Today has been a very hard day. It is not only a Friday but it is also the 9th of the month. George would have been 10 months old today. Instead of holding him in my arms I am holding only memories in my mind/heart. He should be here crawling around getting into everything...insead I have his ashes on my fireplace and around my neck. In two months we would have been celebrating his first birthday and me being who I am, a planner to the core, would already be working on that. Instead I am left working on something to do in his memory to keep it alive not only for ourselves for for others and to know that his life just had so much more meaning and that there was a point to his death.
So many times I look at his picture and can't believe his is gone and other times it feels as if he was never here. The day that he died I lost part of myself and it is so very hard to keep it all together and keep moving forward. He was the child I never had to try with or learn how to be his mom. We were just so connected that I knew what he needed and never doubted myself where he was concerned. I miss him laying on my chest sucking his thumb just content to be with me and somehow no matter how bad my day was all of it would melt away when I held him.
I love all my boys and have a different connection with them. With George it was as if I had known him my whole life. The other boys I had to grow with and learn about them and how to handle them and the things about them that I just didn't always understand. With George I just didn't have that, we were kindred spirits who's souls had been intertwined forever. I never really thought that was possible but it really was and to finally find it and then loose it in the blink of an eye, is just so devestating. Maybe that is why in so many ways I feel so alone...I lost the one person who truly understood me without any words needing to be spoken. I didn't have to pretend to be someone I wasn't or work for his approval. I know he was only 4.5 months old but there was just such a strong connection there...maybe God gave it to us since he knew he would be taking him...I don't really know or understand it all.
The last few days have been kind of crazy with a lot of things transpiring. It looks like we will be taking a trip to Georgia August 10th to meet with a Mito specialist down there on the 11th. I happened to meet her years ago when she worked with the physician who had done Joshua's biopsy. She happens to now have a virtual practice where she manages the children's care from GA but works with the docs up here. She of course wants to see them once a year and especially the first time around to get a grasp on them as individuals and how the disease affects them. Unfortunately, she does not take insurance and the cost is quite a bit not to mention the trip but in all reality it is priceless to finally be able to be mom and not their doctor. I'm really hoping that this works out, I have a very good feeling about it all.
In many ways I feel this need to have one doctor willing to do this sort of thing before the baby is here. I really can't live what I did with George. There were so many things going on and I kept trying to convince docs who didn't think there was something wrong that there truly was something wrong with him. With me trying to do anything to get a doc to take an interest there were conflicting ideas and in the end there was not one doc overseeing his care although all of them were told what the other was doing. I just didn't know enough and trusted their judgment when it came to telling me what to do and may times I thought I was just being over protective.
Many times I was made to feel, even by other parents who had children with the disease, as if I was just wanting something to be wrong with them or that I didn't have a right to worry since they weren't really that. Even after he died I was made to feel like an outcast among them all being told that I didn't know for sure that he had Mito and that it demeaned their child's fight?! I really thought we were all in it together for the greater good of our children but apparently I was wrong. Since then I have kept my distance from docs, other parents, and even ended relationships because they were just not good for me to be in. I was told on numerous occasions that my kids weren't as sick and didn't need the care that others did, and I respected that but in the same token they do/did deserve as much care and attention...they are still at a higher risk to die...George proved that.
I do worry for the new baby but I am trying to put things in place this time around. Our pediatrician is a good guy but he is good for ear infections and vaccines. He is willing to work with any doc willing to call the shots but he is not all that into being the one to do that, which is hard for me since Ken(the boys old ped) always took the lead and kept up on all the kids care. I know I can't prevent anything from happening but I will do my best to make sure that I put things in place to keep on top of this. I guess now they will have to take me seriously...it only took my son dying to prove I was not crazy and that my kids are affected quite a bit dispite the fact that they look fine. George looked fine the night I put him to bed...it was the last time I saw him alive. Many of his doctos and therapists were just dumbfounded by it. I try to not hold resentment but I find it sad that it took him dying to get them to pay attention...by then it was just to late.
I know he is in a better place, and I know it is selfish of me to want him back but God I want him back. Living with this hole in my heart is just so hard to do. I had already been through so much in my life and felt a great disappointment because of that but got over and through that. Nothing could ever compare to this though. I did happen to find another mom in England who feels very much the same way I do...she had very much the same connection with her son that I had with George. Although it does not take the pain of our breakign hearts away, we somehow find solice in the fact that there is someone who truly understands on so many levels. Life will never be the same again, there will always be what if's and all sorts of other mixed emotions. We will live our lives to the best of our ability as we always have but it will always be with part of us forever missing.
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