Whitney's daughter was diagnosed with type 1 diabetes over two years ago. She says sharing her story has "helped me with my own feelings of having a child with diabetes, and I hope and pray my stories will also help other new moms and dads going through this." Read Whitney's letter to the parents of kids with type 1 diabetes (T1D):
Two years, one month, and 18 days and I still remember that day like it was yesterday.
All the doctors, nurses, and blood draws—the hospital room, the overwhelming amount of information being thrown at us, and that first whiff of synthetic insulin. That’s a smell you can never forget.
The wave of emotions I felt that day: fear, anger, frustration, confusion, sadness. My child was just diagnosed with a life-altering, life-threatening disease and there is no cure.
You’re only in that hospital room for a short time, you’re given way too much information on what your life will look like now, and then you’re thrown back into the real world. In that moment you have no choice but to be strong. You walk out of the hospital holding your child questioning how you are going to take care of them, how you will learn everything you need to know. You’ll second guess everything. You have no choice but to leave all those emotions behind with your previous life and put your head down and survive—literally. You are now your child’s pancreas. You now have to make small decisions all day, every day to keep your child alive. Decisions that will make or break his/her health. One innocent mistake can cost your child their life.
That’s a lot of pressure to carry around with you as their mother, all the time. It’s easy to understand why we feel the need to check our emotions at the door. We don’t have time to feel; we have to focus.
The truth is, though, if you don’t allow yourself to feel all the emotions, this disease will break you.
This disease will make you question yourself, every day. One thing that works well for your child today, might not work for them tomorrow. It’s frustrating, really. You can only hold it all in for so long before you crack, trust me. So, I’ve come to the conclusion that I needed to stop trying to pretend I’m strong all the time. I’m not and I shouldn’t have to be. This disease is exhausting—physically, emotionally, mentally, and spiritually. I needed/need to take the time to feel all the feels.
It’s OK to be scared. I worry constantly about her life. Will she wake up tomorrow morning? Can I trust the daycare, other family members, the nurse at school to give her the proper care she needs? Will she continue to be responsible with her own care when she’s a teenager? When she’s in college? I’m scared my girl is going to die and that’s our everyday reality.
It’s OK to be angry. I’m pissed. I’m so stinking mad that this is her life. It’s not fair. Her wild, carefree childhood innocence was robbed of her and there’s absolutely nothing that makes that OK.
It’s OK to be frustrated. Just like everything else in life, diabetes doesn’t always go as planned. It doesn’t play fair. Insulin pumps malfunction, continuous glucose monitors (CGM) won’t connect, some lows just won’t come up and some highs just won’t come down. Punching diabetes in the face sounds pretty good sometimes.
It’s OK to ask, “Why?” even if there is no answer. We all want to know why. Why MY child? WHY did this happen?
It’s OK to feel sad. This disease is terrible. If it doesn’t make you want to cry, then I don’t know what will. All of the weight they carry, all of the daily struggles, all of the ways life is and will always be different for them. It’s heartbreaking, really. Take a minute and truly feel that. Cry it out. There’s been many times I’ve cried and screamed, many nights I’ve cuddled my baby and silently cried. Many moments that my daughter and I have cried together. Many days my daughter has been so frustrated with diabetes, she’s taken out on me.
These are all stages and emotions of grief and loss. If we had lost a physical presence in our life no one would question our display of these emotions. Unfortunately, though, our loss is invisible to most and we’re expected to just be strong and move on.
The truth is, though, we’re grieving.
Grieving the loss of a previous life. The loss of restful nights. The loss of carefree childhood. The loss of normal. It’s a loss we wake up to and face again and again and again every day and because of that, you have to allow yourself to grieve. All of those emotions will continue to creep in for the rest of your life, their life, because there is no cure.
I’m not saying it gets easier, because honestly, it hasn’t gotten any easier today than it was the day my daughter was diagnosed. How could it get any easier? We are talking about our child dealing with this for the rest of their life. That’s tough. However, you learn, you do the research, you talk to doctors, nurses, other type 1 (T1) moms, and somehow you manage. But easier? Absolutely not.
In the end, it’s the act of feeling, acknowledging, and owning all of these emotions that make you, as a mother, strong.
It teaches your T1 that being strong is so much more than putting a smile on your face and pushing through the day. It’s teaching them to own their story. It’s showing them it’s OK to admit you need help sometimes. They don’t have to shoulder this burden alone. Being able to carry all of it, feel all of it, share all of it; that’s true strength. That’s the true story of the everyday life for a mom with a T1.
Keep pushing forward, mama. You’ll look back and you’ll realize just how far you and your child have come. You’ll cry because at one point you honestly didn’t think you were going to be able to push through. But looking back now, seeing all the shots you had no choice but to give your child, all the pump site changes, all the CGM sensors you’ve rotated on your little child’s body... you’ll truly see how much you and she have come, how strong the both of you are.
For that, you will be grateful.
A Fellow T1 Mama
Do you have a story to tell about your experience with diabetes? Share it with us here.