Claira's heart story in the words of her sister Kaylee...
“My little sister Claira’s heart is not the only little heart that needed to be mended. Our family, which includes: Mom, Dad, T.J., Kaylee, Chelsea, Maddy, and Evie, desperately needed an “Ordinary Miracle” to save our relationship. When she was born I looked into her wide, curious eyes and realized that our lives were never going to be the same again. Soon after she was born, she began losing weight rapidly. One night Dad took us into the living room and told us the problem that would change our lives forever; Claira, my dear, dear little sister, had two holes in her precious, little heart.”
A Mother's Prayer I pray you'll be my eyes And watch her where she goes And help her to be wise Help me to let go Every mother's prayer Every child knows Lead her to a place Guide her with your grace To a place where she'll be safe I pray she finds your light And holds it in her heart As darkness falls each night Remind her where you are Every mother's prayer Every child knows Need to find a place Guide her with your grace Give her faith so she'll be safe Lead her to a place Guide her with your grace To a place where she'll be safe
Poem from a "Heart Mom"
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 sats...as the feeding pump's beeping... It's knowing that there... is just no time for sleeping... It's caths,x-ays and boo boos to kiss... It's normalcy...I sometimes miss... It's asking...do his nails look blue? It's cringing inside... at what he's been through. It's dozens of call 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're 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.