tonight is not the night
I posted this on my personal blog, but it also seemed appropriate here. Forgive the double posting.
The unfinished entry for this journal that I currently have sitting on my desktop will be unfinished for a while. It's not a bad entry as entries go, perhaps a tad heavy on the sarcasm. But today another little one lost her battle with the dreadful liver disease that haunted Annika's first year of life. A transplant came for this little girl, but she was just too sick to make it through the grueling surgery.
Continue reading...
I didn't know this little girl at all, but followed her progress through her mom's updates on her website, and through our on-line support group. I didn't know her at all, but I knew that feeling her parents had every time they posted that she was getting sicker. I didn't know her at all, but it was plain to see that her parents loved her with all their might and I knew that feeling, too. I didn't know her at all, and now I will never have the chance to.
And her parents have gone to a place I know nothing of, either. That place you live when someone you have loved and cared for and fought for so hard is no longer there for you to hold and hug and whisper to in the dark night.
So tonight I cannot write about that stuff I was going to write about. That stuff not even worth mentioning right now. All my little complaints are just signs that life is continuing on here, in all its sometimes maddening glory. And I hate that her parents will never have a chance to complain about how hard it is to get a toddler to do _________ (fill in the blank, the possibilities are endless).
A few hours after reading the sad news, I was rocking Frankie to sleep and perusing my usual blog reading. On the incredibly popular and highly addictive dooce.com, the entry today found Heather bemoaning her daughter's blood draw, not a regular part of her daughter's life. And there was that part of me shaking my head and saying, "Geez, a lousy blood draw. Is that really so terrible?" And then two seconds later I was kicking myself, and picturing Heather, dooce's author, flipping me off for my judgmental thoughts, as I'm sure she would very well do had she been privvy to them. If we aren't doing our damnedest to help our children avoid suffering, and hating it with every fiber of our being when we can't keep them from pain, no matter how large or small, well then we just aren't doing our jobs as parents. That's what we do.
But still. Today a little one who had to struggle so hard for every single day lost her struggle, and the enormity of that fact dwarfs anything else I might have to say today. Maybe tomorrow, maybe the next day... But tonight is not the night.
The unfinished entry for this journal that I currently have sitting on my desktop will be unfinished for a while. It's not a bad entry as entries go, perhaps a tad heavy on the sarcasm. But today another little one lost her battle with the dreadful liver disease that haunted Annika's first year of life. A transplant came for this little girl, but she was just too sick to make it through the grueling surgery.
Continue reading...
I didn't know this little girl at all, but followed her progress through her mom's updates on her website, and through our on-line support group. I didn't know her at all, but I knew that feeling her parents had every time they posted that she was getting sicker. I didn't know her at all, but it was plain to see that her parents loved her with all their might and I knew that feeling, too. I didn't know her at all, and now I will never have the chance to.
And her parents have gone to a place I know nothing of, either. That place you live when someone you have loved and cared for and fought for so hard is no longer there for you to hold and hug and whisper to in the dark night.
So tonight I cannot write about that stuff I was going to write about. That stuff not even worth mentioning right now. All my little complaints are just signs that life is continuing on here, in all its sometimes maddening glory. And I hate that her parents will never have a chance to complain about how hard it is to get a toddler to do _________ (fill in the blank, the possibilities are endless).
A few hours after reading the sad news, I was rocking Frankie to sleep and perusing my usual blog reading. On the incredibly popular and highly addictive dooce.com, the entry today found Heather bemoaning her daughter's blood draw, not a regular part of her daughter's life. And there was that part of me shaking my head and saying, "Geez, a lousy blood draw. Is that really so terrible?" And then two seconds later I was kicking myself, and picturing Heather, dooce's author, flipping me off for my judgmental thoughts, as I'm sure she would very well do had she been privvy to them. If we aren't doing our damnedest to help our children avoid suffering, and hating it with every fiber of our being when we can't keep them from pain, no matter how large or small, well then we just aren't doing our jobs as parents. That's what we do.
But still. Today a little one who had to struggle so hard for every single day lost her struggle, and the enormity of that fact dwarfs anything else I might have to say today. Maybe tomorrow, maybe the next day... But tonight is not the night.
posted by Moreena at 8:12 AM
6 Comments:
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Moreena, that was beautiful and exactly how I felt about this situation.
I am still amazed how I hold all of the CLASS children dear, and how much I love each of you.
I grieved harder for this family than I thought I would, but am glad I was able to.
Moreena -
Thank you for putting into words my feelings. Friday was a tough day for most of us CLASS moms. It's never easy when we lose one of our own. Partly because it is a child that we have grown to care about and love - and partially because it reminds all of us how horrible this disease, that we live with every day, can really be.
Thanks for sharing with all of us.
I don't know of the child you all are speaking of since my Noah's problems are of a different kind than most of the bloggers here, but all the same, my heart goes out to her parents and to all of you who are shaken and reminded how fragile life is - my heart goes out to you too.
Coley (Nicole--I feel a bit funny using your nickname, but then I'm afraid that if I don't noone will know who I'm responding to),
I'm so glad that you are posting here. I know it must be hard sometimes when so many of us have shared experiences (kids with liver problems). But I did intend for this blog to have a broad pool of contributors, and I have been working this past weekend on reaching out to other places where I might find people interested in contributing outside of the liver world. That's one thing that is amazing about the "Welcome to Holland" essay--it is really meaningful to parents with kids who have so many different issues.
Thank you for your kind words...
Morenna, please call me Coley - everyone does! Only my parents call me Nicole anymore!! :)
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