On August 11, 2014, my oldest son (who was not quite two) was diagnosed with Type I Diabetes and I inherently received Type 3 Diabetes: a name "they" give to family members affected by this awful, awful disease. No, I do not have an actual case of diabetes, but my heart aches for my son who forever does.
Diabetes is ugly. There just is no other way around it. It is ugly and relentless and it took up camp in my heart.
We were given a boatload of information while at the hospital, and over the course of the next few days and weeks, we continued to pour over that information trying to find a smidgen of hope for a toddler diagnosed with this disease. There is so much out there for school-aged kids. But the road for infants and toddlers is not quite yet paved with such great information. In a way, we are our own Daniel Boone's-- forging our way through the wilderness and learning as we go. A lot of it rests on our ability to trust our instincts and go with our guts. We were given one book that has been such a beacon. It is specifically written for families who have infants and toddlers who are diagnosed with Type I. This isn't a big book-- it can be read in one sitting if you have the time. But who has the time if you've got an infant or a toddler (with Type I or without)? So, needless to say, it took me a few days of reading it bit by bit. One piece of information that I loved and that I cling to and try desperately to remember is that I am supposed to be a parent, not a pancreas. Checking blood sugars, counting carbs, calculating insulin, squeezing tee-tee soaked cotton balls on ketone test strips, keeping diligent notes of food eaten and units of insulin given, can be overwhelming and it can suck the life right out of you. If you let it. Which I did.
I became a robot. A machine. My child relied on me to give him the correct doses of insulin to let his body function as best it could, and by golly, I was going to be vigilant and on top of it. But I wasn't. I became a pancreas. I was solely focused on keeping Michael's blood sugars from sky-rocketing and plummeting. If we had a to correct a low sugar, I spent the day wrangling high-blood sugars back into check. If we corrected high-blood sugars, I spent the day making sure he didn't bottom out from a low blood sugar. It was a constant game of back and forth, and in the midst of being a pancreas, I forgot how to be myself.
A week after Michael's diagnosis, my husband sat me down. He told me I wasn't the same person I was pre-diagnosis. He told me a piece of me was left in that hospital in Birmingham. I agreed. I openly admitted that I was grieving for my child. I yearned for the life he wouldn't get to have. I longed for normalcy. Do you know how much planning it takes to go to the grocery store when you have a diabetic toddler in tow? Gone were the days of randomly tossing a clean diaper in my purse and heading on our way. Now we would have to pack a water cup, blood meter, insulin, snack, glucagon, fast-acting carbs to bring up a low blood sugar if needed, etc. (Our diaper bag is now rearranged to house these things all the time). I looked at friends of non-diabetic toddlers and wished I could live the carefree lives they got to live-- and I was angry that they didn't even know how carefree their lives were. I agreed with my husband on every point he made. But I didn't know how to change. I admitted that I was being a pancreas.
He asked me what I was afraid of, and I blurted out "I'm afraid Michael will die." Instantly, I felt a weight evaporate. I cried. He said "Oh baby. Michael isn't going to die." As we lay in bed later, he, too, shed tears and confided "The educators and doctors say that Michael will live a normal life, but there's nothing normal about it. That little boy will never live a normal life." And we cried together.
Over the next few days, and maybe even weeks, I felt better. I felt like I could be a mom and just do my best everyday as far as diabetes care goes, and I'd be all right. It worked. For a little while. During this time, I was still vigilant about the ins and outs and ups and downs of diabetes care. I still wrote down the new ratios given by the educators during our weekly (and sometimes twice weekly) phone calls. I was able to offer myself some grace and tell myself daily "Just do your best. Be a parent, not a pancreas."
A couple of weeks ago, I slipped back into pancreas mode. It was a Sunday afternoon when I realized it. Earlier that week, the educators had given me a new ratio to try for lunchtime insulin doses. Although I remembered this on Thursday, Friday, and Saturday, I forgot on Sunday. I miscalculated an insulin dose and gave him half a unit less than what he was supposed to have. Within a few hours, he was acting like his blood sugar was high. After a blood sugar check, I confirmed that it was higher than where I thought it should be at that time. I redid my math for the carbs he ate at lunch and I realized that he should have received more insulin. There was nothing I could do about it at that point. It was still too close in time to when he had received insulin to validate getting any more. So, I just had to let him run around and wear off that high blood sugar. During his running around, he threw a football on the dining room table and knocked over a cup of water and it flooded the diabetes log-book. I grabbed two dish towels to soak it up, but the pages were quickly rolling into waves and I feverishly worked at blotting it dry. This initially made me mad, and then I crumbled inside. It was just water. This shouldn't make me upset. It was an accident. Instantly, I knew. I had been so focused on being a pancreas that I had missed being a mother. I headed to my room, closed the door, sat on the floor and cried. I told my husband that this disease was devastating. I hated getting upset at little things because I was too wound-up inside. I vowed again to give myself some grace, and this time I realized something new. I realized that from time to time, I might slip into pancreas mode. I instructed myself that I might not even realize it when it's happening. I told myself to remember to give grace-- to give it to Michael when he's simply being a toddler, or when he's acting out due to blood sugar issues; to give it to others who are learning to care for Michael as they walk this road with us; and finally, to give it to myself and to allow myself to forgive and to cry.
I still hate diabetes. I'm still learning the new normal of our lives and I still dream about what life was like before diabetes arrived. I try not to imagine our lives in the future as "what if Michael didn't have diabetes." Frankly, it's too painful. And it's unfair. As far as I know, Michael will have Type I for the rest of his life. I know that extensive research is going on to find a cure for this disease. However, that day is not here yet. For now, I must choose to adopt our new normal and welcome it with open arms. Michael didn't choose this disease. God chose to shape Michael's testimony through this disease, and, by golly, I refuse to be a hindrance to that. So, let this be a reminder to myself, I will choose joy today. I will choose to be the best mother I can be. I will choose joy. I will choose joy.
Until the next time,
Much Love. _Reba
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