"Snapped in plugged in, snapped in plugged in, snapped in plugged in". Three times every night at bedtime I hear this from Taylor. Yes, Taylor you are snapped in and plugged in. You're fine.
"But mom, if I'm not snapped in and plugged in will I die?"
No, Taylor you are fine. I watch you all night.
"Snapped in" is referencing her glucose monitor being snapped in all the way. "Plugged in" is her insulin pump. This is the gut wrenching conversation I have with my 8 year old every night. It's easy to say Mothers' Day of 2009 was the worst day of my life: Taylor was diagnosed at 16 months, in DKA and being lifeflighted out of the state. The first night I held her all night in the hospital (we didn't know about the diabetes at this point, she was admitted for croup). Her breaths were short and rapid. I could feel her heart racing. Her skin was clammy, but she finally was resting. Minutes crept into hours and the morning finally came but something felt different. She was lethargic and limp, her eyes glossed over and I could feel it...she was dying. I could feel her little body giving up. The next few hours are a blur as we went from hospital to hospital to hospital and finally getting the diabetes diagnosis. We were devastated but relieved at the same time, knowing that there are so many horrible things in this world. This disease is livable, it's doable!
Taking her home a week later was like taking home a brand new baby, I didn't know what to do with it. I remember thinking this will never be normal! Counting carbs and holding my baby down for 5 shots a day will never ever be normal. BAM!!! Here we are 7 years later, living our "normal". She's happy and healthy and amazing in every way!! Sadly our normal has consisted of many conversations about dying. I reassure her every night that I am watching her and keeping her safe and yet every night I wonder: Can I keep her safe all night? Will I wake up to check her? What if she dies and it's my fault? Horrible truths, but very real.
Most days I feel like we've got this diabetes thing in the bag, but some days I feel like I'm barely keeping my head above water. As frustrating as this disease can be, I know that it's only my "job" for the next 10 years or so. This is Taylor's forever. I can't promise her it will be easy I can only promise her I will be by her side the whole way!
Guest blogger Asia Higginson is a super Dmom who teaches us everyday what it means to fight a good fight.