He asked me. i couldn't answer him. He's 5 years old, he shouldn't have to hear why. I don't know what to do about his questions, I don't want to lie but I don't want to take normal from him. How am I supposed to look into that sweet face and tell him he's sick and there is nothing we can to do to make it better?
I don't want to lose Robbie. I don't want to see a world w/o him. I don't want to watch him weaken. I want to fight. That is almost the cruelest part of this whole thing. There is no fight to have. We can raise money for charity, i can blog, we can buy shamrocks. That's all we get, hope and prayer for medical breakthrough.
I talk a lot about my pain because well that's mostly the only thing i feel right now. I can fake happy for my kids, I can let everyone think I am being strong, I can laugh but all I can feel is black dark pain. Sometimes when he is trying to push my buttons I just pick him up put his head against my shoulder and hold him so tight he gets mad at me. The only time I feel even slightly strong is when I have him in my arms.
I have never really experienced extraordinary tragedy. i have lost people in my life but nothing that compares to this. I really don't understand how this happening. I don't have a family history at least genetically linked to me. i just don't understand this whole spontaneous mutation of a cell thing or why I didn't even know that could happen. Most of all the thing I most fear is finding out I did carry this disease, that there is some family history we weren't aware of, or that my grandma was a carrier but she only had girls and my mom only had 1 boy so i mean it could come out that I m a carrier. i don't know how i will live that. Mom, i will live w/ it, I just don't know how. don't freak on me.
if i am a carrier then i may have passed that to my girls. i honestly don't know how my husband will continue to love me if he finds out I sentenced our family to this hell for generations to come. I hate the life I have right now. I hate this disease, hate it.
I want a cure, right now. I pray every night for a medical breakthrough. Which is kind of funny praying to a god that lets this disease afflict innocent children. All the stupid things people do to there bodies, celebrities that use drugs and alcohol to slowly kill themselves because it's so damn hard to be rich and famous. they get to be healthy and strong but my child has to die a slow horrible death. where is the justice?
I love my little bubber, he is my heart. Robbie, Kelsey, Madison are treasures the world deserves to know. they all deserve happiness. i don't want to lose one of them. Please God, if you are reading this don't take Robbie, please give someone the ability to end this hell for every family.
One of the most difficult things to overcome, is the death of a child, and I speak from firsthand experience. Actually, "overcome" isn't the right word, b/c I dont believe a parent can EVER overcome losing their child. I never have, and it's been 11 years since my daughter died. In fact, I lost her twice. The first time, was when she was 2 days old, and I gave her up for adoption. Seven years later, I found out she was tragically killed by a car. So, maybe "accept" is a better word. Accepting the loss of a child, is no easy feat. It's heart wrenching, emotionally draining and just plain hard. It is the final stage of grief, and grief in it of itself, is a very long arduous journey.
ReplyDeleteNo one should have to go through what you are going through, and every time I read what you are feeling, or what kind of day you have had, it makes me feel so horrible, that you have to not only watch your son go through this without the ability to stop it, not to mention having to tell him whats going to happen, but that those stages of grief are waiting in the future. It's unthinkable. Unimaginable. Unfair.
I can never truly, fully understand your pain and anger, because I didn't have to watch my daughter die. But, losing her was so painful, I sometimes couldn't breathe. To this day, I avoid talking about the situation that surrounded my giving her up and then losing her. It's just too hard. It still feels like it was yesterday. I blamed God for taking her. I went through a phase where I honestly didn't care for Him. I was angry and renounced my spirituality. Like you, I wondered how can I pray to a God for strength, that took an innocent child from this Earth so tragically?
Nicole -- know that someone is thinking of you and your family daily, and hoping for a cure.