A Mother Learns Her Baby Has Spina Bifida

This guest post was inspired by a chat I had with a nana whose grandchild was born with spina bifida.  The nana put me in touch with her daughter and I asked her if she would write about her sweet daughter (Callista) and her experience. Thank you Kim, for opening the window to your heart and sharing a tiny slice of your life with us.

Getting Your World Turned Upside Down

By Kim Lynch

Since this is my very first guest blog, I am guessing many of you don’t know much about me or my family. In summary, beautiful chaos would be the words I’d use to describe life in the Lynch household since Miss Callista turned our world upside down. At our 18 week ultrasound when parents are supposed to be finding out whether they have a bouncing baby boy or a sweet little girl, we got a diagnosis of spina bifida. It was (and sometimes still is!) a terrifying experience and I was lost for a long time in my grief. I’d like to tell you that I look back now and see the positive in everything we went through as we embarked on the journey of first time parenting and a special needs child. It simply wouldn’t be the truth, but I can tell you that my relationships with family and friends have all changed.

When you spend three months on strict bed rest, you depend on your friends and family members to do every little thing for you. It’s a humbling experience and you learn quickly who will be there for you in the hardest of times. Unfortunately, you also learn who disappears from your life when things get rough.

I’m lucky enough to share with you that my relationship with my family has only gotten stronger over the last three years. I’ve seen my husband become everything I could ever need, whether it is my own walking medical dictionary, Callista’s chauffeur to her many appointments, or a shoulder to cry on when my shadows catch up to me. When you are parents of a special needs child, leaning on your spouse is a make or break situation. My husband and I have changed a lot and anyone can recognize we aren’t the same people as we were three years ago. We are stronger yet hardened, tired yet dedicated to our family and each other more now than ever.

We are the fortunate ones.

I can recognize the changes in myself, but it’s been amazing to see the reach of my beautiful daughter. My closest friends have now become advocates not just for Callista’s cause, but for special needs children in general. My friend circle has widened to an extremely wonderful group of mothers that can answer questions (even some uncomfortable ones; SB moms talk a LOT about poop!), provide reassurance and encouragement, and celebrate or grieve beside you even though you’re miles and miles apart.

When Callista had her last major surgery in July of 2013, people I don’t even know stayed up until midnight with us, praying and waiting as her 4-6 hour surgery became a 14 hour surgery. The community we live in has embraced her and she has educated so many people about Spina Bifida and in turn, they are educating others.

My extended family has also changed in a major way. When you announce a grandchild is on the way, you think of pretty pink babies growing into tiny little people that grandparents can have sleepovers with, chase around the park, and essentially spoil the living daylights out of! Surgeries, feeding pumps, and wheelchairs aren’t part of that picture perfect vision that comes with the announcement.

No grandparent ever gets told they’re getting a grandbaby and imagines spending months visiting in the NICU, sitting in the surgery waiting room on more than one occasion, or having to learn how to work a set of leg braces. But our families have certainly lived up to the expectations.

As a daddy’s girl, I know my father would drop everything to come and rescue me, but becoming a Papaw has made it that much worse for the poor man. If he was wrapped around Callista’s finger any tighter, he’d have to quit his job and move in.

Callista needed a therapy bench: Papaw took care of it! She needed a set of parallel bars: he made sure they appeared too! What, a wheelchair ramp? Once again he made it happen! Callista may not be able to say a complete thought yet, but she can completely control her Papaw!

Every Mom Needs A Team of Avengers

Of course, the part you’ve all been waiting for…the grandmothers! Callista has a Nana (my mother) and a Grandma (my mother in law). Both of these ladies have changed in front of my eyes throughout our experience. I think maybe it’s intended to be the other way around and they’re supposed to gush about how I’ve become a woman and mother, *insert mushy stuff moms say here*, etc. However, I think a role reversal is in order. I’ve never seen two women step up and be there for anyone as much as my moms do for our family.

These two very important women have overcome the initial unknown of having a grandchild with special needs. They’ve learned that sometimes things that seem impossible or too hard, aren’t that big of a deal to us. When I am feeling fierce, they’ve learned when to back me up and when to cool me off and that’s a task worthy of an award. No one wants to sit in the ER for six hours, but Grandma does it anyway. Normal people don’t know how to prime a feeding pump, but Nana does. Each of them has surpassed “normal” Nana status and qualified for the Super Nana title. Everyone always tells me how strong I am, but no Super Mom is complete without her very own Avengers team.

 

Nana

 

Grandma

Come visit us at my blog to learn more about Callista or donate to her medical fund at http://callistasjourney.blogspot.com. All donations go to making our home wheelchair accessible. Join Callista’s facebook group at https://www.facebook.com/groups/callistasjourney/ to see adorable pictures and videos of my sweet girl.

NanaHood friends, please, if you can stop for a moment and pray for this child and her family and if you have been blessed and can afford to share, please donate so Callista’s house can accommodate a wheelchair. Thank you so very much!-Teresa