Home…again!

We are still a few months away from the big “O.”

Open heart surgery.

I can’t believe that with all we have been through during this second hospitalization – heavy oxygen support, a heart catheter, Evan’s first heart surgery, and an emergency heart catheter…along with the x-rays, the lines of I.V.s, the tests…the tears, the fear, the roller coaster ride…

…that we’re not even close to being “done” with surgeries.

It pains my heart as I look at my boy and realize he’ll never be “fixed.”  God willing, his heart will be repaired and will give him many years to live a full life.  God willing – Evan will only need one more BIG surgery versus multiple surgeries to help mend his heart.

It pains my heart even more that he has surgeries for his cleft lip and palate repair.  And those repairs will start after his heart is mended…and extend throughout his teen years.

I can’t believe my boy has to go through so much.

I can’t believe that no matter how much he’s already been through, he still finds it in him it smile.

He’s joyful.

He’s taught me about faith, about courage, about love.

Through this journey, Craig has been my constant support.  He’s only needed to lean on me once….and all the other days…I’ve leaned on him.

The doctors at Children’s Medical Center have been amazing.  Truly.  Intelligent.  Empathetic. Caring.

Dr. Nugent, Dr. Ramiciotti, Dr. Wolovitz, Dr. Lemler….just to name a few.

And Dr. Forbess…the cardiothoracic surgeon who placed his hands in Evan’s chest, saw his beating heart and gave my Evan more months with us.  He’ll be the one to search his mind for a plan, guide his hands as he cuts open Evan’s heart, and stitches together my son’s heart that isn’t quite right.  Many more months down the line…I will ask Dr. Forbess to perform a miracle on my son.

The amazing nurse practitioners in the CVICU –  Kim and the other Kim :-) , Molly…and especially Kasey and Kristi – the women who held my hand, comforted me, cared for my boy like he was their own…brilliant minds, caring hearts, supportive hugs and encouraging words.

The expert nurses in the ICU…..how do I even begin to thank Katie, Courtney, Leigh, the other Katie :-),  Jessica…just to name a few

And my extended family – the nurses on the 8th floor..How do I thank MaryAnne for watching my boy when he was struggling before his surgery and then give this tired a Mama a break when we came back up to the 8th?  How do I thank Karen, Dee Dee, Frances, Stephanie, Allison, Jerry, Felicia, Angela, Lauren, Brittany, Valerie, Amy…just to name a few.

My gratitude doesn’t seem like enough.

The team at Children’s has not just taken great care of my Evan – they took care of me.  They took care of my family.  They loved – love – my son.  I know they do.  They are helping Craig and I extend our legacy.

So, through it all, the tears, the fear, the ups, the darkest hours, the smiles full of joy – we survived it.  Evan survived.  He battled…and he’ll do it again.

But today, we go home.  We go home once again.  We live our life as a family of four.  We’ll take walks.  We’ll battle with tantrums.  We’ll sing songs.  We’re going to live our lives to the fullest.

Because Evan isn’t fighting this hard for me to give him anything less.

Until next time…

Keep fighting, son.