Inspiration is all around us—it’s not hard to find if you’re open to looking for it. While Crohn’s disease and chronic illness can be incredibly isolating and debilitating, sometimes the best medicine is to open our eyes to the world around us and recognize that many people (more like the majority) are fighting their own battles—whether visible or not.
This past week was a monumental milestone for my close friends, Joe and Julia. Their baby girl, Jade, finally left the hospital after 229 emotional days and headed to a rehabilitation bridge hospital to seek further treatment. Since Jade entered the world February 25, 2016 she’s shown not only myself, but family, friends, and strangers around the world, what it means to beat the odds and be strong.
Doctors diagnosed Jade with an incredibly rare congenital heart defect known as Pulmonary Atresia with Ventricular Septum Defect, while in utero. The condition is listed under Tetrology of Fallot. Babies born with this oftentimes have a bluish skin color, because their blood doesn’t carry enough oxygen, they have trouble breathing and eating, are extremely sleepy, and their heart requires surgical repair.
When you look at Jade, who tips the scales at only 12.5 pounds, and she’s able to muster up the strength to fight after enduring three open heart surgeries, a g-tube, a trach, countless tests, and prods and pokes…it shows there’s more to life than just your personal pain and struggles. Watching her brave through the unthinkable and overcome each obstacle is proof that miracles do happen. She’s shown us that just because one day is difficult, doesn’t mean there’s not promise in the next.
Seeing our dear friends experience the highs and lows of round-the-clock medical care for their child and how they manage to stay positive, hopeful, and keep their faith close to their hearts has been awe-inspiring to the say the least. Nobody knows what cards they will be dealt when it comes to the health of their child or themselves. Often this can be taken for granted until your daily battles become your new normal and you have no choice but to tread on and discover how to wade through the unknown waters before you.
Jade has spent every moment of her existence under observation in a hospital setting. Unlike healthy babies who head home a couple days after birth and celebrate milestones in their nurseries and at home—she hasn’t had the chance to breathe fresh air and wake up in her beautiful sunshine filled nursery yet. Jade’s life has a unique path, but time and time again she’s shown just how resilient she is.
Even as she works on her rehabilitation—there’s no telling what her future holds. In a few months she will need to undergo a full heart repair. While no person or family should have to endure such hardship, this is their reality. As my Godmother always says, “God gives his toughest lessons to his greatest teachers.”
Jade, Joe, and Julia are a reminder to us all of how precious life is—that you never know what tomorrow brings and that we all have two choices—to think woe is me and wallow in our pain and struggles or face them head on with everything we’ve got.
You can support Jade by donating to her Go Fund Me page:
Sending a card or letter to her and her family:
Prayers for Baby Jade
PO Box 1475
Fenton, MO 63026
Following Jades’ story on Facebook:
Prayers for baby Jade
…and by living each day with a “Jade state of mind.” This bad ass baby girl refuses to give up. She knows she has a lot to fight for and in turn she’s proven that grown adults and kids alike can look up to someone who hasn’t even taken their first steps yet. I love you, Jade—you are the toughest baby girl I know.
2 thoughts on “Living each day with a “Jade state of mind””
I had just walked out of the nursery, here at Ranken Jordan, to put a little food in me and read your article. Tears ran down my face and it took my breath away Natalie. You articulated her journey along with Joe and Julia’s so beautifully. Thank you.
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Aww that means so much coming from you–you are a rock and amazing caretaker for all of them!