When Your Grandchild Has Spina Bifida

This is a guest post by my nana friend Kelley. Please read and leave her some encouraging words and comments!

By Kelley Komaromy

Spina Bifida affects the entire family. As a proud Nana to our beautiful granddaughter, Callista, I can attest to this. From the day we found out Callista had Spina Bifida and every day since, it has affected us. When you find out you are going to be a grandparent It’s not something you ever think will happen to you. Its not what we envisioned. I never imagined to be able to set up a feeding pump, know how to administer emergency meds in case of a seizure or learn about Shunts or Hydrocephalus.

Helping take care of Callista and learning about Spina Bifida has taught not only me but our whole family so much! It has brought our family closer than ever.We have learned to slow down to enjoy even the littlest of things. We have become advocates for not only SB but any special needs. We have been blessed with new friends who have shown support, love & prayers. Many of these new friends are on the same journey we are, some we have met in person others only on the Internet.

We have had so many others join us on this journey on Callista’s page, her Prayer Warriors have pulled us through so much.have been amazed at the true friends and family that have been there for us. Our hearts were warmed by the support that was shown at the Benefits even from strangers. We have learned there are still good people out there.

Even though it has been a rollercoaster ride of ups and downs we ask that you don’t pity us or feel sorry for us that’s not what we want or need.

We may have to do some things differently but we are still Grandparents. We like to be asked about Callista and believe me we have videos and pictures to show. Don’t be afraid to ask any of us questions. We Love meeting prayer warriors from her page so don’t be afraid to say hello you all mean so much to us.

Spina Bifida doesn’t define us but it has affected us all. Feel free to share Callista’s Journey or support Spina Bifida Awareness, or donate to COSBA.

As for this Nana, “Its not always beautiful but its a beautiful ride.”

You can read more about Callista in a previous NanaHood post.

Callista

Related posts:

  1. A Mother Learns Her Baby Has Spina Bifida
  2. When You Are Not Allowed To See Your Grandchild
  3. What makes a grandchild grand?
  4. What Name Will Your Grandchild Call You?

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9 Comments

  3. What a lovely story. As a soon a grandma to 2 and twins on the way very, very soon I can only imagine your heartbreaks but it is so inspiring to see you teaching others and gaining support for a much needed cause. I hope you have plenty of sunshine and blue clouds in your lives and I will definitely be adding you to my prayers.

  5. Thanks for commenting, Christine. I will be sure and let Kelley know she has comments here.

  7. A lovely post about your lovely granddaughter. You are indeed grandparents and Callista deserves being bragged and boasted about just like every other grandchild. I appreciate learning of your journey as well as info on spina bifida, of which I knew very little. Thank you and best wishes to you and yours.

  9. Beautifully written. I love that you ask to be heard…..”ask me about Callista”…..having lots of photos to share! You’re a loving Grandma who gives so much support to her and her parents as well as sharing awareness to the community. I am closely involved with another grandma whose grandgirl has Rett’s Syndrome. I admire your strength and warrior spirits…. Great post 🙂

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