Happy ❤️ HEART Month
Did you know February is heart month? Or more specifically that February 7 — 14th is Congenital Heart Defect (CHD) week? I didn’t until my friend Jenna shared about it. She holds a special place in my heart for a very specific reason. Let me tell you the story.
Five years ago I was pregnant with our youngest little one. That’s hard for me to believe, FIVE YEARS!!! At the time Colby had just gotten a new job working full-time remotely from home. We were over the moon about it and thrilled to be welcoming baby #3. I knew it was time to close up shop on my little basement preschool I’d been running and I’d already scaled WAY back on the cookie and cake decorating orders I accepted (now @Emily-joy-bell). Life was good! But we had an itch. We had carefree hearts and the world was calling us to adventure.
About the halfway point in my pregnancy my friend Jenna, who was also pregnant with baby #3, and due just days apart from me, shared that their unborn son would be born with just half a heart! My heart ached for them!
In the coming months, I watched intently as their sweet little boy was born and underwent multiple heart surgeries within his first several months of life. I couldn’t even fathom what their family was going through. At one point in their journey, I distinctly remember Jenna sharing a post about faith and fear. It was something like this:
When I saw her post I think we had decided already as a family to sell EVERYTHING and leave the home, neighborhood, family, friends, and community we loved dearly for a simple carefree full-time travel adventure. When we told people we were met with all sorts of hypothetical ‘what if’ questions.
Those questions tugged at the fear and questions and uncertainties in my own heart and helped me come to a place of greater, albeit uncomfortable, surrender.
When I saw Jenna’s post that laid faith and fear out so simply and explicitly I felt deeply inspired. I determined that if she could choose faith in spite of the very real, scary, hard they were facing, (that I knew I only saw a tiny glimpse of) I could take a blind step into the unknown with my family.
Fast forward to now. We’ve come a long way, traveled many places, and my favorite of all, met, forged friendships, and healed relationships with SO many people we love deeply. We never could have imagined the hard we would face these last five years and how our faith would be stretched and strengthened and refined. Certainly, I wouldn’t have guessed stage 4 cancer, living in a renovated school bus, and having a broken back, sternum and broken hip would be something I’d experience in my mid-30s. But, that’s been part of our story and from the beginning that was one thing Colby and I both felt called to — to share our story. We wondered what exactly our story was. We felt completely ordinary.
So, earlier this week when I saw Jenna’s post spreading awareness about CHD and addressing the very real reality that currently there is no cure — she says:
We are asked all the time by well-intentioned friends and strangers alike, “so is {your little boy} ‘good’ now?”. Those who ask CARE, and because they care so much, I believe that they want his surgeries to be successful in a way that fixes him, they want the hard things he has endured to be behind him, they want to hear that he is “all better”.
I usually [for the comfort of the questioner] reply with some optimistic variation of “he is doing great right now, but he will always have half a heart, we take things a day at a time…”.
But the difficult truth is that the best medical care, medicine, surgery, or transplant will not save him from this disease. There is no cure for CHD.
I again felt called to a cause. This time, to join her in spreading awareness about their sweet 4-year-old son’s disease. I believe in possibilities, and just like I never imagined what our family would be called to, I know each individual life has meaning and purpose and I believe in a limitless God who can work miracles. Maybe it sounds crazy to conceive and too optimistic for some, but maybe, just maybe, someone’s purpose is to discover a “cure” to an “incurable” disease. It’s been known to happen before. When it comes to possibility, I choose to believe.
To those living with this disease, or a loved one who has it, we send you our unfailing love and support. We know we can’t possibly comprehend your journey.
And one last thing, and I hope with all my heart, it doesn’t come across as insensitive, but as someone who has also been told by medical professionals that I too live with an incurable disease, EVEN IF there is never a cure, I know there IS peace and hope in eternal life through Jesus Christ.
