Friday, March 22, 2013

When She Cries

About two weeks ago, Laila came home from school, and almost immediately asked for a snack. We were just hanging out in her bedroom, she wanted to go play and asked if she could switch into some comfier clothes. I told her she could have a snack as soon as she changed and she checked her sugar. Almost instantly the tears came streaming down her face, she was practically screaming at me, begging me to let her eat without checking. She never, ever acts this way. Occasionally she'll roll her eyes, or let out a deep sigh, but never does she cry about having to check her sugar. I knew something was wrong, she was either as high as the Empire State Building, or scary low. As if the tears weren't bad enough, she threw up her hands, putting her dotted fingers on display, and shouted, "Look at my fingers!" My heart sank, but a smile spread across my face and I carried her to the kitchen. The most important thing diabetes has ever taught me is to never let on that somethings' wrong.

I held her, rocked her, and offered to check her sugar. Most of the time, Laila chooses to be in control. She checks her own sugar, attaches her own pump, and is even learning to count her own carbohydrates. Once in a while, she'll let me check her sugar-I feel like even if it's just temporarily-I'm taking a bit of a load off. For a 7 year old, diabetes is a whole lot of unwanted responsibility. She checked her sugar to find a whopping 48, not a number we like to see. Not only would she be starving and have to wait 15 minutes before having a real snack, that also meant she couldn't go outside to ride her bike or play with her brother and sister. Anything that could potentially lower her sugar was out of the question, and she knew it.

When she cries, I have to be strong. When she tells me she hates diabetes, I agree. When she wishes it away, I wish it away, too. I am whatever she needs me to be, After she finished her juice, I let her turn on a short tv show and finally agreed to let her have a snack. I was sure she was occupied, so I went into my room and completely, utterly broke down. I lost it, I bawled, wallowed in my own self pity. I cursed this awful disease, I reminisced the day she was diagnosed, and cried for all the innocence she has lost along the way. In the midst of my sob-fest, Laila walked into my room. I didn't hear her coming, she didn't make a sound. I felt her hand on my shoulder, and couldn't help but smile as she wiped my tears away. She didn't ask why I was crying, she already knew. We hugged, and she held me this time. I told her diabetes sucks, and she agreed.

She's so incredibly strong, I wonder where she gets it.

Saturday, January 19, 2013

Searching for Support

Laila and I have never been big in involving ourselves in the Diabetes Community, and lately I've been wondering if we're truly missing out. I've only connected with one other mom on Facebook, through a mutual friend of ours, and I'm grateful for both of them. I received an entire box full of books I have been pouring myself into for the past week, so I know someone out there gets it, somewhere over the rainbow, someone understands. I have tried connecting to others through general groups online, but nothing is very personal, and lots of them just suggest sending your child to a diabetes camp, which Laila's not interested in just yet. I'm the caregiver of a child with diabetes, I don't know what a high blood sugar feels like, I can't empathize with the sting of a pump site injection, I can only speculate, and sometimes I feel like I have no one to speculate with.

So, I find myself here.

Right here.

Alone on a Saturday night, watching the minutes pass by until it's time again to check Laila's blood sugar while she's sleeping. Don't get me wrong, I'm not complaining, I just wish there was someone here, someone tangible who understood. There are so many times I hear people ask me how I do it, and I reply with the same strange look every time. The endless, ignorant questions don't usually strike me as odd anymore, I do my best to educate quickly and to just move on. My heart always sinks to my stomach when someone refers to Laila's care and tells me, "I could never do that," because I was never given a choice not to. When it's a matter of illness or health, literally life or death, you do whatever you have to do. You stop at absolutely nothing for the wellness of your child, you act first, think about it later.

Diabetes is awful. My mind never turns off, it never slows down, it never truly rests. Every trip she makes to the bathroom in the middle of the night, every cough or sneeze I hear from her room, these are the things that haunt me. I constantly wonder if she's thirsty because her sugar is too high, or if she's hungry because her sugar is too low. There are days when it absolutely consumes me, and I feel like I'm sinking. I can only imagine how she feels.

Cooking is one of the things I absolutely love, but it can be difficult when it comes to counting carbohydrates. Laila's favorite meal of the day is breakfast, she would eat breakfast food three times a day if I let her. Unfortunately, next to pasta and rice, it's one of the hardest meals to count carbs for. She loves waffles, pancakes, french toast, hash browns, bacon, and what kid doesn't smother everything in maple syrup? Once in a while, you get lucky. You make your most educated guess, and then you watch the meter like a hawk every hour on the hour for the number to show, and when it's within healthy margins, you feel like a million bucks. Other times, despite your best efforts, your planning ahead and your precautions, you still lose.

Most days, I feel absolutely in control, or as in control as I can be managing my daughter's disease. There certainly are days I mourn the life we never got to have together, because diabetes got in the way, but I remind myself she's just like any other child, and she's unstoppable. She can run, dance, sing, play, swim, jump, and laugh just like any other child. Maybe diabetes has a bigger lesson for me to learn other than learning to draw insulin into a syringe, count carbs, and brushing up on my math skills. I wish I knew what it was, but until I figure it out, we'll just keep on keeping on. Day by day, we make it through this together, Laila and I. It's not going anywhere, and neither are we.

Until next time.