I just got the book "Hope for Families of Children with Congential Heart Defects." In the opening few pages there is a poem I would like to share with all of you. It is written by a heart mom of a 4 year old boy with Hypoplastic Left Heart Syndrome. She is very eloquent in her writing. I have read quite a few of her poems on her son's CarePages and blog. She puts many feelings into words that I could never even start to attempt. So, again, I will share another poem with you. My hope is that it helps you to understand what Carter and our family have gone through, continue to go through, and what an amazing little man we have on our hands.
What's a CHD?
You passed me in the shopping mall
(You read my faded tee)
You tapped me on the shoulder
Then asked, "What's a CHD?"
I could quote terminology
There's stats that I could give
But I would rather share with you
A mother's perspective
What is it like to have a child with a CHD?
It's Lasix, aspirin, Captopril
It's wondering...Lord, what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks
It's feeding tubes, calories, needed weight gain
It's the drama of eating ~ and yes, it's insane!
It's the first time I held him (I'd waited so long)
It's knowing that I need to help him grow strong
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his stats as the feeding pump's beeping
It's knowing that there is just no time for sleeping
It's caths, x-rays, and boo boos to kiss
It's normalcy that sometimes I miss
It's asking, "Do his nails look blue?"
It's cringing inside at what he's been through.
It's dozens of calls to his pediatrician
(She knows me by name. I'm a mom on a mission)
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser
It's watching him sleeping ~ his breathing is steady
It's surgery day and I'll never be ready.
It's handing him over (I'm still not prepared)
It's knowing that his heart must be repaired
It's waiting for the news on that long stressful day
It's praying, it's hoping that he'll be okay.
It's the wonderful friends with whom I've connected
It's the bond that we share, it was so unexpected
It's that long faded scar down my child's small chest
It's touching it gently and knowing we're blessed
It's watching him chasing a small butterfly
It's the moment I realized I've stopped asking, "Why?"
It's the snowflakes that fall on a cold winter's day
(They remind me of those who aren't with us today)
It's a brave little boy who loved Thomas the Train
Or a special heart bear or a frog in the rain
It's the need to remember we are all in this plight
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow
It's finding the strength to have hope for tomorrow.
And no, we'll never be the same
It's changed our family
This is what we face each day
This is a CHD.
~by Stephanie Husted, Heart Mom
I don't have much more to say. Carter is doing well. We are truly blessed. He is an amazing little man! And just a few recent pictures for you...as always. He also just got a haircut, but these pictures were taken right before the haircut and show his mop...and his funny little personality! :)
Funny little boy always puts on a funny face and sticks out his tongue right when he hears the beep of the camera...it's hard to get pictures when he is not doing this!
As always, thank you for following our little man. We appreciate your continued support and thoughts and prayers. We love to read the comments to know who continues to follow Carter's progress and journey. You all are wonderful!
Love seeing new pictures of Carter! What a doll! Carter is sure an inspiration to so many, as are you! Would love to get together with you guys before you have to go back to school.
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