Well Being

When Your World Changes: Type 1 Diabetes

I asked my sister, Melissa, to share about her daughter Melina and her story of Type 1 Diabetes.  November is considered Type 1 Diabetes awareness month and I wanted to share her story.  It is amazing to see Melissa trust God through such a scary diagnosis.  May this testimony strengthen you for whatever you are going through, and help you to see that God is always there for you.

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I can still remember what it was like sitting in the emergency waiting room.  The atmosphere, the kids running around, the smell, the uncomfortable chairs, the chaos of sickness and urgency.

I cannot exactly recall when it started, those telltale signs of Type 1 Diabetes (T1D). I simply realized one day that she was drinking water a lot more than normal. She also had lost an incredible amount of weight.  My potty trained three-year old suddenly began wetting the bed. Heavily.

In the back of our minds, all of these things were definitely a concern. Somehow diabetes became a thought. We saw our pediatrician who sent for blood work.

The results came back almost instantly.

An experienced nurse from the pediatric office called me and told me she had informed Children’s Hospital of Philadelphia that we were on our way. I called my husband from home from work and we rushed over.

Hearing horror stories of comas and seizures because of scary numbers or untreated and undiagnosed diabetes makes me aware that our story is a very lucky one.

The doctors and nurses spoke to us a little bit, using diabetes jargon and we had no clue as to what anything stood for. We just listened and nodded along, silently hoping we’d eventually understand what any of it meant. Not really getting just how life changing this was about to be, if not already.

There are only a few times in my life that I can play out in my mind as if I were watching a movie. My entire time in the hospital, especially the first night, is one of those times. Everything I saw and smelled is crystal clear but most clear was the feeling as if my heart were gaping open, with fear, anxiety, and hurt for my child.

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Little did I know that was how I was still going to feel even a little over a year later. You never quit being scared or overwhelmed by it all. Yes, you become a bit more knowledgeable, and experience lends a hand making it a bit easier at times, but fear for your child and bone-crushing tiredness from being “on” all the time never ceases.

Will she wake up tomorrow? We do nightly checks, which are generally at 11pm and 2am. Sometimes, if her numbers are wackier than usual, we check one to two to three times (yes, really) more. But, still . . . what if at 11pm she was a decent number, but was on her way down, and of course we had no way of knowing as she had shown a good number when we checked! By 2am it could be too late. We stay as vigilant as possible, but diabetes definitely defines a new type of “on”, an all consuming, anxiety ridden, exhausted one.

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The simplest way to describe how I was feeling that night would be “struck”: I was struck with shock and fear. Struck with a numbness of incomprehension. Struck with fretting, constant fretting. For her health, our wallets. I was struck dumb. I still could not grasp what all of this meant, but I knew things were forever changed.

After the initial finger pricks and shots that first night, tearfully done, my three-year-old sweet pea turned to me and resolutely stated, “I will be brave.” as she nodded her head. Just like that. She is the bravest person I know and I like to declare that I gave birth to my hero.

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Coming home was hard. It was so new and scary. That kind of scary is so different from coming home with your first newborn, when you’re not sure why they allow new parents to leave the hospital with these tiny helpless humans, because how can you be trusted with something so special and fragile?

Anxiety was in us all. Would I kill her? Would my husband and I mess up so badly that her death will be on our hands? What if we don’t catch a “low” or what if we give too much insulin?  Yes, those are real thoughts we had and still have today. We could make a mistake. We are so tired. We are so stressed. We are so busy. We might give the wrong dose without realizing it and it could have a really bad result. A deadly one. Or we may not catch a low, for whatever reason. People have woken up in the middle of the night and saw their children in the middle of a seizure from a low. This is not an “easy” disease. People who say, “At least it’s not cancer.” do not understand. There is no “better.”

I will remain forever grateful for how “easy” our diagnosis story is. There are families out there that truly have more traumatic diagnosis stories than our own. Not only that, especially considering the fact we had a newborn, it was an easy time because of family stepping in and being so willing to help. We otherwise would not have made it through.

I could feel God’s presence every moment. The fluidity of how everything was working once we got to the hospital, the kindness of everyone, and even my daughter’s easygoing personality that has made me stronger in the face of everything – He truly was with us and He still is.

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(All pictures are recent pictures. They are not ones from Melina’s hospital visit.)

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2 Comments

  • Reply Alana November 17, 2016 at 9:00 am

    Very excellent article. Explains what some parents with diabetic children go through and how difficult it can be.

  • Reply Heather November 17, 2016 at 9:44 am

    As a t1 diabetic for 27 years I can let you know that you are not alone. I got it the same time that the wall in Berlin fell and the earthquake in San Francisco. Seems a lot of upheaval at that time. My parents went through the same struggles and fears that you are going through. I now have a healthy 1 year old and I know it’s because God carried me through the tough days of diabetes. 🙂 (I also am watching to make sure he doesn’t get it.) Also, I recently got a CGM about 2 years ago and it changed the way I view my diabetes. My husband loves it way more than me even. Anyways, wanted to let you know that you aren’t alone. ?

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