Some days are like this. I am normally a positive, upbeat, full of faith person of reasonable intelligence. But we all have those days, the days when you wake up and forget to thank God for His blessings and another day to find joy. It makes you wonder what you were dreaming about, before the eerie chimes of the cell phone alarm begin ringing like hells bells. And I dream A LOT – most likely a side effect of frequent waking to check on my daughter’s blood sugar. The luxury of jumping back into a pleasant dream is lost, but avoiding a recap of the nightmare du jour is a relief. I digress.
I put my daughter on the bus this morning. If I hadn’t mentioned it previously, she didn’t ride the bus until this year. Last year, amid all the other changes we were experiencing, I elected to drive my children to school – for not only continuity’s sake but for the sake of safety as well. Putting my T1 daughter on the school bus – out of my reach and her glucose meter – was something akin to pulling out of my driveway blindfolded…. Sure, I can’t see what’s coming, but I can feel the prickling of danger on the back of my neck. But this year, she begged and begged to please let her ride the bus and I – in my continuous effort to avoid saying “no” to such ordinary things that other parents don’t give a second thought to – let her be a normal kid and conceded. There are so many things that I have to think about, and so many times when the answer just has to be “no.” And trust me –there isn’t a single kid out there with diabetes who doesn’t know what it’s like to have to consider every little detail in their lives. Not one who doesn't know what it feels like to know they are “different.” And that’s where this story begins.
I put my daughter on the bus this morning. My very independent, boiling cauldron of fire – who, at 7 years old, showers on her own, dresses herself like a typical teenager, does her own hair, is apparently dating someone, and completes her homework on most days with no help from me – stepped onto the bus and sat down in the first row. Through the tinted window her little head was turned toward me, so small is she that half of her face is invisible below the window. I waved a cheery wave at her and turned back up the drive as the bus pulled away. It’s like this every day that she rides (and admittedly, there are days when I still drive her), and every one of those days I wait for the absence of those pangs of anxiety. It’s been 4 months, and I am still waiting. Today, though, whatever the reason… I just started to cry.
I think about her, all of her independence and her assertions that she is “old enough” to do this, and capable of “that.” I see her impish grin, as she jumps furniture in the living room like she’s jumping rocks in a river. “Watch this!” She implores. And I hear myself tell her impatiently to stop jumping on the furniture like that, feeling edgy because I’m sick, and agitated by the velocity of time. I think about how she challenges me on every God-forsaken thing, demanding my justification for whatever it is she sees differently, and never taking no for an answer. I think about how she screams indignantly when things don’t go her way, or when Owen is teasing her mercilessly, and how nasty she can be towards me when her blood sugars are high. Or low. Or on target. I think about how she wraps her arms around me and hugs me with the ferocity of a python, and tells me I’m the best mom ever. I think about all the little notes and drawings she makes me, testifying her intense love for me and how much she likes being with me. I find them everywhere, she makes them almost every day. And today, for some reason, it just hit me like a summer heat wave on blacktop. She loves me so much. She loves me the way I loved my mother, when I was a little girl. The woman she looks up to for guidance, reassurance, and approval – the woman who is her “rock” and on whom she knows she can depend for anything – the woman who is her very best friend in the whole world, who will never intentionally hurt her, and with whom she is safe to always be herself, no matter if her self on any particular day is behaving like a monster. The woman she feels she would be lost without. And fresh tears sprang to my eyes.
I put this little girl on the bus this morning. I never see her as vulnerable, but rather – she is strong and capable – like me. I do not focus on her limitations, or her diabetes, or anything. I don’t make excuses for who she is, or for her bad behavior – regardless of its cause. Seeing her small head through that window this morning, it pulled at the fragile threads of my emotional existence. I’m an extremely emotional person, I’m just good at keeping it from running away without my permission. She is just a little girl. A little girl whose very life depends on my ability to be her pancreas, on an insulin pump not failing, and a glucose meter being within arms reach at every minute of the day. And now she is old enough to grasp the dangers that accompany her disease, with every question she asks me… what happens if I don’t get my insulin? Will I die? What happens if I take too much insulin? Can I die? How long will you live mom? Who will change my infusion sites after you die? Who will take care of me, when you’re not there anymore?
I put my daughter on the bus this morning. Knowing that I’m just a phone call away, if something goes wrong, and yet – this bus driver wouldn’t be able to save my child’s life, if it came to it. She doesn’t have glucagon on the bus with her. My daughter can test herself, and she does feel her lows. So, as a condition of riding the bus, she must carry her own supplies in her backpack: meter, snacks, and candy. She knows what constitutes a low. She doesn’t have to know the calculations that I use – she just has to test herself and grab some candy. I had to tell her that I trust her not to sneak this candy, just because she can. I had to empower her to speak up and tell the person in charge – teacher, nurse, bus driver – that she feels “low.” There is absolutely NO room for shyness. And THIS was the most important thing she has had to learn in the two years she has been in public school, while exercising her rights to attend school and have peers.
For the last 5 years I have focused only on today – what we are doing today – and I keep my head down and plow ahead with the daily routine of a diabetic child. There’s never been any room for any negative thoughts to pass through my mind. Her father used to accuse me of “not caring” about her condition – because I didn’t bawl my eyes out every single day after June 2007. I cried plenty of tears – for 5 days in the Children’s Hospital of Philadelphia – I opened the floodgates and released all the pain and the shock of watching my pale and lethargic daughter hooked up to every machine imaginable, nauseated over the recurring revelations that she will need insulin shots for the rest of her life, my ears still ringing from the news and her tiny screams for five solid days. But the day I walked out of that hospital with her in my arms and a bag full of diabetes supplies, I felt only the nausea that accompanies the fear of failure, and complete physical exhaustion. I was done crying. I subconsciously made the decision – to use an old tired cliché – to just do it. What other choice did I have? That’s where I get confused when other people say, “oh, I could never do that.” I brushed off my positive attitude and Ava – amidst her supernatural strength to fight me off – today has learned to live with a disease she hates. She accepts the routine, but there are many times she resents that she can’t just grab a pretzel, or a cookie whenever she feels like it.
I put my daughter on the bus this morning. After another of those nights where she is telling me how much she hates diabetes. How it’s not fair. How she wishes she didn’t have to “wear this stupid pump.” She hates too frequent site changes, when her sugar is high and we have to change out the site – again. And why doesn’t Owen have diabetes? She hates that her friends – all 7 and 8-year-olds – don’t know that her pump is not a cell phone and that she is allowed to carry a bag with snacks and candy in it. She doesn’t want me operating her pump in front of them. It’s disheartening that she is no longer a toddler who was more concerned with avoiding the shots and testing – now it’s all about appearances, and who’s watching.
I put my daughter on the bus this morning. After she told me she didn’t want to have children. Why not? I asked. Because I don’t want them to have diabetes like me. It would’ve hurt less if John Cena had kicked me in the stomach. I was so stunned, I had to turn away for a moment so she couldn’t see my face. I quickly tried to recover my emotions before she could see the tears in my eyes, so that I could tell her that just because she has diabetes – it does not mean any child of hers would. I often tell people who ask about my children, that she is 7 going on 14. In some ways she is wise beyond her years, which is why I treat her more like an adult sometimes. When I put her on the bus this morning, I saw the baby she is – so tough, yet fragile, so very young and impressionable. And remembered that I am still her rock – the woman she looks to for knowledge and strength – the best friend who will teach her how to manage her diabetes when she is ready, and who will remind her to do it with a “nothing can stop me” attitude.
I put my daughter on the bus this morning, because nothing can stop her. Because the little girl who knows it all will forget for another day the injustice of a damaged pancreas, and will remember that she also told me that “someday I won’t have a pump anymore.”
Don’t let your struggle become your identity. ~ unknown