....so I have cried my eyes out back then and now. I remember helping them over the next two days make the arrangements for our little man. It was so hard. I even went so far as to help my brother dress Tyler at the funeral home so that P would not be able to be around him. My contempt and loathing for her was so strong most of my life but at that time it was overflowing. My friend would not help- he did not want to have those memories and I understand now. At times I wish I did not see the images in my head that I have. They have faded some with time, thank goodness. Everyone praised my strength for doing everything I did but my hatred was stronger, that's how I was able to do it. Deep down I know that she had something to do with his death. And she has to live with that if she did. I will believe that until the day I die. And I do not think I was the only one. We buried him on Valentine's Day. I have not celebrated that holiday for the last 19 years (my husband & I celebrate Sweetest Day- thank you Hallmark for creating it) :).
My brother and his wife divorced. His 2nd wife and him had three children but the monster that she is did not want to have anything to do with Tyler so his kids no nothing of their brother. Tyler's grandma still grieves for him I think more than anyone. I know that it hurt our family but it was almost like they all removed themselves from it. We definatley do not have a close family at all. And we are a very small family but we do not know what side of the family has the mutation. It has to be our dad or P because both my brother and myself have the gene mutation. I am very aware because of my kids. EB will end with us. But I have cousins that are newly married and what if it is that side??? It still just amazes me that 19 years later and not everyone in the world knows what EB is.... it affects 1 in 20,000 births people.
I know that everyone says that God has a plan for everything- I do believe that but sometimes it is VERY HARD!!! Like why did my nephew have to suffer, what was the purpose??? I do not see anything that came out of it except sorrow. And all of the kids and adults that suffer from it- it is agony. The doctors said that Tyler did not know any different so it may not have been that bad for him, a constant tingle like when you have a burn but how did they really know- he could not tell us. All of the parents who have to watch their kids suffer. Watch them cry, hurt, weeping with them....what is it all for God. Most of the time you will never know his plan but this sure would be a great disease to cure!! Prayers non-stop to God for a cure. I do believe that I will never truly understand his plan in this situation, that I just have to accept it. It is very hard-- still. This is where my faith stumbles.
But I know that I will never stop praying for a cure. Never stop having faith that it will end. That I will never stop plugging away for awareness. When I think about quitting, Tyler visits me in my dreams (or is it God).
Please everyone share your awareness!! Donate so the brilliant scientist can find a cure!! Let's end this HORRIBLE disease so no more families have to suffer!! #EBawareness #CureEB