When you’re young, you dream of what it will be like to be a mom and watch your kids run around and laugh and play. If you have a girl, you can play with her hair and dress her up in cute clothes, and if you have a boy, you imagine how cute and dapper he will be. You never think about the what if’s, because why should you?
After 3 years of trying to conceive, I was finally 20 weeks pregnant with my daughter. I was your typical glowing, soon-to-be mama. That’s when I got the news something was wrong with my little girl.
Fast forward. I had just given birth and she wasn’t breathing. No one was telling me what was going on. I just remember them saying “we have to go” (meaning to the NICU). I begged for someone to just let me see her first. Thankfully, I got to see my little girl, Harlow Jean. The next two weeks were something out of a horror movie, horrible doctors with terrorizing bedside manners, new diagnosis’s daily (lissencephaly, hydrocephaly, microcephaly, epilepsy, cerebral palsy), seizures every single day, and the diagnosis of optic nerve hypoplecia (she was born blind). With time, prayers, and lots of love, Harlow was kicking butt and taking names. She wasn’t “normal” by a long shot but she was a fighter. We had been told too many times to count that she would die or not make it out of the NICU, and each day she proved them wrong by showing how she could live!
Fast forward again, and we’re out of the NICU. Life with our new normal is beginning, and my postpartum is brutal. Daily panic attacks and anxiety for the win. Yeah right, it was horrible trying to manage day to day life with that devil on my shoulders. You always see beautiful pictures of moms with their newborns, but you never see the picture of them crying all alone in the bathroom. Our journey that was just beginning with Harlow was going to be a bumpy ride to say the least. Doctor appointments after doctor appointments. Bad news always and no hope ever. We were not ready to throw in the towel, but we were always the underdogs growing up (my husband and I), so it was fitting that Harlow would prove everyone wrong just like we did. And that she did. Though we live with daily seizures and constant medical attention with emergency room visits and Lord only knows what else, she has proven everyone wrong and continues to do so.
She is the best thing that has ever happened to me. She has taught me so much patience, gratitude, how to see the world through a different lens, and how to stay humble. After Harlow was born, I couldn’t go back to work and people were donating money to help us get by. My pride and work ethic were taking a hit. I had to do something, and that’s how Hope for Harlow was born.
I made shirts to give to people who donated, and earned a living by selling shirts I designed, while taking care of Harlow 24/7. We didn’t want a nurse, because I knew Harlow was my reason for being here, being her mom, her advocate, her nurse, and her protector. Once you learn how to feed a child with a G-tube, you don’t get weirded out very easily anymore.
So here we were, with a little baby with enough diagnosis’s to fill a small children’s book, two new parents, a touch of postpartum, and a new business. What a recipe for disaster right? But now it’s almost 4 years later, and Harlow is kicking butt in school and continuing to prove people wrong about all the things she “can’t do”, being beautiful as ever with the longest eye lashes you ever did see and with a little brother running around making her smile with his day to day shenanigans.
Our small business is thriving, and we’re about to launch our 4th Spring line and adding a men’s line to the mix. It’s been a whirlwind of a ride that constantly pulls the rug out from under us, but we’re still here and SHE’S still here, fighting and proving Hope isn’t just a word, it’s a Life.
Guest Writer – Katie Scott
@HopeforHarlow
@_katiescott_
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