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.

4 comments:

  1. Beautiful, as always. I get the "I don't know how you do it" and the "I could never do that"'s about being a single mom too...I've learned (or choose to think) that's people's way of giving a compliment in a difficult situation.

    You and Laila are beautiful and have SO much of life ahead of you...you're a true inspiration!

    ReplyDelete
  2. If your daughter is still able to be active and have fun, Mom must be doing something right!! Don't give up hope, as she gets older things do get better and controll gets better. As a 13 year old who was diagnosed when she was 5 I know how you feel, and so does my mom. Guessing carbs is hard but it does get better! You have a beautiful daughter and I have no doubt she grow through out her diabetes. Afterall diabetes matured me in so many ways I didn't know were even possible! I hope Laila is doing well. Oh! And those parents who say they'd never be able to care for a diabetic child : Its not a choice. You can't choose diabetes. Somehow it chooses you. So show them that you both took it head on and it made you stronger. Diabetes doesn't have Laila or me: We have it. We control it. We live as we learn :)

    ~Hayleigh T1D of 8 years!

    ReplyDelete
  3. You're not alone! my son, Kaeden, is 11, and was diagnosed with T1 when he was 6... we've been living with this crazy, awful disease for 5 years now. do you know if there are other T1 families in your town? a few years back, one mom from our area started a playgroup/support group for T1 families.. the kids get together and play, and the parents supervise and talk about everything T1. they have been a great support to me, and it helps my son know that he's not alone either.

    if you ever want to chat, i'm at gooberific@yahoo.com :D

    ReplyDelete
  4. Your post is extremely moving. I'm a type 1 diabetic, have had it for 24 years. I'm now a mother and live in hope my daughter will not get it. It's interesting to read it from a mother's perspective. Rest assured your daughter will be just fine. Diabetes teaches you so many things, maybe the hard way sometimes, sad to say I don't remember my life without diabetes, and to be honest I'm alright with it now. That's the way it usually ends up for us. Take care, strength to you both. x

    ReplyDelete

Leave a comment or inspiring note for Laila!