Not only does Ian’s blood sugar run high and low, but so do my emotions, my energy and my days, in general.
One night I will sleep great, the next….horribly.
My appetite is up and down as well. I don’t eat much until we sit down to dinner and even then, I am really not that hungry.
My mood is all over the place. Yesterday I felt relatively “high”…with less tears and less sad thoughts.
Last night (Day 10) was the best night we’ve had so far. We were almost normal again. Laughing, dancing, and singing in the kitchen after dinner. The kids played and made a video. It felt good to feel so good, but I knew it would probably be a fleeting moment.
Today I am just blah. After going to the grocery store and aimlessly walking around for over an hour, I have been home and have accomplished nothing except watch t.v.
Now I look at the clock and panic because I have to pick up the kids in 40 minutes. I have nothing to show for my day at home except more groceries in the pantry.
I used to love rollercoasters. Oddly enough, the last time I rode one was when Ian was three months old and the first ride at Cedar Point made me completely sick. I didn’t ride another ride the rest of the day.
And now I am on a rollercoaster with a track that never ends. A rollercoaster with dips and hills, high speeds, jerks and turns.
I hate the elephant in the room…..the big, old, stupid, gray elephant…the one with the big dark storm cloud hanging over his head.
The easiest way for me to talk is in technical terms.
I know when my friends text me, they don’t want a report on his blood sugars and insulin doses, and the breakdown of his carbs at lunch.
I know when they say, “How are things?” they mean with me, with him, with our emotions.
But the big, old, stupid gray elephant looks at me with sad eyes and just shakes his head.
The exhaustion set in after the first night. I barely slept as I laid beside him in the hospital bed.
The second night was better. We both showered before bed and were either a little more relaxed or just so exhausted, it was easier to sleep.
In fact, we both slept through the 2 a.m. blood sugar check.
Every night since then has been exhausting.
Falling asleep is difficult, no matter how tired I am.
Sleeping soundly is difficult, as I wait for the alarm to go off for another 2 a.m. check.
A low blood sugar at 2 a.m. makes sleep afterwards practically impossible.
The thinking, the thought, the emotions…it’s all so very draining.
Sometimes I say it’s like having a newborn. You need to sleep. You need your rest. Yet, you can’t. And the baby still gets up during the night.
But in this case, you get up to check on your baby.
Much like texting, Facebook provided me with instant access to many people at once and I could give updates, with pictures. Because I was essentially “alone” in the hospital, this was huge for me. The updates were comforting for my family as they could actually see the improvement.
By providing periodic updates and receiving notes and comments, I felt very loved and knew that Ian was in many people’s prayers.
The updates below will always be special, if not bittersweet….as they capture the bravery and personality of my little man perfectly.
Jan. 4, 2013 Ian is eating his low carb dinner and watching football and is a relatively happy boy. We’ve had a long day and we have a big hill to climb. He was diagnosed with juvenile diabetes today. 😦 We are at Akron Children’s for the next few days to get him regulated and get us educated. Thank you in advance for all your prayers.
Sweet dreams buddy. Tomorrow will be a better day.
Jan.5, 2013 Update on Ian: His blood sugar is coming down. He’s handling the insulin shots a little better each time (alot of it is more nerves than pain) and he’s ready for some football. We learned a lot about his diet and the actual disease this morning. This afternoon: diabetes management and all that jazz. 🙂 Thank you to everyone who has offered advice and information. We will be taking it all in in the next few days. And of course, thank you for the thoughts and prayers.
Some lunch and a visit from Uncle Taylor…good for Ian and good for Mom. 🙂
Lights are low. Football is on. No more talking or training for today. Good thing…my brain is full. Keep telling myself “knowledge is power” and I should feel pretty powerful now.
He’s taking charge, doing the math, and counting his carbs for breakfast. Love this boy and so proud of him. Night everyone!
Jan. 6, 2013 We are now waiting to be discharged!!! All of us have had a chance to test his blood and give insulin so we are as comfortable as we can be at this point. Now we have to plan meals and snacks, get supplies and meds organized and meet with some staff members at his school. After a good nights sleep, Ian and I are both in better spirits. In the words of Ian, “Let’s do this thing.”
One of the hardest things for me to do was talk on the phone that weekend.
I made a few phone calls on the hour drive to Akron. Ian was in his dad’s car in front of me, so I would have some time to make some calls.
I called my sister who is a nurse. She was professional and matter-of-fact and reassuring, although I am sure she knew it was far more serious than I did at the time.
I called my best friend in another state and left a message. I could easily state the facts (“Ian has diabetes. We are going to the hospital. We will be there a few days.”) but it was when I went to hang up that I got choked up.
The same thing happened with each additional phone call…to my friend Stacy, and to my boyfriend. The “good-bye” was the hardest part.
For the rest of the weekend, I only used texting to communicate with others.
It offered privacy as I sat in the room with my ex-husband and his wife and with Ian, who did not need to hear the details.
I was able to send mass texts and carbon copies to dozens of people.
I could constantly and easily be in touch with my parents, my daughter and my boyfriend without having to disguise the shakiness in my voice.
I did talk to MJ’s best friend’s mom because I needed to have a back-up plan for her. Knowing that at this time she was dealing with her father’s cancer I was somehow able to talk a little easier to her, or at least not be afraid to let her hear my voice quiver.
With the exception of Ian’s 12-year-old sister, I had no other concerns in the world. I knew she was in good hands that weekend, with her stepmom the first night, her grandma the next morning, and my boyfriend and his kids for the next 24 hours.
Work, bills, the house, our weekend plans…none of it mattered.
I have an education blog that I have been very passionate about for almost a year. That night, as I sat in the rocking chair and watched Ian sleep I wrote a post for that blog excusing myself for an undetermined amount of time. The title of the post:
Nothing Else Matters
One thing that hit me in the hospital that first night was that this was something that would be with him forever.
It would never ever ever go away.
He’d never be “in remission” like cancer, or grow out of it like he could with an allergy.
This would be with him, with us, every single day for the rest of his life.
Unless they find a cure….