Tomorrow, I’m leaving to fly to Kansas City until Monday. It might seem random, but it’s actually for a really special reason. Nella, the little girl in the picture above, is turning one. And since she was diagnosed with SMA Type 1 (spinal muscular atrophy) early on, this is huge. She wasn’t expected to live to 6 months and here she is – almost 1.
Her mama Grace and I were pregnant at the same time with Nella and Kaden. She has a little boy, Bowen, and Nella was born on the 7th – 2 days after I had Kaden. She and I connected on a closer level after Nella was diagnosed, and since then we’ve texted nearly every night for months. She has been one of my biggest supports in all of this. She doesn’t have the answers, the “right” words, or share my same story, but we get it. I know I can text her angry, happy, sad, and she’ll listen and empathize because she knows, and I know. Even though neither of us knows each other’s individual pain in all of this, we just are there.
SMA Type 1 is terminal – and I hate it. I wish every single day that someone would find a cure before anything happens. I wish Grace didn’t have to wake up every day with this reality she never expected. I pray that God performs a miracle for them, even though my faith in miracles has been shaken down to very little.
Half a mustard seed at best.
Nella is so dear to me, and many others. Her community on Facebook reminds me so often of you all supporting me as I walked a much shorter journey with Kaden and the twins. It’s beautiful and it’s heartbreaking. When Grace announced she’d be planning her party, I knew I had to be there. I fly out tomorrow for her birthday party on Saturday – and tomorrow is my birthday, so I couldn’t ask for a better present. I’d love to see anyone in the area (I’m at a hotel), but since Grace has such tight schedule with Nella needing care, I’m leaving my time pretty open in case she might be able to get away or have me there.
If you follow me on Instagram, hopefully you’ll see some wild and crazy selfies (two moms at a birthday party – we roll hard) of Grace and I finally getting to meet and me smooshing darling Nella. Please pray for healing for Grace (she’s under the weather and can’t be with Nella until she’s 100% well), and for this to be a time when some of the pain and sorrow that has to occupy so much of these days is lifted just for a few hours for her family.
See you soon Kansas City!