Prayers (and First Birthdays) for Nella

Prayers for Nella

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!


Comments

  1. Sherri Kuhn says:

    Love that you are traveling to be with such a special little one… I was a one-on-one aide for a classmate of my daughter's who has SMA and life was a struggle. She is now a junior in high school. Devastating diagnosis, and I am glad you and her mom have each other on this earth.

  2. Amy Willis says:

    I followed a blog of a woman who lost 2 children to SMARD, one right after the other, and it is heart breaking. For this little girl to see a year is such a beautiful miracle from God and I pray they see even more!

  3. Adrienne Gilbreath says:

    God Bless, Nella. My friend's son Miller had SMA Type I and was only here 87 days.

  4. Jenny Summers says:

    I am so excited to see pictures!! What an awesome and special trip. I'd love the chance to meet Nella & her family and you and yours, so I consider you both blessed to be meeting each other. I hope you have a wonderful time!

  5. What a blessing that you can be there! I wish I was a little closer to KC!

  6. Oh Nella is beautiful and I follow her story and pray for her as well. I am so glad that you have the opportunity to go an minister to this family. You will truly be a blessing to Grace just as you are to all of us. I am praying also for a supernatural healing in Little Nella’s body and that she lives many many many more years.

  7. That is so cool! I follow her Facebook page and smile each day when I see her photo with the big beautiful bow or flower! Enjoy time with your soul sista!

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