Dear Mom of a T1D, you don’t have to be strong all the time.

Dear Mom of a T1D,

You don’t have to be strong all the time. I know that’s the lie we tell ourselves; the lie that society puts on us. We feel like if we’re not strong, how are we to expect our T1 to be strong? We have to show them how to be brave, right? How to persevere? Yes, this is true, but there are many other things we need to show them how to be, as well.

Our oldest son was diagnosed with Type 1 Diabetes just a month after his second birthday. I remember that day like it was yesterday. All the doctors, nurses, blood draws, hospital beds, the overwhelming amount of information being thrown at us and that first whiff of synthetic insulin. That’s a smell you never forget.

I also remember 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 have to leave all those emotions behind with your previous life, put your head down and survive; literally.  You are now your child’s pancreas. You now have to make small decisions all day, everyday 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 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.  You can only hold it all in for so long before you crack.

So, please, Mom. Stop trying to pretend you’re strong all the time. You’re not and you don’t have to be. This disease is exhausting; physically, emotionally, mentally, spiritually. You need to take the time to feel all the feels.

It’s OK to be scared. I worry constantly about his life. Will he wake up tomorrow morning? Can I trust the nurse at school to give him the proper care? Will he continue to be responsible with his own care when he’s a teenager? When he’s in college? I’m scared my son 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 his life. It’s not fair.  His wild, childhood innocence was robbed of him and there’s nothing that’s OK about that.

It’s OK to be frustrated. Just like everything else in life, diabetes doesn’t always go as planned. It’s doesn’t play fair. Insulin pumps malfunction, CGMs won’t connect, some lows just won’t come up and some high 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? We’re a little over 6 years since diagnosis and my son has really started to ask this question a lot lately.  It breaks my heart that I can’t give him an answer, but we can ask it together.

It’s OK to feel sad. This disease is devastating. 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.  Take a minute and truly feel that. Cry it out. There’s been many times I’ve sat silently and cried. Many moments recently that my son and I cry together.

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 so 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 everyday 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.

In the end, it’s the act of feeling, acknowledging and owning all of these emotions that makes you 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 whole 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.

Love,

A fellow mama of a T1D