Sometimes I surprise myself
I am part of a list group of support for Shwachman Diamond Syndrome and Mitochondrial Disease. I am able to connect will all sorts of families in various places on this rough and tumble road of life. A couple of days ago, a Father introduced himself, his wife and 7 1/2 month old daughter. Their daughter was just diagnosed with Shwachman Diamond. They are in the horrible state of confusion, sadness, worry and most of all overwhelm. I responded to his long email of questions and my response was equally long. I found that as I kept typing, the fog from my mind seemed to burn off and I could remember clearly that fact that Shwachman's has not beaten me down for good.
The last few months have been unbearable with suffocating worry over everything going wrong with all three of the kids. To say I am tired and beaten would most assuredly be an understatement. When I finished typing out my response to this family, I closed the computer and didn't read what I had written.
Today, I read my post again and surprised myself. I really sound like I have it all together; an old veteran at the Shwachman thing. Here's an excerpt from that post:
" Don't let SDS redefine your life, your marriage or your daughter. It's so easy to 'become' the disease but don't let it rob you of everything. I hate SDS but there is one thing that I can thank SDS for- we cherish every moment, every milestone. Life is richer than I think it would be otherwise. We don't take anything for granted. My kids love each other deeper, I love them deeper, they are my greatest joy! When we laugh, we laugh hard and we laugh together. When we cry, we cry hard and cry together. Somewhere in all the tears, the strength of a parent is born. Your shoulders become broader to carry this burden and your heart bigger, not just for your family but all those who suffer, so love the tears and sorrow as much as the joy. "
It's true. Everything I said is true but I didn't really remember until I re-read my thoughts. I do hate Shwachman Diamond. I hate everything that it has taken from me and will eventually steal away but there are many blessings that have come from the ashes and sorrow. We are closer than I imagine a family can ever become. The smallest, insignificant thing is a thing to celebrate. Everything in life is in High Def; even the sadness. The sad moments seem to hurt more and run deep but so do the joys. Every little, happy moment is one to embrace. I don't like having to take the good and the bad, I just want it all good but that is a dream for another life, not mine.
There are treasures to be found in being a mother to children with chronic, life altering diseases but at times, you must do a little digging in order to discover the little gems.
The last few months have been unbearable with suffocating worry over everything going wrong with all three of the kids. To say I am tired and beaten would most assuredly be an understatement. When I finished typing out my response to this family, I closed the computer and didn't read what I had written.
Today, I read my post again and surprised myself. I really sound like I have it all together; an old veteran at the Shwachman thing. Here's an excerpt from that post:
" Don't let SDS redefine your life, your marriage or your daughter. It's so easy to 'become' the disease but don't let it rob you of everything. I hate SDS but there is one thing that I can thank SDS for- we cherish every moment, every milestone. Life is richer than I think it would be otherwise. We don't take anything for granted. My kids love each other deeper, I love them deeper, they are my greatest joy! When we laugh, we laugh hard and we laugh together. When we cry, we cry hard and cry together. Somewhere in all the tears, the strength of a parent is born. Your shoulders become broader to carry this burden and your heart bigger, not just for your family but all those who suffer, so love the tears and sorrow as much as the joy. "
It's true. Everything I said is true but I didn't really remember until I re-read my thoughts. I do hate Shwachman Diamond. I hate everything that it has taken from me and will eventually steal away but there are many blessings that have come from the ashes and sorrow. We are closer than I imagine a family can ever become. The smallest, insignificant thing is a thing to celebrate. Everything in life is in High Def; even the sadness. The sad moments seem to hurt more and run deep but so do the joys. Every little, happy moment is one to embrace. I don't like having to take the good and the bad, I just want it all good but that is a dream for another life, not mine.
There are treasures to be found in being a mother to children with chronic, life altering diseases but at times, you must do a little digging in order to discover the little gems.
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