I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Wednesday, July 14, 2010

The Beginning

We were traveling down life's road with its many twist and turns. As I spent time packing for our big, much anticipated camping trip I didn't give any thought to the marshmallows, chocolate, and graham crackers for the smores. I threw in hot dog buns, Capri Suns, and ketchup without even glancing at the nutrition label. Little did I know that within a few short hours my world would be spinning with information about carbohydrates.

Looking back could I have had any idea? I have asked myself that over and over, and I didn't see a single sign until that day. Had she lost weight? Maybe a bit...but she was playing soccer. Had she been eating more...well, yes, but maybe she was going through a growth spurt. That day on the way to the campground the writing on the wall was crystal clear.

The night Jess was diagnosed we were on our way to go camping for a long weekend. We had left 45 minutes prior and were headed down the highway. Everything had been great. She was totally herself, had played an entire soccer game 3 days before as we had no subs and was our leading scorer, had gone to a sleepover with one of my friends who is a doc and noticed nothing. It was just regular old normal life and we were so excited for the trip. The girls had helped me buy their first real sleeping bags, the tent was packed...it was a good time.

Jess asked for a drink and we thought nothing of it. Ten minutes later she asked for another. We had just picked them up from school so I figured she hadn't drunk much that day. My husband stopped to pump gas and she asked me for another drink. I told her she had had enough. She begged me for an ice cube..."my mouth is burning." I started to get an uncomfortable sense of dread. Forty-five minutes after we had left home we stopped at a McDonalds as Courtney (our other daughter) had to pee. Jess tried to drink out of the spigot of the bathroom faucet---something her germ-phobic mother has made sure she has never done. I came out of the bathroom, my heart racing, and told my husband we had better check. I thought I was over-reacting but didn't want to get to a campground late at night with unknown cell phone coverage. She begged us not to check. Jessica is my child that screams when you brush her hair. I always joke that she will have fibromyalgia...she just has such a low pain threshold. We held her down screaming and checked. The meter read "critical high" and my entire life shattered. We checked again....surely it must be a mistake...she was just fine...we are going camping...this isn't happening. "Critical High" it read again. Courtney reads our faces and screams "Jessica has diabetes?" Jessica panics "I have diabetes?" I can't think straight. Everything is happening so fast and we are outside at a McDonalds. I think surely the meter must be broken and I check my sugar---96. I am now completely panicked.

In the ER we tell the receptionist our daughter has new onset Type 1 diabetes. She looks at us like we are crazy...who referred you? We did...she looks like we have lost our mind. We get taken back and begin our ER experience. I ask for the child life specialist which thankfully I knew to ask for. We saw two very bad residents...my favorite phrase by the pediatric resident....after she happily skips in and sings "how we doing tonight?" I answer "could be better," to which she replies in front of Jessica..."Awww...does mom need a box of tissues?" Well, let's see...you just told me my child's blood sugar is 684, and I just had to hold her down while she begged and screamed for me not to let them put an IV in her. And, we have just had to give her her first two shots of probably a billion in her lifetime. I'm a doctor so I've admitted the horribly uncontrolled diabetics. I've rounded on them after they've had their legs amputated. I've seen the 20 year old--who decided to just stop taking her insulin while she used cocaine instead--code in front of me and die. I've delivered the news to her absolutely devastated parents that we did all we could, but we couldn't save her. I now see Jessica's face when I think of that night. Yes, Miss Pediatric Resident....I could probably use a box of tissues! Of course, I keep this to myself and tell her I am fine. Luckily, Jess was not in DKA and we were discharged at 1 am to follow up the next morning with the pediatric endocrinologists at 8 am for 8 hours of education.

The first week is black. I have never felt that way before. I've had some minor gray periods in life, but not black. Just when I thought I couldn't take it anymore...I'd have to start an SSRI or something, it lifts. And, Jessica is the reason. She stops screaming and being held down for shots. She comes up with a ridiculous routine instead that involves counting to 30, singing a song, tapping specific fingers before shots...but she stops screaming. She writes a song. She reads a book about diabetes to her class. She does what every child I have ever known does. She adapts to what is happening better than any adult. I begin to realize that while life will never be normal again, it will be a new normal.

And, that was the beginning.


  1. What you have written is so familiar. I dx'd Marielle myself too having T1 myself. I thought it had to be a mistake. But the meter read "HI." My husband said for the first few days he thought it was all just a big mistake. Marielle's BG was in the 600s at dx too. We stayed overnight at Children's Hospital in Detroit. No IV needed. No ketoacidosis either. I spent the night sitting at her bedside reading the Pink Panther book and figuring out how it would all work out but it has. I thought all night about what I must have missed and wondered how long she had been developing it. When I think back I still cringe b/c M had some accidents the summer before (she was dx'd in Feb) where she just didn't make it to the toilet in time to pee and I thought she was just waiting too long and yelled at her. It still kills me even as I write this that I did that and I know now she was probably spilling sugar for some time before we knew about the diabetes. Right now Marielle is getting ready for bed and singing at the top of her lungs a Miley Cyrus song. Our normal is not everybody's normal but that's okay.

    Keep writing...you are helping other out here in cyberspace too.

    Take care.

    Patti H.

  2. I saw symptoms and ignored them...and I had been an ER nurse for 10 years.

    She was my first. I didn't know what was "normal" when you had a toddler wandering around with a sippy cup of water -- it was July -- 100 degrees/100% humidity. I mean, don't they all just keep the sippy tucked under their arm and bring it to you when it's empty?

    The diapers began leaking. Sheets drenched. Changing outfits several times a day. But then it all stopped. Things seemed normal again. I let my brain wander to the safe place of denial because it was easier.

    We went on a family vacation...half way through her symptoms came back -- worse than ever. I figured we'd be okay to make it until we got back to town. I mean...the symptoms were intermittent, so surely they'd go away again, right? I called to get an appointment for the Monday after we would be returning home.

    Home Friday. Worked 12 hours Friday night, slept Saturday, worked 16 hours Saturday night into Sunday because the day shift nurse called out sick. Came home a zombie...and had no idea how far downhill we were sliding, because I had barely been around.

    Here's the rest of the story...