I've made quite a few friends through the various outlets I've found for parents of CHD kids, one of which posts frequent updates of her daughter, who suffers the same defect (and more) that Sadie has. While she is in a much more serious situation with her child than I am with Sadie, I felt that her post read a portion of my heart, a part that I'm unable to verbalize as eloquently (if at all). I'm posting a portion here:
I can’t describe what it’s like to be a part of this new world. Things that I never once thought about, are a part of my daily life now. As parents – no matter how old your children are – you never want to think about losing them. Unfortunately, when given the very special honor of raising a medically fragile child – those thoughts never go away. They are literally in my mind all the time – lurking in the background on a good day, and more obvious on the bad days. We have certainly had more close calls than I care to remember!
So many parents and children I have read about and couldn’t help but cry – even though I have never met them and never will. Even though I have not lost a child – my imagination of those feelings are very real. Especially when these parents have worked SO hard to do everything to keep their children alive and healthy. It just seems so unfair!
But one thing I’ve started to notice more and more – is that the ones that have been honored to raise these special children feel so lucky, so blessed. How can that be? We deserve to feel cheated and bitter and angry! Well, okay, we do feel those feelings. But, more than that, we feel blessed and grateful. I find that so amazing. Those that have never spent one night in the hospital with a child recovering from life-saving surgery should feel like that. Those that have never had to learn about a rare medical condition, surgery, birth defect, how to be a nurse for their child, etc. should feel like the luckiest people on earth.
I am incredibly thankful. (Even though I am very bummed that the Packers lost tonight.) Every single day
Saturday, January 26, 2008
So Lucky
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Hey Kim, I pray for Sadie often and I also pray for you. I went to a funeral for a four-year-old last week. I expected it to be a very sad occasion (and to an extent, it way), but it was also extremely uplifting.
ReplyDeleteJohn Luke Walker had cerebral palsey and wasn't expected to live as long as he did. Everyone who spoke at his funeral said how lucky they were to know him. I felt like less of a person because I did not know him. I went in support of the family whom I'd grown up with at camp.
One of his nurses read the following poem. I've changed it from a boy to a girl.
Heaven’s Very Special Child
A meeting was held quite far from earth
It's time again for another birth
Said the angel to the Lord above
This special child will need much love
Her progress may be very slow
Accomplishments she may not show
And she'll require extra care
from the folks she meets down there
She may not run or laugh or play
Her thoughts may seem quite far away
In many ways she won't adapt
And she'll be known as handicapped
So let's be careful where she's sent
We want her life to be content
Please Lord, find the parents who
Will do a special job for you
They may not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privileges given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is "HEAVEN'S VERY SPECIAL CHILD"
- Author Unknown