Below is a poem that we were handed when we arrived by a group of mothers who have kids born with various Congenital Heart Defects....The group is called Helping Hands Healing Hearts and they are a support group for RI and MA families. A link to their website is http://www.riheartgroup.com/. We thought this poem summed everything up extremely well and we thought the parents following the blog with heart children would enjoy it.
You passed me in the shopping mall…
(You read my faded tee)
You tapped me on my shoulder…
Then asked…”What’s a CHD?”
I could quote terminology…
There is stats that I could give…
But I would rather share with you…
A mother’s perspective.
What it is 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 a while…
It’s seeing my reward…in every smile.
Its checking his sats…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…I sometimes miss…
Its 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 winters 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 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 is 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
9 comments:
I'm SO GLAD the surgery went well and that Colin is on the mend! Hopefully they can get his chest closed up soon. I hope you are getting rest when you can and that you're finding some peace.
Thanks for sharing the pics and the poem. Sending many prayers your way!
xoxox
Wow ...
looking at those pics... reading that poem...
all those memories come flooding back.
I don't think you can ever be prepared seeing a baby's chest open. Yeah.. that took me off guard just a little.
But, it is the best thing for the little guy...
You are all in my prayers.
I know this is a very stressful and emotional time.
Sending you hugs.
God bless.
I am glad I was able to make it up there and help you guys through even just a small part of your journey. Colin is a fighter just like his mom and dad. It was a tremendous feeling being able to share tears as he was being taken away but an even better feeling when I was able to kiss him afterwards in ICU knowing he fought another fight like we knew he would. Here is to a speedy recovery and we will be back up to see you soon. Oh and by the way Tim and Mel, do you think you can slip my car repair bill onto Colin's tab? Come on $1500 will never be picked up by your medical insurance!! Love you guys and see you soon.
Mel & Tim,
I so wish I could be sitting with all of you over there. Get some PF Changs to sooth yourselves!!! We are praying for you and I check my email hourly for updates!!! I'll be over at my friend Nancy's house tonight if you need me to check on anything at your house. We'll drive by if nothing else. I think it's so great you've found families online that have children with the same problem. Technology can be so wonderful for bringing people together. I love, love, love you guys. Gina
Ahh! PF Changs, that always helps!
*giggling*
There was a PF Changs next to Stanford, and nothing like food to help w/ stress.
We also became addicted to Cheesecake Factory as well.
We have you all in our prayers at the Cindy M house. Keep believing in your rainbow...it is coming! Wishing Colin a speedy recover. We love you!
Cindy M House
Oh my...what a picture!
I'm glad to hear that he's recovering well...nothing a little ice, versed, and morphine can't fix!
You have a few days to rest up before they wake your little man up...get the toys ready!
We take SO many toys to the hospital when Isaac goes. We even hang toys from above the bed (like a clothes line full of toys)...the nurses think that we're totally insane..we just tell them that we're totally in love with our little man...and he loves his toys!
You know...on our last visit...they even put headphones on Isaac..playing baby einstein (or something calmning like that)...you should ask about it. They said is helps with all the beeps that he hears! So..of course we bought him little monkey headphones for his next visit. (let me know..and we'll send you out a pair!)
We are all hugging you and you have hundreds...probably thousands of people praying for you guys and for Collin.
The Rollers
Tim and Meline - We are happy to hear the surgery went well. We are keeping you all in our thoughts and sending our prayers that you all can go home soon.
Liz, Andy, Haley & Gavin
Those pictures bring back so so many memorys. You lil man is so brave and I wish you all the best Xx
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