Letter to newly diagnosed families
Dear Friend,
Welcome to the family you wish you never had. The Type 1 community is special, and you won’t find a more giving group of people anywhere else. If you’re reading this, you are somewhere in the early stages of your journey into life with Type 1 Diabetes. I would like to share a few things that I wish someone had told me in the early days of my own and my daughter’s diagnosis.
It is NOT your fault. There is nothing you could have done to prevent it, and you did nothing wrong. Don’t go down that rabbit hole.
It doesn’t get easier, but you get better at it. Think of Type 1 Diabetes as a marathon. The race doesn’t get easier, it’s always 26.2 miles. But you don’t go from always taking the elevator to all of a sudden running the whole distance. It takes a lot of training over a really long time. Soon, you won’t feel as scared or overwhelmed. Tell your child that it’s just like when they were learning to read or ride a bike. It felt so hard in the beginning, but you got better at it until you didn’t have to think about how to do it.
Your child (or you) can do anything and everything you want to. You’ll figure out how to do it, with time. If you are a big pasta lover, you will figure out how your body responds to that food at particular times of the day and how to handle it. If your kid loves soccer, you will figure out how to give less insulin or eat a certain snack beforehand. You will figure out sleepovers and overnight camp if that’s important to you. If you travel a lot for work, you’ll figure out how to pack. There is nothing you can’t do now that you or your child has Type 1 Diabetes. And if you need help figuring any of those things out, there is a wonderful community of people that is more than willing to share what has or has not worked for them for pretty much any scenario you can think of.
Find your people. I strongly believe that it takes a village, and finding support is key. Find a local JDRF Chapter and request a Bag of Hope, follow people on Instagram (you can search #type1diabetes #typeonekids #t1dlookslikeme), create an account on the Beyond Type 1 app, join Facebook groups. Consider attending a local event like Children with Diabetes or TCOYD or Connected in Motion. Ask for the free resources Lilly provides. See if you can find a sitter to give you a break. Even if you don’t live near someone with Type 1 in the family, there are so many resources online to help you find people who understand exactly what you are going through. It’s never fun to be alone, so find your people. Being a part of the community makes all the difference, I promise.
Give yourself permission to be sad for yourself. You will obviously feel sad for your child and think about how your child’s life will be impacted. But give yourself permission to be sad about how your parenthood will be different now because of this chronic illness. This is your diagnosis story too, not just theirs. Diabetes is a family disease, and you are part of their village.
If at all possible, tag team. There’s no need for both parents to stay up watching the sensor graph, or get up together to test. You need your sleep and sanity, and it’s easier to work as a team. It’s ok to need a break. You aren’t meant to function as an organ 24/7, no human is. Give yourself a break, even if that’s an hour to get lost in a book and not think about Diabetes.
Don’t judge yourself by a number that will change within 5 minutes. There are over 40 variables to the number on a meter (or sensor) including growth spurts and stress. A number is just a number, and it doesn’t define you. Within reason obviously. Don’t beat yourself up if you’re 200 after (or before) a meal. You and your child are more than a number and it’s ok to be “out of range".
You don’t need to figure everything out. We to this day, don’t know how to bolus for cereal. It isn’t important enough. We do know how to bolus for ice cream, and handle swim lessons without sensor data, and naan and all the things that we thought were worth the effort. You decide what is worth taking the time to figure out how to handle on a regular basis. We still let her eat cereal the rare times she asks for it and don’t beat ourselves up over the spike afterwards.
Mental health is just as important as staying in range. Try to think about what your child (or you) is used to, and try to create some semblance of normalcy. And try to give your child some autonomy over as much as possible, whether that’s where their next shot is going to be, giving them a time frame in which to choose to get their shot/site change, how to decorate their robot parts, allowing them to choose a mode of distraction for the next poke. Maybe even a few lower carb options when they are really high. Feeling like you have control over something makes a difference, especially to a child who is already feeling out of control of their own body. Therapy is important: take yourself and/or your child if they are old enough. Or find a Wellness Coach that specializes in Type 1 so they can help you sort through the mental load.
There is nothing wrong with bribery, especially in the beginning. We had a difficult time with site changes for awhile, and had a good friend donate some smaller figurines and toys that her daughter had just outgrown. For every site change in a new spot that felt scary, Aiyla got to pick out a new little toy and watch something she chose on tv. Anything that can make a not so great thing seem like it’s not so bad. Maybe your kid is really into stickers, or video game time, or crafts. Find something that works for them.
At the end of the day, I want you to know that this diagnosis will not define you or your child. You will choose how to live with Diabetes, not the other way around.
You got this.
xoxo
Saira