The First Day of Kindergarten When Your Child Has Diabetes

When my son Noal started kindergarten last year, I remember thinking, “How is it that I’m tearing up at the thought of what to pack him for lunch when it feels like I just packed him up from the hospital? How is it we are working on how to print his name when it feels like I just proudly announced it to the world? How is it I’m about to put him on a bus and hope/pray/wish his day is perfect, when it feels like I just taught him the words to ‘Wheels on the Bus’? How is it that I want him to take on the world but at the same time I wish I could remain his entire one?”

With my daughter Pip, I’m thinking all those things plus so much more. Yesterday while getting their backpacks ready, I had to wipe tears away. I had to fight back the anger that was almost choking me because this is all so unfair.

Instead of just getting to pack my daughter a lunch and a set of clothes in case of an accident, I had to count out Skittles and little rocket candies so the teacher and EA have emergency sugar on hand to give if she goes low. 

I had to stock up on test strips and lancets so others can poke her little fingers and report back her blood sugars.

I had to make apple juice and crackers and dried mango fit in a little Tupperware box and pray it’s enough to help her be OK in case she goes unconscious or has a seizure.

I had to make a little bag seem cute so an EA won’t mind taking it to recess or gym class or wherever Pip may wander. 

I had to make up labels and instructions upon instructions, all while feeling so very defeated and stressed.

This isn’t what I pictured when I imagined learning to let go. This isn’t how I envisioned sending Pip off to school. 

I thought I’d be dealing with worrying about her 24-month-old size or keeping a steady stock of wipes. I thought I’d be weary because of her little eye contact and how she has no concept of depth, taking on stairs or hills outside with no fear. I thought I’d be petrified about food and Play-Doh and anything else with gluten getting into her Celiac little body. I thought I’d be anxious because while I understand her, most don’t. She isn’t verbal enough, and while she has lots of signs, we somehow have ended making our own up. I thought I’d be over-thinking what it all meant for her big brother being in the same class and helping her on the shorter bus. I thought I’d be feeling emotional about others accepting her and demanding inclusion at all times. I thought I’d just be scared about letting her go.

Now I’m beyond. Now I have all of that plus Type-bloody-1-diabetes to deal with. 

A few weeks ago when Pip was diagnosed, her blood sugar levels were so high, the monitor couldn’t even read it. Now, however it’s the opposite, and she is dropping low all the time, which is terrifying. Hypoglycemia, also known as low blood sugar, is when blood sugar decreases to below normal levels. This may result in a variety of symptoms including clumsiness, trouble talking, confusion, loss of consciousness, seizures, or death. A feeling of hunger, sweating, shakiness, and weakness may also be present. Symptoms typically come on quickly.

Sucks right?

It’s just not fair.

It’s not fair we have to always be on alert now. It’s not fair she has to have her fingers poked while she cries. It’s not fair we haven’t slept in days because the sample Dexcom we are using keeps alarming because she drops below what is acceptable. It’s not fair we have to tell Noal he can’t have juice boxes but have to keep pumping Pippy with them. It’s not fair our boys have to hear how brave Pip is every time we give her a needle or she demands someone kisses her poked up fingers. It’s not fair we have to trust others to be able to do blood sugar tests, make sure she eats a certain amount of carbs and judge how active she can be. It’s not fair we have to join new Facebook groups and read how devastating this disease really is. It’s not fair our family members have to practice giving each other needles and write out emergency plans in case they are watching the kids. It’s not fair I’m finding little specks of blood marks all over the walls or Pip’s clothes because despite putting pressure on her pokes, it still sometimes flows. It’s not fair our lives are restricted in these small windows between insulin injections and meal times. It’s not fair we’re reading other parents haven’t slept through the night in years, that their child attempted suicide by over-dosing on insulin. It’s not fair my son has been raised to look out for his sister and feels the need to let her sit on his lap the first day of school cause she has “diabeeetes.” It’s not fair we have this huge, heavy cloud threaten to complicate the life of our daughter.

Type 1 diabetes just isn’t fair. It’s hard and such a bloody roller coaster ride. And as much as I’m crying in my pantry, on high alert and feeling the weight of her entire life on my shoulders, I can feel a fight somewhere deep within me brewing. I know I need to fight for her, for our family and for others going through this. 

So, bear with me friends. Don’t call me amazing or a warrior momma, ’cause I’m not. I’m just trying to survive it all. I’m trying to survive the emotions of sending my little girl off to kindergarten. I’m trying to survive the fear that at times seems to choke me. And I’m trying to rise up eventually, swinging for a cure, for help, for something to create change.

Follow this journey on Happy Soul Project.

We want to hear your story. Become a Mighty contributor here.

Catch Tara’s Live Q&A Video on Down Syndrome on The Mighty!