Monday, June 13, 2011

Praying Prayers of Peace and Love.

The Mito community is small. It's not a widely known disease and/or disorder. In fact, outside of the hospital setting, all the times that I've mentioned Wyatt's diagnosis I've then had to follow up with an explanation. It's not an easy thing to explain or understand. I've only personally met a handful of families whose stories directly involve Mitochondrial Disease in one way or another.

Like many other parents, in an effort to learn all that I could about the disease that began to invade our lives I sat down at my computer and started searching for information that would tell me more. Through my hours of research I came upon a website that's run by parents to support other parents that have children with various special needs, some minor and others complex and more severe, a very diverse group. Within the website there was a section specifically dedicated to those families effected by Metabolic and Mitochondrial diseases. I read for months before constructing my first post and briefly introducing myself and my son...5 years ago. I still connect with many of the parents that I've met through the years. It's a community made up of mostly Mothers who have been brought together looking for others who know and have been or are currently travelling a similar journey with their child/ren. It's a very special group of parents and children. These Internet "friends" understand what most others do not...we can relate to one another. I've come to care for many of the families and their children. So, when another family is struggling and in a position that they must make unfathomably hard decisions relating to their child's care it really hits home.

This week two children, who also have Mitochondrial disease, are growing weary in their fight. Zach Moody and Eithene Hilliard have both been placed in hospice care and are making cherished memories with their families. I've found myself thinking of these children and their families a lot, praying that they feel the love that surrounds them and a peace that surpasses all understanding. My heart hurts for these parents that will watch their child's earthly body take it's last breath. These young children will soon be free of their broken bodies and healed at last. I'm asking you to keep these families in your prayers as they begin travelling a new, very different journey with their children.
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  1. My heart is heavy for these two families. I came across your blog through Eithene"s blog. I had never heard of Mito before I found her blog. Mito children,their parents, and the doctors are now on my prayer list everyday.

  2. Even not personally knowing the other mito families, I still feel somehow linked to each family. I hurt so much for them. As I read about Wyatt's most recent time in the hospital, I felt as if I was there with you. I know that fear and absolute pain of watching your child suffer.. of not wanting one more test and wanting to will the Drs to know every detail about my son so they can treat him best in the heat of the moment..make him better. It is so painful and frustrating. I have to believe their struggles and yours are not in vain. Praying for those families, yours and all the innocent children - amanda

  3. I'm praying for strength, comfort, and peace for both of these families. My heart goes out to them.