Saturday, July 9, 2011

July 9, 2011 - Day #36

If all goes well, we'll be talking about going to the children's hospital in Boston for transplant soon. I expect we'll be headed that way by Fall. I am scared to death.
Spending only 1/2 time with each of my daughters is taking its tole on me. I'm exhausted and I miss both of them so much. No one takes care of them like I would. They're fine but *I* want to dress and bathe them. *I* want to kiss away all of their tears. My heart is breaking.
When we go to Boston, I will have to spend most of my time down there with Riker. I will no longer be able to drive home every other day to spend time with Valentine. I will have to rely on others to bring her down for visits. Every part of me is screaming in protest to this. What kind of mother only gets to have short visits with her 2 year old? How will this impact my sweet girl? She's already so different.
I know that when people tell me we'll get through this they mean well. They say that children are resilient and that we will all be stronger for this. They tell me that Valentine won't remember this. I know they mean well but it doesn't help! No mother should ever have to chose between her children. No mother should ever have to be part time with any of her offspring.
These people don't know and understand my very exceptional 2 year old girl. She remembers EVERYTHING. She has memories from when she wasn't even 1... before she could even talk. I know she will probably not remember this in great detail when she's 30 but people are crazy if they don't think it will shape the person she'll become. And maybe she'll be a better person for it. Maybe we'll all be better people for it. But what parent doesn't want to shield their children from all the pain in the world? I don't want her to be a "better person." I want both my girls to feel safe and grow up normal.
My husband and I planned our family. Our children were supposed to be raised in a stable family with their Mommy and Daddy both there always loving them and taking care of them. I feel robbed. I have been robbed of my time with my children and robbed of my time with my husband. There is not enough of me to go around.
I know I should be basking in the good news we received only a day ago. It's hard, though. This is all too real and our lives have been changed forever.

1 comment:

  1. First, let me say how truly sorry I am to hear this. I can relate a little to how your world gets turned upside down when something happens to your child. My nine month old suffered a stroke in utero, resulting in hemiparesis and cerebral palsy. I will keep you and your family in my thoughts and prayers.

    I currently have a Causes tab on my blog where I display causes dedicated to raising awareness and funds to help children. Would you mind if I featured your blog there?

    Also, I'm looking for guest bloggers willing to share their stories about raising a child with special needs. I know you are already strapped for time, but if this is something you're interested in, I'm sure my readers and FB fans would love to hear your story.

    My blog is http://familiescopingwithinfantstroke.blogspot.com if you're interested in checking it out.

    Again, my thoughts are with you and your family.

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