Nikki’s 9th live-a-betes anniversary is just around the corner. This year has been a little tougher than some because of the additional diagnosis of celiac disease. I’m noticing some signs of ‘diabetes burn-out’ or maybe it’s just burn-out in general. As her mom, I feel pride in sharing the astounding strength I see in my child; but she is only 14 years old and has so many things going on in her young body that sometimes it all seems too much for her.
Tonight, as we were driving home from an event about 1-1/2 hours away, we had to stop for dinner. Of course, any trip or event we attend that involves food now means that we travel with a food kit; just in case the people we are visiting or the venue we are attending doesn’t have anything Nikki can eat. So I did have food with us, in the event we couldn’t find a restaurant between the town we were in and our home. I used my nifty new APP – GF Fast Foodand it was great; BUT simply listing that hamburger patties are a gluten free choice is a little misleading. Yes, hamburger is gluten free; HOWEVER, what spices are used? Is it prepared on a grill/stove where other foods, containing gluten, have been prepared? Cross contamination is always a concern. We were discussing these matters when I noticed Nikki had gotten very quiet. This usually means she’s upset or frustrated and she’s trying not to show it. I gave her my standard “you know you will eventually tell me, so let’s talk about what’s on your mind”. Little, silent tears began running down her face. In a VERY quiet voice, she replied “I’m so tired of it all. I just want to be able to eat what I want, without thinking about 10 million things that could hurt me”. BAMMMMMM; my heart shattered into a thousand pieces. I hugged her, gave her a few minutes to work through what she was feeling, and then we regrouped and started over.
I asked her if anything sounded good. She wanted Arby’s. We stopped at the next one and went in. I gave the staff a synopsis of our situation and they were more than willing to help us – a very sweet group of people. Nikki ate roast beef, freshly prepared on a separate cooking surface, placed immediately into a plastic container and sealed for us. Then they gave us an individually wrapped fork so she could eat the roast beef. She also had potato cakes, prepared in a fryer for potato food only and a side container of cheese to dip the potato cakes in. She topped it off with a Diet Mountain Dew. NOW, you are probably thinking that it was meal loaded with carbs….nope. The only carbs were in the potato cakes. So, even though it wasn’t the healthiest meal – it was just what her heart needed………a little comfort food. We need to make the most of these moments and find them where we can in order to avoid a full blown burn-out episode.
As a mom, I HATE that I can’t take any of this away from my girl. However, I have to remember to keep these awful feelings of uselessness and heartbreak in check – I don’t ever want to make Nikki feel like a helpless victim. We all have brief pity parties, and that’s normal. I just want to make sure I am a mom that EMPOWERS my child; not emotionally paralyzes her. Empowering her means I need to make sure: (1) I’m giving her the support SHE needs and not the support that makes ME feel good, (2) I do not become the Diabetes/Celiac Police – Nikki is quite capable of taking care of many of her own D needs and is comfortable letting me know when she needs help. She can read food labels better than most adults. She knows, for instance, that a food label stating “contains modified food starch” but doesn’t specify “modified corn starch” means she needs to check and see where (what country) the item was manufactured and ( 3) help her find ways to channel her frustration with both diseases into her art, cooking and raising diabetes/celiac awareness.
Diabetes burn-out can take over your life and cause long term health complications (that is, on TOP of complications that are faced even when a T1D is obsessively vigilant about D control). 9 years ago, I faced the harsh reality that I simply cannot spare my children every monster they must and will face in their lives. This is a reality that seems to like keeping me company – as if I could ever forget. Yet, a truth that is WAY more important than any monsters in our lives is what I hope to instill in both my daughter. That is: Life is full of uncertain, unfair and often scary moments and lessons. But the lessons about laughter, love, faith and victory are stronger and brighter than any monster you will face. If GOD brings you to it…he WILL bring you through it.
All for now….