Liam is still doing great this afternoon...what an amazing and brave little man we have! He is now eating from a bottle very well so far, so they took him off his IV "food". Hopefully if he stays eating well, he will not have to experience a feeding tube.
It was sad today because he got a vaccine shot for RSV and they also were trying to find another IV entry point on his little body (he has probably had a total of 5 or 6 IV's all in different spots so far), so he was being poked and prodded for a little while this afternoon. He was soo good, but did cry at one point while they were trying to put an IV in his little foot...That was hard for me to hear. But I kept telling myself, babies cry - that's just what they do. I guess I have never heard him cry for a normal baby reason, so my heart is tender for him when he does....They never did get a good line for him, so they said they would have to try again later...Poor little guy.
I thought I would share a poem I found while I was looking at some websites related to Congenital Heart Defects. I think it explains very well how one feels in our situation...
"When Time Stands Still"
by Debbie Hilton-Kamm
It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still
In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play?
Will I see his wedding day?
All the planning, the hopes and dreams
Are put on hold -- just what does this mean?
His crib is empty, his toys alone
For now, the hospital will be his home
This is a place where time stands still
Where the void's too large to ever fill
For in a hospital's intensive care
Children lie, some unconscious, some aware
And time is measured by a new yardstick
Every second marked by a monitor's tick
Noting every breath the child takes
And every beat his tired heart makes
Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can't oblige
Seems like far more than an entire lifetime
And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that's what they say
Because in each moment they've lived a thousand days
For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass
found on http://www.congenitalheartdefects.com/
I can honestly say it does get very depressing at times, more often than I would like. But this poem resonated with me the truth about the raw emotion that comes with this type of event. Every time I start to feel angry, upset, depressed, God (and also my wonderful husband) tells me it's ok to feel that way...for He created our feelings and He is more than willing to help us cope with them and act on our behalf as we ask for strength and courage.
I pray that no mother has to experience this...and for those of you that have, I pray that God honor you in a special way, whether it be to give you an awesome birth experience with future children or to allow your children to grow strong and healthy and be a living testament to what the Lord can do.
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