It’s always in the back of my mind

February 11, 2015/Confessions

chd awareness

The days with Ryan go by in a blur now. He’s slower than the average 6 year old boy, rarely bouncing off walls or running in circles, but he’s still made out of snips and snails and puppy dog tails throwing things from the open staircase down to the foyer below or flying Buzz Lightyear through the air making all the appropriate noises.


It’s hard to believe where we started and where we are now – to imagine being the mom to a child who spent the majority of his first year in the hospital, a mom who was a hot, sweaty mess lugging around portable oxygen and a feeding tube for another year, and managing to get through each day parenting three children four and under. One of whose heart beats outside of his chest. (And who am I kidding? I’m still a hot, sweaty mess keeping up with these hobbits!)

I can hardly remember the stress and anxiety that went along with all things Ryan and I’m the one who lived it!


I look back at pictures of a head larger than life due to hydrocephalus, and cheeks and chin chubby with edema, and am reminded of how healthy our little boy has become.


But I know in the back of my mind that life will most likely become crazy again. At least for a little while. Heart catheterizations and open-heart surgery are always a possibility, especially since Ryan hasn’t had the third surgery most patients with his condition require. As another heart-mom on Facebook posted, “We know that our days aren’t guaranteed, that the fight is still going on, even if it’s a silent one.”

In the middle of this CHD awareness week, I’ll enjoy the quiet while it lasts!

P.S. If you haven’t read Showing Heart: The True Story of How One Boy Defied the Odds yet, what are you waiting for?

Comments (6)

  • bridget / February 11, 2015 / Reply

    I still don’t really have the words for those early years, but that huge SMILE – amazing! Love you, my friend!

  • Linda / February 11, 2015 / Reply

    It is amazing how much Ryan is growing and changing! He is such a handsome little boy! (Did his daddy look like him when he was his age? Because I do think Ry looks a lot like his daddy now!)

    It is shocking that 1 in 110 babies are born with heart defects isn’t it? Our little Anna was one of those…and we were like you, always knowing in the back of our mind that she may require another surgery…and the possibility of a heart transplant someday. BUT we didn’t dwell on it at all. We just lived one day at a time, and enjoyed her so much along with the other kiddos.

    I mean as the days, months and years went by we delighted in her and left it all in God’s hands. I know that you do that too. You are doing a good job Leighann. You are one busy momma, and yet you have managed to become a writer, and an author as well a mother of four, and a wifey too. 🙂
    You have a sense of humor, and I like that! You make me laugh when I read your blog, as I keep up with all that’s going on in your life. Laughter is such a good thing…and I hope God will fill your life with laughter and joy as you live with your four Hobbits and your Giant! I love how you are reaching out to others by writing your books…and offering help to families who find themselves on the same kind of journey. Keep up the good work!

    Love, Linda H.

  • Becky / February 11, 2015 / Reply

    he’s ALWAYS smiling……… And if anyone has not read your book about Ryan – they are missing out! I am so thankful that God has blessed you with your Giant and your four hobbits & I think Henry and your kids know how special you are

  • Debbie / February 11, 2015 / Reply

    I love the pictures that show exactly how far Ryan has come and how much God has done and continues to do in his life. Yes, it’s never far from the back of our minds – different diagnosis, but we know that there is a “someday.” God is great, and we will continue to live life as fully as we can, though.

    Blessings to you!!!

  • Lindy / February 12, 2015 / Reply

    Happy Birthday, Ryan! I love that, despite not actually knowing your family, I have this overwhelming desire to buy your kid a cupcake, and celebrate along with you! 🙂 His sweet smile makes me smile, and I’m so glad that You’ve gotten to enjoy it for these six years.

  • Liz @ Downtown Demure / February 17, 2015 / Reply

    What a tear-jerking post, Leighann! Your little guy is beautiful and clearly a fighter. So happy to connect with you via the Peony Project. I’m glad you’re taking a moment to appreciate the quiet days you and your family are blessed with. 🙂

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