A Letter to Moms and Dads of Newly Diagnosed Type 1 Diabetics

Dear friend,

I’m not that far from where you are now… perhaps you are wondering how you will ever manage, how life will ever feel “normal” again, how you’ll survive, and more importantly, how you will ensure your child survives. Perhaps you look at your son or daughter and think it is so strange that he/she is diabetic. Perhaps it feels wrong, like you are somehow living someone else’s life.

I know what it is like to feel overwhelmed, grief-stricken… shattered. I remember those truly sleepless nights. More than anything, I remember the overwhelming desire to make things right and okay for my little girl and the heartbreak that I still experience at times because I can’t. I understand what you are going through in a way I wish I didn’t.

Sometimes I wonder, if I could go back and have a conversation with myself, what would I tell myself a day, a week, a month after diagnosis? What do I wish I’d known back then? What advice and encouragement has really been crucial? I am far from an expert with only a little over a year under my belt, but here is what I came up with having walked a little further down the path that you’re on:

1. The beginning part is the hardest.

There just isn’t any way to sugarcoat it. The beginning is rough. You likely won’t get a lot of sleep. You will worry, and fret, and panic. There may be weeks or even longer that the insulin dosages are not yet right, and diabetes feels like a rollercoaster. If your child was in DKA at diagnosis, a full restoration of energy and health might take as long as a month. He/she may be experiencing headaches or stomach aches from high blood sugars, and lows can feel daunting and terrifying for your child and you. I wish more than anything that I had some words of wisdom or encouragement that would actually make those first few weeks or months better, but the truth is you just have to get through it. The only encouragement I really have is… you will get through it, and life will get better, so much better. Hold on to that hope in those moment when you wonder how this can be your new life; it isn’t. Diabetes is here to stay, but it will morph into something that is still hard at times, but more manageable.

2. Embrace the technology.

We were encouraged to ease into our new life, adding more changes slowly. Ada had to adapt to her new reality of needing shots daily and no longer having the freedom to eat without a little forethought and planning. Despite this, Aaron and I felt strongly that knowledge is power and were especially eager for a continuous glucose monitor (cgm) for that reason. The Dexcom, once we were able to get one, was amazing. We slept well knowing the Dexcom would alarm if she went low overnight. Through the Dexcom, Aaron and I have learned so much: how different foods affect her blood sugar, what the optimal prebolus is for various types of foods, which foods need a little more or less insulin, etc. As a result, we now have much better control, and so much more confidence in our decisions with the Dexcom data to back it. The pump has been another worthwhile change, and each device ultimately led to more freedom for Ada and our family as a whole. It can be intimidating, but rest assured that the devices are simple to use. The technology is always getting better, allowing type 1 diabetics to lead much more normal lives.

3. Practice self care.

As I mentioned above, diabetes is especially rough in the beginning. There is such a steep learning curve, and honestly, type 1 diabetes can be all-consuming in those initial first few months after diagnosis. During the first month or so, there was hardly a moment that I thought of anything else. However, it didn’t take long before the lack of sleep and obsessive research began to take its toll. I had to make a conscious decision to read something for fun, exercise, and choose to not look at the Dexcom graph while running errands, knowing Aaron was taking excellent care of her. I promise you, diabetes care will not always consume your thoughts, but even in the beginning, it is important to give yourself breaks and take care of your mental and physical health.

4. Find your tribe.

For me, this happened in a lot of different ways. I almost immediately joined a facebook group for parents of type 1 diabetics, which was a big help for very practical information. Not long after that, I realized that it would be very beneficial to have some local contacts and support as well, so once again I went on facebook, this time to my community page asking if there were other T1d moms I could connect with. Through that post, I met five or so moms with type 1 kids. Ada was able to meet other kids like her. She was able to see their pumps and ask them questions which normalized diabetes a bit for her and bolstered her confidence. Through that same facebook post, I also met a babysitter with type 1 diabetes, thus date night was reinstated (hello, self care!) Despite these wonderful new connections, the best support has still come from the friends and family that have been there for me for years. Lean into those people that truly love you and your family, that will let you cry or vent, and that will drop everything in a moment’s notice to lend a hand. The friends I thank God for the most are the ones that understand what I’m going through not because they’ve lived it themselves, but because they are beside me every step of the way. Treasure those friends, and be that type of friend as well.

5. The future is bright.

Not everyone’s diagnosis is as traumatic as Ada’s, but she was terribly ill by the time we figured out what was wrong. And looking back, we can see indicators of a silent illness years prior to diagnosis. Then one day barely a month after diagnosis, she was successfully doing gymnastics tricks that she had tried for over a year to do but couldn’t muster the strength. I realized in that moment that she was stronger and healthier than she had been in years. If your child went for any significant amount of time undiagnosed, you’ve likely seen diabetes steal their health, energy, or even joy. But there will be a moment, and probably soon, when you will look at your t1d and know that you have your child back. Diabetes teaches our kids to be empathetic, to be resilient, to be strong. We are blessed to live in a time when the treatments and technology is changing rapidly. There will be hard days, but there will be much more joy and normalcy. Type 1 diabetics can live long lives, have children and grandchildren and chase their dreams. In some ways, our kids will have to grow up fast, but on the other hand, they will be even more amazing individuals for what diabetes has taught them.

6. You are not alone.

As we have adjusted somewhat to a life with diabetes in the mix, we can now reflect on the initial hardship with some clarity. Looking back, it felt like what David spoke of when he said, “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me” (Ps. 23:4, ESV) In hindsight, Ada was days or weeks away from death when she was diagnosed. Even after diagnosis, every low felt like a potential emergency. It felt like we were walking through “the shadow of death.” Having passed through that valley into the light, I feel compelled to look back and yell to those still walking through the valley, “Look beside you! You are not alone; Jesus is with you!” He is right there walking with you; you do not have to carry your burden alone, nor are you caring for your child alone. God loves and cares for your child as a loving father. Rest in that.

I hope you have found some small morsel of encouragement through my words. Let me say again, you are not alone. You have my prayers, and I am here to answer questions if I am able. One day, one high, one low at a time, you can do this.

With love,

Jill