Coping & Thriving as a Parent of a Child with Type One Diabetes

I had no idea what that meant. They were sending us to the hospital and I thought we would be there for a couple of hours.  

As we were leaving the doctors office, he told us to stop at home and pack a bag because we would be at the hospital for a few days. I was shocked but didn’t show it.  

Matt (my husband) was traveling back from a business trip and didn’t know anything yet.  

By the time we got to the emergency room, Simon was feeling lightheaded. His blood sugar was 530. I had no idea what that meant. They asked him if he knew where he was. I found out that his blood sugar should be between 80 and 150. 

He was scared and dazed. Isaak (my 7-year-old) was paying attention to everything. Matt arrived later that night. 

Simon and I spent the next 4 days at the hospital. Once they got him on insulin and his blood sugar levels were safer they started teaching all of us about diabetes and how to handle it.  

Matt and I learned that Simon’s pancreas has stopped producing insulin which is a hormone needed to allow sugar to enter cells to produce energy.  

From there we learned how to use syringes and vials. Make calculations of synthetic insulin doses based on blood sugar and counting carbs in food. We practiced on a Type 1 teddy bear and then had to practice on Simon. 

We stayed positive and really appreciated the support of Phoenix Children’s Hospital. 

I am grateful for the spiritual practice because it saved me in the hospital. I prayed, I asked angels to watch over Simon, I used breathing exercises for energy, yoga stretches to release stress, asked guides to lead us forward with calm and ease, and so on.  

Once we got home our lives became filled with shots, finger pricks, keeping insulin at the right temperature, monitoring blood sugar, and counting carbs. I was pulling out syringes in parking lots, bathrooms, theaters, and cars.

It was our new normal that also came with comforting both Simon & Isaak during this time. 

 We have progressed to insulin pens & now insulin pumps. We often have to get up multiple times a night to either bring his blood sugar levels up or bring them down. 

We try to make things seem casual & normal. Even though our lives are drastically different than they were a year ago.  

Simon can’t eat whenever he wants. He can’t snack at parties or not finish his meals. He misses recess sometimes because his blood sugar is low. I have to stay at birthday parties to make sure he gets the right dose for the pizza & cake but I do try to leave for part of it to give him the freedom he deserves.  

They say that parents of Type One Diabetes children experience PTSD. I can now agree that that is true. I will admit that my and Matt’s health has gone downhill a bit in the last year.  

We thought we would make drastic changes to our diet at first but quickly realized that just managing the diabetes was all we could manage while remaining good parents & supportive of each other. 

We see stories of children dying due to complications to Type One & it frightens us. We stay really positive for Simon.  

We also give him the space to express that he can be mad at his diagnosis. We know that it is not healthy for him to just have to accept it. It is okay to get angry & get sad.  

He cries sometimes when we have to change his pump or prick his fingers in the middle of the night.  

Overall, Matt & I have learned so much from him. He has been our teacher & our guide this year. 

He expresses his anger & sadness & then moves on. He is a happy kid who loves life & wants to be an inventor when he grows up. 

I cried for the first time about this over the weekend at a spiritual retreat. I also allowed myself to get angry. It was very healing. I am crying as I write this. Matt has probably not done either yet & that is okay. We all process in different ways.  

Type One Diabetes can’t be managed by diet alone. People with Type One Diabetes cannot live without insulin.  

Simon wakes up in the morning & has to calibrate is Blood Sugar Monitor (which is attached to his arm and changed weekly) by pricking his finger for blood. 

Then he decides on breakfast & we have to count the carbs. He then enters the carbs & his current blood sugar into his insulin pump which is attached to his body & reattached 2 to 3 times a week.  

We keep an eye on his blood sugar and make any corrections if it is high. If he goes low, he has to take a break and drink juice then wait 15 minutes to see if it gets back into range. If not, he drinks more & then waits again.  

Lunch, dinner, & snacks are all counted & entered into his pump so it will deliver the right amount of insulin. This continues on through the night. 

Sometimes we feel like we do everything right and end up all night trying to get him where he should be. There is no such thing as “doing it right” with diabetes. So often there is no rhyme or reason. 

The one thing it is is constant.  

Because if this, my priorities have changed a lot this year. So many things that I thought mattered more, no longer do.  

I shut out the world more than I used to and it feels good.  

I have tried not to complain because as a parent you don’t want your child to feel like they are a problem in your life.  

I wanted to share this so you know what Simon is going through. So you know what I am going through. So you know what others with Type One Diabetes are going through.  

We are learning & getting better at having other people watch him so we can go out.  

I also want you to know that we are doing great. We are celebrating one year of managing this disease this week with tons of fun activities. 

Of course, I don’t want to leave Isaak out. We still don’t quite understand how this is affecting him but we hope that it will make him a compassionate human being. Simon is his best friend in the universe. We try to be patient & loving.  

I feel so blessed to have my sweet little family. I am also grateful for all of the family & friends & followers that have supported us in so many beautiful ways this last year.

Sending you all love and grateful you are on this journey with me!

xo,

Kerry