Dreamland Uninterruptus
Moments before, I sneaked into her room, turning on her bedside Tinker Bell lamp. Her beloved “pony,” a well-worn unicorn was tucked beneath her chin and one hand was rested on the bed, palm upright, fingers relaxed as if they were already in position for a blood glucose check.
Immediately after checking her finger, she withdrew her hand, curling it around pony.
She barely stirred. Not even a minute of sleep wasted. Dreamland uninterruptus.
One evening as I snuggled with her in bed before she fell asleep I told her I would check on her in a few hours. Her eyes perked up and she asked, “Really?” I told her that I often check on her in the night but that I’m so quiet and quick that I never wake her.
I described how sometimes her arm is extended as if she knows I’m on my way in. And how sometimes when I take her hand in mine, she quickly tucks it underneath her chin as if in protest. She asked, “Really?”
I pretended to be her, letting her try to get my hand. I quickly pulled it away from her time and again. She giggled at the thought of the midnight scenario, that she could tease me like that even in her sleep.
I feel like the more the burden I can bear, the less she has to. There is time for that. In a couple of years she will be counting carbs and giving herself insulin during school lunch. In just more than a decade she will be living on her own, away at college.
But for now it is my cross to bear. If I can do midnight finger checks and unexpected pump changes at 3:00 am without her knowledge and without her waking, I will. And she doesn’t need to know.
Evidence of a middle of the night pump change and blood ketone check.
One dawn she came to our bed. When she used our bathroom, still groggy, she suddenly exclaimed, “Mommy, we have an emergency situation here. The straw (cannula) is out.”
What she didn’t know was that I had changed her pod in the night and soaked the adhesive of the old one with baby oil so the adhesive would slip off without pulling or irritating. She didn’t realize she had a new pod on her back.
Katie of Musician Mama recently described how a duck swims: “everything looks smooth above the water, but below the surface the duck’s legs are paddling like crazy.”
And that’s exactly how it is for parents of children with diabetes.
It is amazing what we parents do so that the burden falls on us and not our children. It is amazing the knowledge we gain to literally keep our children alive. There is never a pat on the back for us or an “atta girl” but we do it, day in and day out rarely complaining when we have every right to.
We somehow make it look effortless to outsiders. Other parents see our kids on the playground and just see another kid, perhaps just like theirs. Maybe they glimpse the occasional finger check, juice box, or snack. Maybe they even witness an injection or bolus by pump. But they don’t really see all that goes into the behind-the-scenes.
Because we are sleep deprived, we are stressed, and we are constantly thinking about diabetes.
It is like the man behind the curtain.
Read all of my NaBloPoMo 2010 posts.
I went to a parenting a child with diabetes class and they suggested giving ur diabetic child or teenager a day that u do all the diabetes stuff for them. Checking carb counting shots. Just to give them a break. There was a speaker that has lived with diabetes and lived with it her whole life. She said she somtimes has days that she feels overwhelmed and feels like she can’t deal with diabetes any more and days she can get a break are wonderful. I do all the carb counting for adam (7 yrs ) but he does his finger pokes and entering carbs into his pump. I offered him a day but he declined. He said he wants to do it. I’m sure there will come a day he is tired of dealing with diabetes and I will be there to give him a break.
Wow… perfectly said. I love this post.
This is a great post. Well said… and you are so right. I want to bear what I can for now to enable a little less worry and work in for Joe while he experiences his “childhood”. He already does so much. These kids amaze me day-in and out.
Beautiful post Leighann. It amazes me every day that we can do these night time checks and our kids sleep right through!
What a great “nite in the life of” post! Thanks for sharing that!
Wonderful post! Thank you for all that you do for us! Reading you site everyday really helps keep me sane. Just knowing that there are other parents out there that go through the same things is a blessing!!
The first time I changed a site in the middle of the night without her waking I went back to my bed and told my hubsand “I am officially a site changing goddess!” She didn’t even flinch. She never does with finger pokes but usually a site change she at least stirs a little.
Nice post, caused a bit of emotional turmoil here as I can totally relate to this. Hannah is 12 this month and I can still, for the most part, do the 2 am check without waking her. She has zero memory of it but when I ask for a finger in the middle of the night, she slides her hand out from under the covers.
She once told me that while she doesn’t remember the checks, she is really glad that I do them as it makes her feel safe.
Great post! AND SO TRUE!!!!!!!
Beautifully written 🙂
This was beautifully written. I’m reminded of the work my own parents did, quietly, without interruption to my childhood. The part about effortlessness resonates with me too. All people who are managing diabetes (either for themselves or another) have to do that. It’s all part of our magic show. Sometimes I wish more people could see behind the curtain.
Amen Sister, Amen.
Atta girl! You are an awesome Dmom!
I loved this post! I can just picture your little sweetie pulling her hand away in her sleep….mine does that too!
ps Love the Glucagon tutorial link at the top of your blog!!
What a wonderful post! I am amazed that you can do site changes in the middle of the night without her knowing it. Incredible!
Perfectly said – this post made tears come to my eyes. It is so true. The man behind the curtain. What they don’t need to know YET is that we do SO much just to keep them safe each and every day and night!!
Thanks for a great post!
I LOVE LOVE LOVE this post, it is all so true and really touched my heart! There are so many who see us here and there checking and have NO IDEA what it means to have a child with Diabetes. Any one of us D moms would take the disease in a second instead of having our child live with it. I too, often think that I dread the day she will have this burden and so I do all I can do to share it with her until that day comes. I am forever grateful to have friends who are D moms and who truly understand…
Like Laura, this brought tears to my eyes. When I think of all that goes on behind the scenes…night time checks, phone calls for playdates, training counselors, managing a possible sleepover, etc. They should have a childhood and I really think it’s our job to allow that even if that means sacrificing our full 8 hours of sleep a night. They are so worth it.
Atta girl.
I’m 51 years old, and haven’t lived with my Mom in decades. A few months ago, when some sad current events were on my mind, I thanked her for taking care of me when I was a kid.
I’ll thank her again the next time I see her.
Your daughter will thank you decades from now. She is grateful now without understanding. Eventually she will understand, and her love and gratitude will be that much greater.
How true and wonderfully written. I was just thinking yesterday of Lia growing older and one day living on her own and the thought came to mind of a book we used to read the kids called Love You Forever. Cherish these days.
(link to hear it read by the author)
So very beautifully written about a “night in the life” of a D-Mom. Thank you for sharing that perspective. Just like us CWD Who Grew Up, your daughter when she’s older will likely look back on that nightly-routine and your tireless efforts to bear that burden, and appreciate it so incredibly much.
Thanks for the post. I definitely agree that people don’t see what we do. I’ve been so surprised what little support i’ve had from other mums (not d-moms, they’re great). It’s not my friends fault. They just don’t know what we’ve been doing since diagnosis and how much our lives have changed.
I wish I could check my child at night. He screams and pulls away. It takes 20 -30 mins of screeching until he is awake enough to do it himself. I have talked to him during the day about it but he insists I am not to prick him without his permission. Suggestions welcome.
This made me smile… I had never really realized how Adele also tries to pull her arm away during night time testing. I usually just tell her what I’m doing and she starts to cooperate. And doesn’t remember a thing when she wakes up the next morning.
Great post! 🙂
This was the best story I have read in a long time that made me cry… a good cry for the sureal of it all, and so true on every level, it really amazes me how similiar all these children are.
thank you 🙂