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When My Teenage Daughter Was Distraught Over Her Diagnosis, Her Grandma Told Her This


A couple of months ago, my 13-year-old daughter, Shea (pronounced Shay), had her yearly appointment with her orthopedic surgeon to monitor her congenital scoliosis (a 30-degree C-shaped curve in her spine due to a half-formed vertebrae). We learned that she will most likely not need corrective surgery because she’s most likely done growing. This is good news and not-so-great news, according to Shea, who’s only 4′ 7”. She wanted to be at least 5 feet tall, but it’s not meant to be.

Shea is used to disappointment and challenges; she has a lot of other chronic and/or reoccurring medical conditions including Chiari malformation, Klippel-Feil syndrome (KFS), Tethered cord syndrome (TCS), cardiac heart block and bilateral moderate-to-severe hearing loss. She’s always been tiny for her age. When she was born at 34 weeks gestation, she only weighed 2 lb. 8 oz. On her first birthday, she weighed a whopping 12 lb. Now, at almost 14, she’s about 79 lb.

I knew that she was upset and disappointed to hear this growth news, and I tried to focus on the positive: her not needing another major surgery. But I, too, was fighting back the tears as we checked out of the doctor’s office — not because the medical community will classify my daughter as “short stature” for rest of her life, but because I could feel her all-too-familiar sadness and pain that comes from being the kid who’s different.

Later that night, Shea called my mom and told her the news. Let me just say that my mom is a Godsend for my kids… especially for my daughter, who doesn’t have any real close girlfriends.

The conversation went something like this…

Shea mumbled something under her breath.

Grandma: “I’m sorry, honey, what did you say?”

Shea: “Nevermind, it doesn’t matter.”

Grandma: “Yes it does. Now, I’m really curious. What did you say?”

Shea: “I was just talking to the man upstairs.”

Grandma: “Oh really… what did you say to him?”

Shea: “I asked him why I was born like this. Why did he make me with so many challenges? Why did he make me with so many things wrong with me?”

Grandma: “Shea, we all have challenges.”

Shea: “I know, I know, but I have to go to way more doctors than anyone else I know. Why did I have to be born like this? It’s not fair.”

Grandma: “Shea, when you were born, you were so tiny, we didn’t even know if you would live. But your mom and dad loved you before you were even born, and when they saw you for the first time, you were just perfect to them and they fell completely in love with you. And so did Grandma and Papa, and also me and Grandpa… and everyone who met you. To us, you were and are just perfect, no matter how tall you are. You are a beautiful, smart and talented young lady.”

Shea: “You all really loved me right from the start even though I was too small?”

Grandma: “Absolutely… more than you will ever know.”

Shea: “OK, I guess I will just have to keep fighting through these challenges.”

And then they went on to talk about school and other typical things.

I cried when my mom told me about this conversation. When I told my husband, he cried too. And then we moved forward. I’m so glad my mom has got my back… Grandmas rule!

SheaandGrandma