CHD and the extended family

Tomorrow you’ll hear from my sister.  She wrote about her experience as an “outsider” looking in.

Today, though, I wanted to talk about another kind of family.

The bonds I’ve formed with the women and families online have been ones that have kept me sane, given me hope.  These women have cried with me, rejoiced with me, walked with me…and 99% of them have never met me.

I try to keep my distance and not entrench myself in their lives.  But, it’s hard.  Because with each worried question posted, each plead for prayers for an upcoming appointment, every bit of good news that is shared….it becomes a huge part of your life.

But, keeping a distance is a necessity.  Because, so many of our little ones pass.  It’s what CHD does. It kills the most innocent.

In my time being involved within online groups, especially my Heart Mamas, I have been witness to over 15 deaths.  I have read each  new update of their angel earning wings…every painful post.

They have become a family of sorts.  A beautiful, dysfunctional family where we all share our lives – each of us intertwined and connected by broken hearts.

This family – I have one person to thank for for that.

When I was incredibly lost, scared, hopeless at 24 weeks pregnant with our Evan, I remember Googling “congenital heart defect stories of hope.”  I needed to read about something…someone….anything that would provide comfort for me.

A blog popped up.  I read about an amazing little boy.  Had a look see into the heart of a Heart Mom.  Felt her strength, her fears, her courage.

She gave me hope…not just that Evan would be ok…but that I would, too.

I emailed her…gave her a bit of our back story…letting her know we were expecting a heart baby very soon.  She replied back within a couple of days…and I guess the saying goes, “The rest is His-story.”

God’s perfect timing and connecting me with this beautiful family.

I write about Stefanie today…she has no idea, by the way….because I read her blog yesterday about her boy Logan.

I read that cardiology visit resulted in bad news…and when a visit doesn’t end with…”He looks great!  See you in 6 months!” Rather, ending with “possible catheter…possible open heart surgery (again…)”

I felt my gut wrench for her.  She’s become my family – her Logan – one I pray for daily.  She connected me to the life line I call, “Heart Mamas.” She provided me with links of other blogs that gave me hope.

So today, during CHD awareness month, I want to show you who made me aware, gave me hope, shared her life openly – like I do now with you – the one who reached me and who promised me that no matter what – NO MATTER WHAT – it would be ok.

Dear friend….I pray for your Logan and for your heart and mind today that must be going a million miles a minute.  I pray for the hope to lay prominently in your heart….the same hope you gave me over a year and a half ago.

Read her story, read about her Logan, pray with me…


  1. Perfectly said! Stef has done so much to help unite families who are all walking this same path. I’m so thankful for her friendship and those that she has helped facilitate through her “Every Heart Has a Story” blog event. Saying extra prayers for little Logan!


  2. Oh my goodness Czarina, my dear sweet heart mommy friend! TEARS!!! TEARS!!! TEARS!!! You have truly touched me today. I see so much of myself in your writing especially when I think of those early days in the beginning of our own journey. I’m so glad that I have helped you to find hope in a world that is often not kind to these precious little hearts. There is indeed hope out there and it is everwhere. Even in those moments of great pain and feelings of despair. Thank you for sharing our sweet boy’s story! It means so much! Always thinking of your family and keeping you all wrapped in prayer!