So I just wanted to take a moment and let everyone know how appreciative I am for the the wonderful family and life that I have. It's amazing how much I take for granted the things that I have and the things that I am able to do. The reason I bring this up is this past weekend we attended a funeral for one of Ragen's cousin's Rachel. She was only 10. Ragen's Aunt and Uncle are carriers of a very rare disorder called Monochromatic Leukodystrophy. The chances of two people meeting and both being carriers of this is very rare. They have had 6 children (3 were triplets) all together in which all but 1 have been diagnosed with this disease and 3 have already died.
Monochromatic Leukodystrophy is a very rare disorder that affects the myelin structure around the nerves which in turn affects the balance and muscles. These children for the most part were crawling and standing somewhat before it really affected them. They are all in wheelchairs and are in somewhat of a vegetative state. They are able to express thoughts in their own little ways but are unable to speak, walk, move eat on their own, etc. They have already lived past what they were expected.
So as I was sitting there watching this family greet people at the viewing, I couldn't help but start to cry. First of all because it was family and I hate having to deal with death, second of all because she was only a child and no child should have to die, and third of all because I sat and watched there only son who was not diagnosed with the disorder try and hold back his emotions but eventually was not able to. My heart went out to him as well as the rest of their family, for what they have had to deal with for so many years and how much they have endured. Then I watched the two children in wheelchairs and you could see it in their faces how sad and vulnerable they were, bnut were unable to tell anyone or cry even. I couldn't hold back my emotions.
It made me think of how blessed I am and made me realize that I could never do what these parents have done and endured what they've endured. To know that my children will die long before I ever would would be unbearable and heartbreaking. They are such amazing people and I am truly blessed and humbled to know them and be a part of their lives. It makes me grateful to know that we have the Plan of Salvation and to know that they will be with their children again someday. Also to know that Rachel is now with her grandparents and her sister and brother who have already pasted on.
Rachel, we will truly miss you and love you and know that you are in a better place now where you are free from everything and are able to run around and probably talking up a storm.
Thank you for this post. My family and ward were able to help the family when they lived in SLC when the triplets had their bone marrow transplants. We went to Hannah's and Ryan's funerals. We were wondering how Sam and Rebecca and Jack were doing. Sad story. Thank you.
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