This article is in honor of Congenital Heart Defects Awareness Week. Please do not feel sorry for me as you read this story….my hope is that you gain perspective that enriches your daily life.
To the Parents of Healthy Children,
My daughter was born with a heart condition, a serious one at that. She had to undergo a 13 hour open-heart surgery when she was just 8 days old. Imagine how it felt to plan for this while pregnant. Imagine how it felt to decorate her nursery. Imagine how it felt to attend my own baby shower. Imagine how it felt to baby-proof my home. Imagine how it felt to install her car-seat. Imagine how it felt to start the delivery process. And imagine how it felt to hand her over to the surgeons.
You can’t possibly imagine how any of that felt – unless you have been in my shoes. All of the pain and fear of being a CHD (Congenital Heart Defect) Mom is truly beyond measure. I struggle writing you these words as the tears are incessantly streaming down my face and I can barely see my computer screen. But, with all of the pain there also comes immeasurable joy, love, beauty and genuine daily pleasure that I have to find a way to share, because I believe that this is life’s biggest gift and I received it early. We as humans seem to have an innate ability to forget about how fortunate we are until our circumstances change for the worse. From our childhood on, we feel like we are invincible. We feel like we have rights that are given and not earned. And some of us even feel entitled to a certain standard of life.
All of these “givens” are stripped away when you hear the words “something is wrong with your baby’s heart.” May you never hear those words, but if you do, be confident that there is beauty on the other side. For those of you parents who have been given the path of a normal pregnancy and a healthy baby, may you please read these following words and take them to heart – Every Day Is A Gift.
I was at a park this past summer with my daughter. We were on a swing set that allowed for two children to swing side by side. It was such a simple moment, but one that I will never forget. As I was pushing my daughter her laughter was practically echoing through the leaves on the trees, her curly hair was glistening in the sun and she kept on shouting “Yippee! Mommy, go higher! This is so much fun!” I too was enjoying the moment to its fullest. My smile was so big that it probably looked unnatural to onlookers and I was laughing along with her and hoping that the moment would not end. It was the kind of simple moment, the kind of simple “right” that I so longed for when my little girl’s future was uncertain. Next to me was another mother with her son. Their ages were similar to ours and in theory they were doing the same thing as we were. But the difference between our experiences that day gave me so much perspective. The young boy on the swing was having fun but was rather unenthusiastic. His mom said the words “yes, this is fun honey but we need to go soon” all while pushing him with one hand. Honestly, I don’t mean to pass judgment because only we know of our own troubles, but I couldn’t help but feel sorry for them both. I walked away thinking that this mother had never felt what it would be like to lose her child and I am thankful she has not endured that pain. But, what if she lived her life in a way where each moment was treated like a gift? Or each moment was something earned? Why do we as humans have to face near tragedy first hand to live this way?
I walked away with the realization that if my story were more like hers — more “normal” — I would probably act and feel exactly the same way as she did. Instead I have been blessed with a true gift — understanding how to live in the moment. I remember going back to the very early days of my little miracle girl’s life and already enjoying this different perspective, this gift….when my daughter was out of her surgery she was on a breathing tube for days on end, it felt like forever. So finally when she could not only breathe on her own but scream to get my attention, I gladly responded. During the entire first year of her life when she would scream in the middle of the night, I wouldn’t hear crying, I would hear strength and healing.
What does it mean to be a CHD Mom? It’s hard; it’s really hard. But if you are lucky enough to be the Mom of a CHD survivor then there is also cause for constant celebration. I’ll leave you with how I personally view the meaning of CHD: Congenital Heart Defects Celebrate Her Determination Celebrate Her Delight Celebrate Her Development Celebrate Her Discovery Celebrate Her Desires Celebrate Her Daily Celebrate Her Destiny CHD awareness week is Feb. 7 -14, 2018.
Please share this message to help bring awareness to kids born with Congenital Heart Defects. Our community needs to come together to support these deserving children and the medical professionals that have dedicated their lives to helping them survive.
With Grateful Hearts,
Mommy & Daughter, Co-Founders of My Heart Wall