Parents of children with type 1 diabetes are a powerful force in our community and often bond together for support. This brings to mind play groups and activities for school-age children.
But one very active group called Diapers and Diabetes is specifically for... you guessed it, moms and dads coping with the daily demands of caring for a baby or toddler with T1D. The group has grown to nearly 2,500 members since D-mom Cari Libysen started it nearly 10 years ago after her son Brayden was diagnosed.
Cari, who lives in New Jersey with her husband, two children and a pug, spoke recently with our social media assistant and periodic correspondent Rachel Kerstetter about her experiences, and how this group has 'grown up' to mean so much to so many.
Talking Babies with T1D, with Cari Libysen
DM) Cari, can you share your story of how diabetes came into your life?
CL) My diabetes journey truly began almost 20 years ago when my older sister, Jenny, was diagnosed at the age of 21. She’d been away at college pledging a sorority and when she came home for the summer all she could do was sleep and drink water. She told me, “Keerie,” (her nickname for me as her baby sister) “no matter how much water I drink, I’m still thirsty.“ General doctors thought she had the flu, but at a coincidental visit to her gynecologist, they found sugar in her urine.
I remember the movie Steel Magnolias and feeling incredibly scared that my sister’s life could be shortened. I remember her at the appointment staring at the orange-capped syringes, picking one up, and placing it back down again, unable to take that first plunge of the needle into her stomach. I remember offering to do the injection for her. But most of all, I simply remember her.
Jenny died just six short years after having been diagnosed with type 1. What I’ve learned about this disease and from her death is that type 1 diabetes is like a Chinese finger trap -- the more you fight it, the more stuck you will feel. I don’t know that my sister ever truly grasped her diagnosis.
She did not wake up the morning of March 29, 2004, because her liver had failed. Alcohol abuse, depression and addiction are real demons that when coupled with type 1, can be fatal. My best advice is to stay as positive and celebrate the victories and strength that can be found within this disease rather than fight and stay in a place of fear and resentment towards that which you cannot control.
But, onto the babies...
Absolutely, onto the babies. Can you tell us about becoming a D-Mom?
My son Brayden was born October 12, 2008, and he was the first grandson and great-grandson in the family. He became such an incredible source of joy and healing that my mother especially needed after the loss of her own first-born. My grandfather, who I held as he sobbed the night we learned Jenny was gone, was delighted that he and Brayden shared the same birthday.
A little over a year after Brayden was born, I had been off from work and spent the day running errands with him. We’d noticed recently that his wet diapers were HUGE. He was drinking eight bottles in eight hours and I’d changed his clothes probably five times because he was so wet.
I didn’t put the pieces together until he was sitting at our kitchen table drinking a cup of water. He finished it and said “More!” I gave him another. Gone. “More!” And another. “More!”
My heart dropped, I remembered, “Keerie, no matter how much I drink I’m still thirsty.”
Noooo. There’s no way a 1-year-old gets diabetes.
I called my pediatrician late that night who echoed similar sentiments but agreed we should bring him in on New Year’s Eve just to do a urine test to put my new mother’s mind at ease. I’d always been a mom who called at 3 am worried about prickly heat or paused breathing with my baby, so surely this was just one of those instances, right?
That morning there was a light snow falling and I contemplated skipping the appointment. I was sure my fears were unfounded, but my husband suggested we just go so I’d sleep better that night.
'We’re here for a diabetes test? On a baby? Wait for him to pee in this bag attached to his body, we’ll get you on your way'… long wait… 'There’s significant glucose in his urine, I’ve already called over to the children’s hospital, they’re expecting you. Go home and pack overnight bags, don’t wait, you need to go to the ER now!'
What a harrowing experience. How did you cope with having such a young child diagnosed with diabetes?
At diagnosis it felt like a huge mistake or a universal joke to have a 1-year-old with a disease not meant for babies. The needles were too big and there weren’t lines small enough on syringes to give him .25 units of insulin that would drop him over 100 glucose points at a time. (Yes, I believe his correction factor was 1:400 or 500!)
A toddler and this disease can be even more challenging. The terrible twos on top of a blood sugar of 27 or 450 are equally difficult in their own ways. I’d sadly leave 'Mommy and Me' classes crying with my tail between my legs with a screaming boy, and me screaming inside -- screaming because he was low. Screaming because he was high. Screaming because it felt like all the other mothers had babies on their laps who were happy singing “Ring Around the Rosy” while I was pricking his fingers for blood and sticking syringes in his backside.
When a child is diagnosed in infancy or toddlerhood, they can’t express what they’re feeling. How do parents handle that challenge?
Short answer: They don’t and it’s beyond challenging and scary on a minute-by-minute basis.
Long answer: They get creative! For us, we found fruit snacks were a favorite treat, so for lows those little fruity bunnies came out every time. I would fill up bottles of Stevia Crystal Light to always have so that he’d be accustomed to drinking things that would flush ketones if needed. Before we went anywhere in the car, I’d turn to him in his car seat and say, 'If you feel like this,' and tilt my head down letting my tongue stick out looking very much like a funny unconscious zombie, 'Tell mommy you feel low and need bunnies.'
I tried from the very start to find ways to communicate to Brayden about his diabetes as much as possible. He learned that his fruit snacks helped him feel better, when it was time for shots 'in da butt,' as he would say, and he’d play at using his glucose meter as a telephone on a pretty regular basis.
What are the most common questions or challenges new parents have when joining the group?
A question very close to my heart is: 'Will my other babies be diagnosed?' Another is, 'Should I have more children?'
Our families are just amazing and as admins, we try so hard to encourage others no matter what the question, to not judge or tell people what to do or what we think they should do but to send love and light no matter what.
Just how young are some of these kids diagnosed?
We see newly diagnosed babies at birth, 3, 6, 9, 12 to 18 or 24 months old. All of those ages are so hard for their own reasons. Having another baby after your baby was diagnosed is a HUGE step and one that I personally still work with on a daily basis.
What kinds of support and activities does the D&D group offer?
I think the most incredible support I have witnessed is that families find us online on the first or second night their babies are in the hospital. Right from day zero of diagnosis, D&D is there to embrace a new family and let them know they are not alone.
And goodness, it's such a dream of mine to mobilize D&D to more than an online presence. Our vision for the future has been to attend the CWD Friends for Life conference (held annually in Florida in July) and let the community know that D&D is there to support our littlest ones with type 1 as well as unite our youngest T1 families together. As it is the nature of our families, having many young children does prevent us from affording and making it to Florida, but it's important to have dreams, right?
How does the D&D Facebook group change parents' experiences?
Something magical I’ve started to see is that parents are finding the group while they are still in the hospital with a newly diagnosed baby. The biggest challenge I faced upon diagnosis was that I felt alone and scared and that Brayden wasn’t going to thrive having been diagnosed so young. Now that the group is nearing its 10-year “diaversary” of its own soon, it’s so incredible that newly diagnosed families DON’T have the scariest questions in their heads that I did. 'Will my baby be okay?' and 'Am I alone in this?' are no longer present in these families’ lives because of D&D.
Finally, what advice would you give to a parent of a newly diagnosed child?
You know, there’s plenty of information and advice out there now that social media and the internet is so rampant in our lives. I don’t think there’s ever too much compassion, caring, being present and providing hope to those who are needing an understanding heart. Sometimes there are things in life that cannot be fixed, and we’re not necesarily meant to fix each other. But showing our thriving D&D babies 10 years later and being a true presence in their lives as they navigate this new journey in the most positive way possible is sometimes the best thing you can do.
Thanks for all you do, Cari!