What I Wish I’d Known When my Child was Diagnosed with Type 1 Diabetes

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Oh, the things I would tell myself if I could go back seventeen years to the time of my daughter’s Type 1 diabetes diagnosis and have a good talk with me.

That might not do me much good now, but it might do you a whole lot of good.

So here, parent/caretaker new to this life with Type 1 diabetes, is my letter back to me, helping me see what I could not then, pointing out some things that – I hope – might make this road smoother for you.

Dear Scared, Confused, Nervous, Determined Parent/Caretaker of a Child With Diabetes,

This is me, speaking to you from the future. I’ve seen you go through a lot and I’ve helped you figure some things out. I’m back to share them with you so the road through life can be smoother. I’m good that way. And Deloreans work! So, here goes:

1)    It’s okay to cry. But only for a while. Yes, you’ve been dealt a trauma that is nearly unfathomable to just about the rest of the world. Remember how you felt the first time you walked out of that pharmacy with the pile of filled prescriptions in your arms? Overwhelmed and oh-so-very-sad. But in time it’s important to move on from those tears. If you find you are still crying regularly a good six months into this, find someone to talk to. Consider a small dose of personal therapy. Because this is your new life; your “new normal.” And anything you can do to accept it and be good with it is only going to help your child do just that.

2)    The internet is only good for some stuff. Like, finding friends. And programs. And cool blogs and digital magazines to read. If you are using Google or Facebook to find out things like “what should my son’s carb ratio be,” or “how many times a night should I be checking?” do what Bob Newhart said in this skit. STOP IT. You have a medical team. They are there for you and are learning, with you, what is best for your unique child. Don’t let the good intentions of complete strangers undermine that amazing team effort. And for goodness sake, meet some people in real life. While online friendships help, nothing replaces real, face-to-face interaction.

3)    Vanquish fear. I know this is hard. Everything is new, and insulin is a scary medication. But listen: millions and millions and millions of people not only use it every day and live full and complete lives, they go to sleep every night while it is in their bodies and wake up just fine the next morning. Fear is perfectly normal. I remember being terrified of ketones when my daughter was young and new to diabetes. For some reason, I got in my head that the moment she had ketones she was near death. Finally, I confessed to our endo team (after my daughter began to absorb the fear I was so sure I was hiding from her). They educated me on why I did not need to be so very fearful and how I had the tools to fix ketones quickly. The same can go for any fears you have. Share them with your team and ask them to help you learn how to get past that fear. It might be the most loving thing you ever do for your child.

4)    Just do it. Be it a family trip, a full time job you either love or must do, an away soccer match your child wants to go to but you cannot attend, a birthday party with lots of goodies – just do it. Your team is there, again, to help you come up with a plan. And while it may not work perfectly the first time, eventually you’ll nail it. You want your child to be independent, brave and happy, right? Then always – always – ask yourself this question “What would I do without diabetes on board?” and then do that. Just do it.

5)    Do something. Not week one, maybe not even month one. But once you are settled into the daily life of diabetes (or as settled as we can be with the constant shifts and changes), find a way to make a difference. Ride your bike for research. Walk around a river to fund programs. Help a newly diagnosed family. Raise your hand to be part of a clinical trial. You need to do something for two reasons. First: because this is our community and it’s up to us to make it a better one. Less than 10 percent of the Type 1 diabetes community is actively involved in things like this. Imagine the power toward change we’d have if we each did something? It doesn’t have to be a world-record fundraiser. It just has to be something. Second, (and perhaps even more importantly) it empowers you. Volunteering, advocacy, donating, helping … it all does more for you than it even does for anyone else. Take part is making the diabetes world better and even on your worst blood glucose days, you’ll always be able to remember you are part of forward progress.

6)    Don’t talk A1C’s with your kids. Ever. Listen, before diabetes, did you take the lab sheet from your child’s annual physical and show them things on it and celebrate numbers? Of course not. A young child does not even need to know what an A1C is, never mind the result of one. I wish I’d known this. Because my bragging and focusing and harping and stressing over that value seeped into my child’s very being. So from the future I tell you: don’t introduce it into your child’s life and ask your endo to share it with you privately. Use more general terms in discussing diabetes results with your child. And when they are older, they can learn it, after they’ve developed a self-esteem not tied to a lab result.

7)    Redefine “perfection.” In the beginning, there will be much focus on blood glucose ranges. You’ll stress over highs and lows; weeks will be labled “good” or “bad” based on that and sometimes almost only that. But here’s the thing: perfection does not have a number value, even on a meter. Perfection is your child smiling at the beach, despite that pump hooked on his suit. Perfection is your daughter high fiving her teammates after scoring a soccer goal, even if her blood sugar was low an hour earlier. Perfection is the delicious exhaustion after a long family ski day, no matter what the blood sugars were that day. Perfection is a life well lived, despite diabetes.

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JenniferLuminaryXionAbby BayerKateDetta Castillo Recent comment authors
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Jennifer
Jennifer

I’ve personally had T1D for 20 yrs this March. In April I just gave birth to a baby girl, and have a 5 yr old son. I just want to say this is great advice. My parents continue to be my support,  my advocates, and my cheerleaders.  I know it wasn’t easy for them, but we were brave together. I hope parents of not only diabetic children but really any child diagnosed with a chronic condition can take this general advice.

LuminaryXion
LuminaryXion

I wish I could suggest this advice for my father. Unfortunately I live in Japan- where you cannot trust the medical staff with your care. I’ve had to learn (thank Dr. Google) how to figure out my own ratio and care. Don’t believe me? Common treatment in Japan is still fixed insulin therapy… I had to be checked into a hospital for 1 week to get my insulin pump (which I had to argue for even though I’m T1) and on the first day they tried to give me enough insulin that I know would have put me into hypoglycemic… Read more »

Abby Bayer

I love this, Moira. Thanks for writing it and emphasizing what a huge part in the diagnosis and first year that the medical team should be. We are all here because we want to be, and no question is too small or too stupid. We want our families to succeed. This is an excellent post :)

Kate
Kate

Thank you for this. My daughter was diagnosed just 3 weeks ago. She is 8. We were rushed to the hospital for 2 days and I felt like my world had been turned on it’s side. I feel like I’m already falling into a few of the suggestions you’ve given and I appreciate the affirmation that I’m doing the right thing. She is actually going to diabetes camp next week!!! All good things

Thanks for the encouragement. 

Detta Castillo
Detta Castillo

As a mother whose 10 year old was diagnosed in June of this year, I LOVE IT! Thanks <3 And I hope your child has realized how amazing they are, no matter what their A1C is at the moment. ;-) 

veronica
veronica

 wish i had learned not to blame myself. Lows happen. Not your fault highs happen.doesnt mean you miscounted

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