“Bravery” – Beth

I woke up this morning with anxiety. We needed to change my daughter’s g-tube today. Through the course of treatment for GAMT, it became clear that she needed it for several reasons—medication administration, additional nutrition. She may not always need to use it as she gets older, but it was the best decision for us at the time. Because the g-tube can physically deteriorate, it is necessary to change it every few months. I do this for her at home. It’s not a great experience for either of us. Despite changing it every few months for the past five years, the idea of it still derails her.

I walked out of my room where Celia met me in the hallway. She knew it was g-tube- changing day. She handed me four blue Post-It notes on which she had scribbled little messages. The first said, “I want a double chocolate donut for me.” When we know we have to change the g-tube, we ask her what kind of treat she wants as a reward. Sometimes it’s ice cream, sometimes it’s candy. Today she chose a donut. The next note said, “I know that the hole is there already.” This is what I remind her of when she gets anxious about the process. I remind her that I’m simply inserting a new device into the hole that’s already there. The third note said, “I want to take a bath.” For whatever reason, she likes to bathe after the process is done. And I am not the parent who will pass up on a child asking to bathe.  And the last note said, “You know that I am scared for me.” I couldn’t read it without choking up a bit.

This is not the first time she’s had to battle her fear. Part of GAMT is a lot of pokes, procedures, tests, and doctor visits to check progress and discuss care. Unfortunately, Celia has major anxiety about her hospital visits. Even though these visits are now a routine, her fear has become too big to handle. We’ve had to call in social workers, special lab teams, the works. Celia has been known to vomit and faint in the course of these visits. The anxiety is now bigger than all of us. I get it. She’s sick of it all. She’s been doing all this for seven years.

It made me think about how brave our creatine kids are. GAMT, CTD, AGAT.

I wish my kids wouldn’t have to routinely deal with situations that evoke fear and anxiety. Like all parents do, I tell them I would take it for them in a heartbeat. But I can’t. We’ve sat in offices until we finish the procedures. We’ve pleaded. We’ve dodged their punches. We’ve kept them from tearing out IVs, ripping off leads during EEGs. Against our better judgement, we’ve held them down to get things done. Celia has broken my heart with her confessions of fear. And let’s be clear, I am very aware there are people dealing with much bigger struggles than these issues. I know enough about the world to know the dire problems some are dealing with. I’m so grateful we are not dealing with those struggles. But for my 8-year-old and her world, these problems are insurmountable.

But here’s where it gets better. My GAMTers are brave. Braver than most. I have complete confidence that this adversity will serve them in the future. I wish she didn’t have to process some of the most complex human feelings—fear and anxiety and bravery—so early. But if we can harness all that emotion and help her understand it and cope, she will be just fine.

After one long day at the hospital last year, we treated the family to a visit to the American Girl store where the girls picked out souvenirs. (Our son was not impressed by this offering. He found redemption in the pizza for dinner.) On the way home from the hospital and American Girl store, in the quiet of the car, Celia reflected on the day and declared that she didn’t deserve to get anything at the doll store because earlier, she had cried and wasn’t brave at the hospital. My husband and I stared straight ahead, lumps in our throats, hearts breaking. After collecting myself, I was able to answer her. I explained that she is allowed to cry. She’s allowed to be scared. She’s allowed to be mad. But bravery is doing it despite all those feelings.

So this morning when she presented me with those scribbled notes, I remembered how strong she is. That even though she is scared and she might cry and she might beg, she goes through with it. That is true courage.

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” -Nelson Mandela