Life as Levi’s Mom

Exploring the stress of being the caregiver to a Type 1 child. 

 When you leave the hospital for the first time with your newly diagnosed diabetic child, you are sent home with armloads of information.  Our bag alone had three large books, a children’s book, pamphlets and fact sheets.   These books are chock full of the hows, whys, and what to do’s of diabetes.  However, none of these books or fact sheets talk about how the fact that your child has diabetes may or may not affect you, sometimes in ways you are not even aware of.

                In the following months after Levi’s diagnosis, I had many people comment on how well I was handling it.  I heard this from the children’s pediatrician, who welled up in tears himself at one of Levi’s regular checkups; my own doctor, even my son’s orthodontist, and an innumerable number of other people.  It always struck me as an odd thing to say, and it was even stranger that I seemed to be the one comforting them.  What else was I going to do? Levi had diabetes, I took care of him. That was that.  I couldn’t very well curl up in a ball somewhere and cry about it, or waste time feeling sorry for myself.  Was I tired? Yes.  Was I frustrated at times? Yes.  But, the world keeps on turning and so would I. Beside, as a mother of four, I figured I could handle just about anything.  I have always been very confident in my ability to take good care of my children.  From shots to stitches I had made all the decisions, all the calls.  I knew what and when to start them on solids as infants, I decided on bedtimes, what behavior was acceptable and what was not. I knew how to comfort just about any baby or young child.   I put my children first in all things and as such my nicknames ranged from Mama Bear to Mother Goose.  I rarely asked for help or advice on raising my children and took pride in that.  So for me Levi’s diabetes was just one more thing that came with being a mom.  It was certainly the hardest thing, but I could deal with it.  What I didn’t realize was that I was not “dealing with it” nearly as well as everyone, myself included, thought.

                We were fortunate enough to get Levi set up with an insulin pump right away.  Because of his small size and young age, there wasn’t a syringe little enough for his dosage.   Unfortunately, it runs on batteries, and as batteries do, they eventually died.  No problem right?  Wrong. The first time this happened, when I tried to get the battery cap off I couldn’t move it-- I didn’t have enough finger strength.  Greg was 45 minutes away at work, his dad, my dad, our friends, they were all gone.  In a panic and as a last resort, I called my brother-in-law Luke, a deputy that worked night shifts and was usually home during the day.

                Now Luke and I have always been like oil and water, never very comfortable around each other and not quite sure where we stood in each other’s eyes.   In short, he was and is a mystery to me; I never have figured him out and probably never will.  So, the day I called him it was with some trepidation and fear that he wouldn’t come, and I desperately needed help getting that cap off.  Luke answered the phone quickly and without any chit chat I asked if he was working. When he told me no, in a rush I said, “I can’t get the battery cap off Levi’s pump, can you come?”   He told me he would be there in five minutes.  Those five minutes seemed an eternity; my heart was pounding, I couldn’t sit still, and I was pressing my hands together so hard, my wrists hurt.  I could feel the rising tide of panic in my stomach as each minute that passed was one more minute Levi was without the insulin he needed to survive. Of course, through all of this, Levi, was rolling around on the floor like a little bear cub, playing with his toes, blissfully unaware that his Momma was nearing an all-out panic.

                Finally Luke arrived; I ran out the door and thrust Levi’s pump into his hands.  He fiddled with it, asked if I had a spoon, and using the spoon, had the battery cap off in seconds.  He put the fresh batteries in and as I reattached Levi’s pump, asked how long Levi had been without it.  In a tight, breathy voice I told him “15 minutes”.  I was fumbling with the buttons on Levi’s onesie when Luke put a hand on my shoulder and asked if I wanted him to do it.  My hands were shaking and I was trembling so badly, I couldn’t even put Levi’s shirt on.  Luke dressed Levi, helped him up, and with that Levi toddled off to chase the kitty with a toy.  As Luke turned to go, I put my hand on his arm to thank him. He turned back to hug me and then my legs started to buckle.  At first he stood there with me, awkwardly patting my back but I was shaking so badly, he ended up supporting me, rocking back and forth.  Finally, when I felt like I could stand on my own again, he let go, but kept one arm around me for a little while longer.  Gradually the trembling stopped, my breathing slowed and once he was sure I was okay, he left.  As I sat there watching Levi, still tense, but ok, I realized that maybe I wasn’t doing as well as I thought.  Not only had I needed help from the most unlikely of sources, but the fact that I had been such a hysterical wreck was shocking to me.  I had never been so out of control or so vulnerable in my life, and it was over a battery cap.

                A few weeks later, at Levi’s endocrinology appointment, Levi’s doctor asked how things were going.  I told him I was fine, except for the panic attack I had a few weeks prior when I couldn’t get the battery cap off.  First he asked me if I had forgotten how to dose Levi with the syringe. When I told him no, but at the time I wasn’t thinking clearly, he started to frown.   He asked who did the majority of Levi’s care.  I told him that I did 100% of it.  He gently chastised me saying that with my other children, and now Levi with diabetes, I needed more support and help.  Some of his other patient’s parents had actually ended up having nervous breakdowns.  He understood that because I was home with Levi and Greg was working, it only made sense that I had taken on most of Levi’s care.  But given what had happened, the doctor was concerned.  He reminded me that the best way for me to take care of Levi was to take care of myself and share the load with other people, and for heaven’s sake ask for help-- train someone other than myself or Greg, so that for a few hours, I could can have a break: a way to “reboot” and prepare for the next obstacle.

                Luke and I have since developed something of a friendship.  He still remains a mystery to me, but if I need him, I know he will be there if he can, and that it is okay for me to ask.  Though thinking about the day I fell completely apart still shocks me, I comfort myself with the knowledge that as a deputy, I am probably not the first distraught person Luke has had to comfort.  More than anything though, Greg and I are happy to have one more person to help out when necessary.  It has also taught me another valuable lesson.  I have learned not to push all the stress, frustration and sometimes fear away because there is no shame in it and ultimately it will come out in ways you may not be able to control.  Something as simple as a battery cap can send you over an edge that you didn’t even know you were on.

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There is no book or guide that can tell you how having a diabetic child is going to affect you.  All you can do is make the best of it, ask for help when you need it, be thankful for the good days and persevere through the bad days.  Most of all, enjoy watching your smiling baby rolling on the floor, looking like a little bear cub playing with his toes.