Military Special Needs Network

Proudly Supporting all Military Families with a Special Needs Dependent

You Don’t Have To Pretend It’s All OK

Miranda_JosieBeing the parent of a medically fragile child has made me the master of hiding tears behind a fake smile while saying the words my child needs to hear;

“I know it hurts but you are almost done.”

“You are so, so brave.”

“Just a few more steps- you got this.”

“I know you are disappointed that you can’t do ___ so let’s do ___ instead.”

I have held my daughter’s hand through countless medical procedures, supported her weight with one hand and held the surgical drain coming out of her head with the other, and reworked playdates, birthday parties, trips to the park to accommodate her physical restrictions. I have been her rock and I did without ever showing how much each of these things killed me inside.

All of that came to an end over Memorial Day weekend. My daughter’s Girl Scout troop had their annual spring camping trip- an event my daughter looked forward to for months. This camp was going to be different than all the others she had attended- it was the first one since her physical restrictions had been lifted. There wasn’t going to be any “I know you are disappointed that you can’t do ___ so let’s do ___ instead” or any sitting watching the fun from the sidelines. This was her year.

The morning we were to leave for camp, she was up hours before she needed to be and had her shoes on before I had even opened my eyes. There was no way she could sleep any longer with all her excitement.

Unfortunately, Mother Nature didn’t get the memo that this was THE year. From the minute we got to camp, it rained. This wasn’t your normal spring showers; it was down-pouring in the bitter cold. Even still, my daughter was ecstatic to be there.

I don’t know if it was the lack of sleep, being incredibly cold, or too much physical activity but something set off a chain reaction of things in my daughter’s tiny body- her heart raced, her whole body hurt and she struggled to catch her breath. There was nothing I could do to stop it at camp; she needed warmth, quiet, and the comfort of home.

I knelt down next to the chair she was sitting in and before I even said the words, she knew. She knew this wasn’t her year. She knew it was time to go home- less than 12 hours into her three-day camping trip. She began to cry, I held her close, and for the first time I began to cry in front of her. My normal upbeat messages were replaced with ones that let her know that I shared her hurt.

“I know this sucks.”

“I’m so sorry.”

“I’m sad you have to miss out again.”

She hugged me tighter.

That moment was imperfectly perfect; she didn’t have to be brave and I didn’t have to pretend I was ok with the hand she was dealt. I was her rock and she was mine.

miranda

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