5 Lessons: Parenting a Child with Type 1 Diabetes

Welcome! If you or someone you love has Type 1 Diabetes, then you will recognize many of the things I talk about when parenting a child with Type 1 Diabetes. A big part of the struggle to keeping your bearings dealing with this or any other chronic disease is the feeling of being alone in it. Knowing that you are not alone and that others feel similarly is in itself encouraging. Please read to the end and be uplifted.

I vividly remember getting the call from the doctor’s office directing me to immediately take our son to the ER without delay. The 5 frenzied days we spent at the hospital with my husband and I cramming an entire book about taking care of Type 1 Diabetes into our panicked minds. The twice daily teaching lessons. The multiple I.V.’s and careful 2 nurse cross-checks for insulin injections. The nurse telling me that insulin is one of the most dangerous medicines in existence.

My eyes tear up just writing this. The glucagon emergency pen was the last straw in the panic scale and I remember hyperventilating when the instructor opened the red case. As we were discharged and sent home to begin this new way of life, we learned some new crash lessons very quickly:

#1: A diabetes diagnosis will stretch your faith

• Each night, we would literally pray over our son as he was sleeping for God to protect and bring our son through the night.
• The “honeymoon” phase of Type 1 Diabetes is the slow gradual sputtering to a stop of the pancreas putting out insulin. It can last several months and sometimes up to a year for this to complete.
• This phase is hard, tricky, unpredictable, and scary. My husband and I found that we were needing to rely on the promises of God and what we knew of the nature of God and His purposes in a different way than before.
• By grappling with the “why” and ultimately shifting to the “how He may use this” is a strengthening exercise of our faith and trust. If the apostle Paul himself dealt with a “thorn in his flesh”, how do we merit being untouched by unpleasant things?
• Nothing completely rends a parent’s heart more then to see their child’s face the moment when the shoe falls and they realize for the first time that they have to take the syringes home with them from the hospital and use them every single day for the rest of their lives. That crestfallen look is something no parent ever forgets.

#2: A diabetes diagnosis will bring you to 5 stages of grief

• Being diagnosed with Type 1 Diabetes or other disease ushers in the 5 stages of grief. As with most chronic disease diagnosis, we were not immune to this fact.
• In our own unique fashions, seeing our son travel through these stages at the same time as us gave each of us some unique perspectives and tidbits of wisdom.
• Type 1 Diabetes is not just for our child, but is truly a family affair that changed all of us. There is an even deeper sense of bonding between all of us and the stages of grief do not last forever. The pressing need to get on with managing this disease helps to speed up the grief process because you’re not afforded time to linger in it. You just have to get on with it.

#3: You will be hit with lack of awareness

• There is a deep lack of awareness in general of those we encounter in the world as to the reality of what it is to be a Type 1 Diabetic or the parent of a child with it. I was one of them with an innocent lack of knowledge before this all happened and it has changed my entire view and compassion for others with chronic illness. Here are common misconceptions: “He looks totally fine so what’s the big deal? Are you sure you’re not helicopter parenting?” is a frequent facial expression on other people that you can completely see cross their face.
• What people don’t see is the 2 years of sleeping on the couch, 1 a.m. blood sugar checks, sleepless nights, malfunctioning sensors, low and high blood sugars that are discreetly taken care of and managed out of view, perpetual dogged calls to insurance, order mishaps for supplies, calls for prescriptions and pre-authorizations.
• The dark side of the pharma-world. Our family remembers the episode in the kitchen of “losing it” and cussing a blue streak from the constant struggle of greedy price fixing and unnecessary pharma control while the kids are outside playing (thank goodness).
• Words that have never crossed my lips before– *gasp*. It took 3 years of practice to calmly and kindly respond to the types of ignorant questions I am asked….a calm response of “Why no, we can’t make it go away by making better food choices or eating more cinnamon.”

#4: The sun is still shining

• As we forged ahead, the honeymoon phase ended and we arrived at the maintenance phase. We have graduated to seeing the nurse or physician assistant at appointments instead of the overseeing endocrinologist.
• There are also those we have met and know that really care and really want to learn which is so uplifting and kind.
• We have and will always be learning the tips and tricks to managing blood sugars and events but there but at the same time there are challenges that have been “conquered” and celebrated. For example: how to “do” a water park, how to successfully eat pizza, leaving our son at a birthday party or at his friends house, how to do a snow hike (took 100g of carbs), how to manage a cold, handing over the “reins” and seeing our son make critical management choices, etc.
• The routine has set in and we now are seeing that the sun is still shining. No, things can’t be done the same way as everyone else, but they can be done. Life is possible and full of promise again.

#5: You will get to see the silver lining

Type 1 Diabetes is thought of as a negative diagnosis but there are beautiful things that come from it:

• As mentioned before, there is a better sense of compassion and empathy for others that is gained.
• My son was immediately thrust into a role of responsibility older than his years which makes him more serious and a bit more wizened.
• Knowing that God has allowed this to be a part of our lives makes us more contemplative about the events He may use this in. We know that our son immediately can and encourager to other newly diagnosed Type 1 Diabetics because he knows, really knows, what it’s like.
• There is an appreciation for the time we have on this earth. There are incredible blessings we have been given by living where we do and the resources and tools that are available. Just one generation ago, the management and life expectancy for a Type 1 Diabetic was vastly different.
• Type 1 Diabetes really cements in our hearts that our children are really God’s and that we are just borrowing them for awhile. As a parent, the truth that it is not all on our shoulders is hard to grasp sometimes.

Lift Your Chin

With all of these older and newer thoughts, this was harder to write than I thought it would be. A big deep breathe just escaped me. I want to encourage you if you are reading this with a Type 1 Diabetic in your life- Lift your chin and notice that the sun is still shining and it’s a new day full of promise. Dealing with this diagnosis is not fruitless or pointless, you will be amazed at what you will accomplish with His help. Your faith and trust will be deepened. You, my friend, are a warrior and can be the pin in someone else’s life.

It has now been 5 years since diagnosis and we are living a norm. With the blessing of new technology and smart pumps, it allows us to go about our day with longer sessions of not thinking about Diabetes. Running, playing, joy, happiness are all there. The “sleeping on the couch” sessions are rare these days and our son has taken over the reigns of knowing his own body and what he needs. The panic of new pump errors and alarms does not rattle like before. You too will get there. Be patient and rely on the God who has it under control and knows how each day will play out.

A Nine Year Update (2024)

It’s now been nine years since we first started our Type 1 journey and our son is done with high school and fairly independent with his diabetes care. There are two things left that he needs an extra pair of hands for: inserting the CGM on the back of his arms and putting an infusion set on his back. There is a new CGM coming down the road shortly that will make this much easier for one person to do on themselves. The back insertion of infusion sets can be done by himself if he really needs to do it but will result in mangled stickers.

Carb counting is now intuitive and we don’t need to constantly refer to carb lists. We have experience and a plan for physically challenging events and for sick days. Replacement pumps with cracks and broken buttons is a yearly occurrance and no longer causes panic. The times that I sleep on the couch for rough nights is few and far between now and I even sleep with the bedroom door shut- amazing but true!

He fist bumps fellow Type 1 diabetics that we see in public as it’s an instant team comraderie. We ran into someone in the airport TSA line in Kauai that connected with a hi and distant high-five as they passed by when they recognized his pump. It’s always encouraging to him and to the other person.

Want to see what we use to make life easier?

You can watch our video on the six items we use on a daily basis to make infusion sets stay in better, travel more organized, and daily kit easier to carry:

Some helpful support sites:

• JDRF
• Insulin Nation– newsletter on what is happening in the news for all things Type 1 Diabetes as well as programs and upcoming technology.
• Pink Panther Understanding Diabetes by H. Peter Chase, MD is a wonderful resource for sick day or surgery day protocols as well as other necessary information. We’ve relied on the sick day juice ratios quite bit over the years.. The simple basic version is free online.

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