Today I’m sharing the story of a newly found IG friend, Sarah. She is the owner of @shopjumpingjack, home of the “you are my favorite reason to never give up” tee. I fell absolutely in LOVE with Jumping Jack when I came across a pic of this signature shirt on my feed, because even though losing Cruz can sometimes put me on the brink of giving up all-together, he’s also the very thing that keeps going –– I HAD TO HAVE this shirt! Sarah lost her sweet Jack to SMA (the #1 genetic killer of infants and young children) when he was just over 6 months old, yet she managed to launch her own business-with-a-cause right in the midst of it. 1 in 40 people unknowingly carry the gene responsible for SMA, however there’s currently no treatment and no cure. SMA hinders the ability to walk, stand, eat, swallow and breathe… meanwhile parents can do nothing to stop it but be there to comfort them until the deterioration takes its final toll. I know how much I would appreciate someone sharing Cruz’s story and raising awareness about OTC deficiency, so I do NOT hesitate at the chance to do the same for someone else. Here is Sarah’s story:
I have always loved crafting; creativity is a part of me. When my husband and I found out we were pregnant with our first, we were beyond overjoyed. I immediately began creating his custom nursery full of handmade items. We dreamed of the beautiful future with our baby boy. The day I held him in my arms for the first time, was the best day of my life. We named him Jack.
After his birth, we started to notice Jack could not move his muscles like he should. He never held his head up, or moved his legs. After a week stay in the hospital, Jack was diagnosed with the #1 genetic killer of children under 2, Spinal Muscular Atrophy or SMA. We were told he had the most severe type and had just 6 months to live. Six months. Our world fell apart. We were going to lose the person we loved most.
Jack required multiple machines to stay comfortable, he needed to be fed through a feeding tube, and was on oxygen. Since he was unable to lift or use most toys made for babies his age, I decided to make him a small tag blanket that had crinkle material inside for him to explore. He loved it! From that moment, I continued to create more tag blankets and crinkle toys. I opened my Etsy shop a month after Jack’s diagnosis, and named it Jumping Jack in his honor. Crafting was very therapeutic to me during the horrible rollercoaster we were on. Jack took his last breath in my arms when he was just 6 ½ months old. We made unforgettable memories each day. We are so lucky to have had this beautiful boy a part of our lives, but would have given anything to watch him grow up. He is truly the strongest person I know.
Today, Jumping Jack has evolved into much more. We were blessed with a healthy baby girl and she has brought so much joy into our lives. She also inspired new products in the shop – headbands, bows and apparel! I love that Jumping Jack will always be a part of him and I. I love that each item I make brings joy to other little ones. I love that Jack’s story can inspire others to live each day to the very fullest. Jack is my #favoritereasontonevergiveup.
WOW. Isn’t she so inspiring!? I feel the weight of her story so heavily, and my eyes well up with tears as I look into Jack’s big, round eyes and think about the fact that he’s now gone. I find Sarah to be quite the amazing mama, and such a beautiful example of someone who is turning grief into greatness (which is a whole other blog post I am publishing soon)! It’s hard enough just to get out of bed sometimes and face the day knowing a huge part of you is missing, yet she runs her own company and raises awareness in Jack’s honor. (I love her tagline so much that I want to get it blown up on a huge print for the boys’ playroom!) She sums up the struggle of my grief-process into one, short/sweet sentence: I have a valid reason to give up – because a huge part of me is now dead – yet it’s BECAUSE of his death that I ultimately refuse to stop trying. He fought so hard… the least I can do is keep fighting for him.
Here are some pics of me and the boys wearing some of our favorite items from Sarah’s shop, plus a few others I have on my must-buy list! $5 from every “You Are My Favorite Reason To Never Give Up” tee purchase is donated to the Gwendolyn Strong Foundation. Plus, enter special code: CRUZLOVESJACK20 at checkout to receive 20% off anything in her shop, as a thank-you to my readers for supporting SMA research! I love it when I buy something and know that a portion of my money is going towards a good cause! Don’t YOU!?
She has lots more cute stuff in her shop that I’ve been ogling…
Checkout these other FAB items from @ShopJumpingJack!
Etsy Shop: www.jumpingjackjack.etsy.com
Thanks for reading! Remember to use code: CRUZLOVESJACK20 for 20% off!
(offer valid 11/20 – 11/23)
<3 together we can cure SMA <3