I actually read into it and boy were they right. Having the knowledge made our approach in dealing with Richard completely different. I was so greatful for that diagnosis, I can't even begin to tell you. It gave us a greater understanding of why he was who he was. The diagnosis also pertained to Richard's biological father an explained so much about his issues too.
I am a huge advocate for being part of studies. In the grand scheme of it all I know it won't do much for me or my children. The way I look at it is that it gives those yet unborn a chance to not have to suffer the same fate as that which our family and so many others struggle with daily. If people just dealt with their own issues and didn't think of the greater good then none of us would know anything about diseases we now have cures and treatments for. There is such a need to look past our own needs when these opportunities arise no matter what the disorder or disease may be.
The way that it runs with Rutgers is htat they are basically a bio bank. They collect information an blood and store it so taht other groups can request things based on their studies in order to do research. The study on TS is now going international with requests coming from Japan and other countries. We had to fill out a book for each of us and our family and personal medical history. Of course ours is not simple an when you throw in that Richard has a different father, it really becomes a little more complicated to say the least!
With the recent passing of George, there were bound to be questions reguaring the metabolic issues we have in our family. I wound up talking circles around the psychologist and sparked a huge interest in the genetics doc there who happened to only be on speaker phone due to his own illness. We have had DNA sequencing done to an extent and what has come back, has come back fine. The part that has intrigued them the most is that at this point in time there have been no issues with Richard through clinical and swabs done at St Chris. At this point they have not found any Mito issues with Richard. That being said, there poses many questions from a genetic standpoint where these people are coming from. In order to get an accurate case study they need to have all of this information.
It has truly brought a new light to them and how they are looking at our family. I was told they will be calling me, espeically the genetic doc handling the genetics issues. To say they were intrigued would be an understatement. They asked if they could request medical records on the kids and Hugh and I. The other thing they want to do is talk to the researcher at St Chris running the swab testing. They also asked me about information on the baby and how things happened with him. I told them that shy of what the medical examiner has, there really isn't much in terms of labs or anything for him. On the way home I realized we had banked his cord blood so I don't know if that is something they will need to know.
In the end there was just to much coincidence with the baby passing and his big brother's issues. Whatever happened to him was truly linked to whatever is going on genetically with the other kids. I don't know exactly what is going on with them all but I do know that with it all being sleep related that there is a connection somewhere in all of it. Knowing won't change anything and won't change what happened to him but I don't knwo if it would be able to help some unborn child someday that a stranger has or what about my own grandchildren? There is just more then meets the eye. My kids may "look fine" but there is more that is going on with them. They don't suffer on traches and all the severe issues, they have issues that no one can visibly see or put a name to. Whatever it is, it came as a thief in the night and took my angel.
I just feel that if I can save some other family from knowing our pain then all of this is not in vain. We don't live our lives for this but rather know our lives can help others to live or live better. The only things that these studies require are a few blood draws and a little bit of time answering questions. It has to start somewhere. I know I will not get answers for myself or my family in any of this but I know that had others not been decent enough to do prevous studies, I would not know what is going on with my own kids.
It was kind of odd talking to this man who had a doctorate from Yale. In many ways I was talking way over his head! He was a psyciatrist that knew a lot about TS, ADHD, and OCD. When he asked me how I was handling the baby's passing, I told him that I had my moments but I knew that dispite everything I know I cannot bring him back. I cannot change whatever happened to him and I have to live for those who are here still. He seemed very shocked by my response since we are less then 4 weeks into loosing him. He was also shocked over the relationship that I have with Richard's biological dad. It just all threw him for a loop and he said he wished more people could look at things the way taht I did. I told him my heart is broken but that life goes on and that there is a purpose to everything. He just kept saying he could not believe that I was that together considering all the things that have happened in my life in such a short amount of time. I left there thinking that I can't immagine being any other way.
George was the light of my life. Loosing him just tore me appart. It has made me relook at life and how we cope with it. I know that we are doing what is right and that our angel is looking down on us smiling. My arms ache to hold him and every fiber of my being wishes he was here with me but I know that life goes on for us. Each day is a struggle to figure out how to do that but I know we need to give ourselves time and know that it won't be an easy or fast process. I know that the reason it hurts so much is because we love him that much and that is why it is all so hard. I close my eyes and see him smile and laugh and feel in my heart his very presence, especially when I am having a hard time where I miss him immensly.
No comments:
Post a Comment