I’ve had the privilege of knowing Crystal and her mom for a couple years now, since before Crystal was diagnosed with type 1. But it’s coming up on a year with diabetes now, so I have checked in with them to see what this first year of a diabetes diagnosis has been like for them both. I’m so thankful they were willing to share with you. Check out our conversation together:
DIABETES DIAGNOSIS
Q: Let’s start by talking about your diagnosis. How old were you, and what was that like?
Crystal: I was 9 years old. The diagnosis felt scary and confusing. AND overwhelming. I heard about my diagnosis from my Nana because I was at her house. She told me that Mom had just called saying that she needed me home right away to take me to the hospital. When I got home and I heard we were packing an overnight bag, and I got scared. I was wondering if I was going to be ok.
Q: What was it like as a mom to go through the diagnosis of your child?
Mom: Denial. Lots of denial. Shock. Mourning is also another emotion that I can use to label my feelings as a mom going thru the diagnosis. I was mourning the loss of a privilege that so many people have, that they don’t realize they have… a working pancreas.
I also tried to document everything I could, and I went down plenty of rabbit holes looking for answers. Then I reached out to family members: aunts, uncles, cousins… people I haven’t spoken to in years. I was trying to track down the blood line where autoimmune issues would be coming from. But I never found anything anywhere that pointed to why this was happening.
Q: What happened when you got to the hospital that night?
Mom: We went to the hospital that night and we waited for hours. There were so many kids and families in the waiting room. We ended up leaving because we were hungry, tired, and overwhelmed. Crystal had a finger poke to test her blood sugar (for the first time), and it came in at normal range. So we just left to go home and eat.
Leaving caused the ER doctor to call me, although she didn’t call for about an hour after we left. She didn’t blame me for leaving, due to the situation in the ER department, although I did get flagged for leaving against medical advice. (I will say, the quickest way to get on the phone with an ER pediatric doctor is to walk out of the ER… haha!) But we ate plain chicken and cauliflower that night, and I promised the doctors I would be back first thing in the morning. Our Pediatrician called me too, and asked very similar questions as the ER doctor. And then we returned to the ER in the morning.
THE NEXT MORNING
Q: What was it like going back the next day and meeting all the doctors and nurses?
Crystal: I don’t really remember the doctors and nurses. But I do remember we got back to the hospital super early in the morning.
Mom: It was around 5:30 or 6 am. They did do a blood test on her and we had eaten very little breakfast. Just after 6 am, a doctor came rushing thru the doors. She whisked us away up into Children’s Hospital. We walked thru lots of hallways and doors in ways that we would never remember.
Crystal: Hospitals are super big!
Mom: We went to the lab and had a blood draw. And then we waited. I remember asking what something meant and if they were sure it was diabetes. Then the same doctor came down from the diabetic clinic rounds to grab us. We completed a seven-hour crash course so the hospital would release Crystal to us, instead of admitting her. We were considered a special case since her blood sugars weren’t high at the time.
Q: Do you know anyone else with diabetes?
Crystal: Yes, I know a few other girls who have diabetes from a summer camp, and another girl from elementary school this year. That’s all that I can remember that are diabetic. And my grandpa has type 2 diabetes.
SLEEPOVERS
Q: I hear you had a sleepover this summer, Crystal! What was that like while managing diabetes there?
Crystal: Oh, it was good. All I did was tell her mom what I needed to dose for. If there was a snack, her mom would let me know 20 minutes before. That’s really all. It went well and I had fun!
Q: Mom, how do you handle being away from Crystal, maybe at school or a sleepover, while she is under someone else’s care?
I am so fortunate in this because of Crystal and who she is. Crystal understands “this causes that” and “if we do this, we can make that happen.”
For example, if Crystal is riding at 120 and the nurse calls and says she is trending down, drink a juice box… Crystal knows not to drink the juice box because it will cause her to go soaring high.
Crystal has this terrific opportunity to live in a time where diabetes can be seen with technology. Technology that we so easily have access to. She knows she can call me and I’ll come for her. She knows she can text me and I’ll answer.
SUGARPIXEL
Q: You have a SugarPixel that displays your blood sugar, right? What can you tell me about that?
Crystal: I like it! Sometimes it shows funny emojis, like the poop emoji, and that makes me laugh. It’s helpful so I don’t always have to pull out my phone or my pump to see my number. But it makes a lot of noise and is really annoying at night. The other thing it helps with is that it helps ruin my sleep and the sleep of my mama.
The SugarPixel has changed since being on multiple daily injections to being on a Tandem pump. Now if I go high, chances are I need to check my infusion spot.
SCHOOL AND DIABETES
Q: I’ve written a lot about diabetes at school on this blog website. And you’ve had a year with diabetes now, so what is school like for you?
Crystal: Currently, it is embarrassing when my pump or Dexcom beep in class. It is super embarrassing because everyone stares at me. Or if the nurse comes and gets me, that’s embarrassing too. What is good is I get candy and juice boxes if I am low!
School is different this year (5th grade versus 4th grade), and I know in middle school it will be harder. But now I can bolus sometimes at my desk before snack. For lunch, I sometimes bolus in the lunch room, sometimes before we go to lunch. It’s much different than last year, when I would need to leave class and go down to the nurse’s office. I am missing a lot less class time being on the pump now.
BLOG POSTS ABOUT SCHOOL AND DIABETES:
- School Days with Diabetes: A Mom’s Perspective
- Diabetes at School: 7 Things to Help You Prepare
- Diabetes Q&A With a School Nurse
- Diabetes at School: Q&A With a Fourth Grader
NEW EXPERIENCES DURING A YEAR WITH DIABETES
Q: And now for the most recent big event… you attended CWD Friends for Life Orlando 2023 in July this year. Fill me in on your favorite parts of that experience.
Crystal: Seeing all the people with Dexcoms and pumps and other stuff like that was awesome. It was cool to see other kids wearing them too. And I got to fly to get there with my family, so that was a cool experience.
Q: What was the CWD Orlando experience like for you, mom?
Flipping amazing! I love meeting people. I love hearing about other people and their journey (not just diabetes). It was a time in my life that the subject seemed consistent. All the people there were very different and very similar.
Have you ever played Uno? When someone lays down a card you match either the color or the number. (Let’s leave out those reverse, draw’s, etc. for this.) At the conference, it was like everyone had the same color card. It was an even playing field.
I would love to go back! After Crystal grows up, I would love to continue to go back. If she would want to volunteer there, I would support that. If they were looking for volunteers, I would do that too. As a matter of fact, I went looking at their website for a career opportunity.
WEARING A PUMP
Q: Crystal, you recently started wearing an insulin pump. What has that been like for you?
Crystal: It’s harder to wear dresses, and go swimming, and sleep at a sleepover. But otherwise it’s really good.
Q: What has been the biggest adjustment you’ve had to make as a family over the last year?
Mom: The biggest adjustment? Food. How we look at food. How I serve meals. All of that. We are still honeymooning, so I can only imagine that as Crystal continues thru her diabetes journey, she will have to eventually dose for every carb and need to be more accurate with counting carbs.
I’ll tell you right now if we miss something (carb wise) our pump will catch it, and Crystal is learning the “that’s ok” mentality. If we mess up counting something, especially fast food, we try to be better next time. We keep track on her phone in the notes app about different fast food places and what she orders and how much insulin she put in the last time. Then we can look back next time to adjust.
WISDOM FROM A YEAR WITH DIABETES
Q: I feel like having diabetes almost a year now, there’s probably something you’ve learned that we could all benefit from knowing. Do you have any tips or tricks already, Crystal?
Crystal: When I know go swimming, we wrap my Dexcom in vet tape. That’s what we did when I got to swim with the dolphins, and it works super well!
Q: Is there anything else you’d like to share with us?
Crystal: I hope you have a good support system. At first it will be scary, but you will get used to it. You will start to do braver things. Try out for new things — don’t let it hold you back.
ADVICE FOR MOMS OF KIDS WITH T1D
Q: What amazing advice from a ten year old! Thank you so much, Crystal!
So mom, what is your advice to other moms who have newly diagnosed kids with T1D?
- Your kid is watching you: Please don’t panic. Kids are so forgiving. Let them know when you are not sure or struggling.
- Teach your kid everything that you are learning, and in a way they can learn it.
- Hang on. File the FMLA. Get the Dexcom. Get thru your MDI (multiple daily injections) phase and learn how the insulin works. Then, get a Tandem pump.
- Be bold with insulin, not too bold though.
- Oh, and there is a LOT to learn about diabetes. You may find yourself learning something new when you least expect it.
A PRAYER FOR NEWLY DIAGNOSED FAMILIES
I just want to close this blog post by praying for Crystal and her mom and other newly diagnosed families. Would you join me in praying for them?
Dear God, thank you for Crystal and her mother, and thank you for their willingness to share something that is still very new and raw for them. I love that they want to take the challenges of this life and use them to encourage others. Thank you for their hearts.
God, I pray today for newly diagnosed families. Or even those that will be diagnosed shortly and don’t yet know it. I pray they would cling to you in these times of uncertainty and struggle and learning like crazy. Be near to them and comfort them as they will have unanswered or unanswerable questions. I pray for their endurance and energy levels to learn and take care of themselves well during a time that is stressful and tiring. And I pray their families and friends will rally around them with support. Thank you, Lord, for the friends and families You have provided us to help us through. In Jesus’ name. Amen.
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