I Save my Daughter's Life Everyday
When I picked up Clarice from school one day last week, her teacher reminded me, "Don't forget, Clarice needs more juice boxes and candy."
"Oh, yes, I’ll bring some with her in the morning. Thank you!"
In the early morning hours of that same day, Clarice's low blood sugar alarm went off. I hear her yell from her bed, "Momma! I'm low!”
"It's okay. I'm coming; I'm bringing you some M&Ms." I crawl out of bed, realize the time, and grab a bag of M&Ms and lay with her in her bed until she's done eating them. She also has a large bag of Skittles sitting next to her bed, so we pop a few of those as well.
What would happen if I did not give her candy or some form of sugar when her blood sugar is low? In this order: dizziness, cold sweats, fatigue, hallucinations, fainting, seizure or convulsions, brain damage, death.
That is for extreme cases. Due to the constant diligence of her teachers and my husband and myself, we have only ever gotten as bad as a little dizziness, and we are always able to catch her lows in good time.
When we first had kids, I decided I was going to be a "healthy" parent. I never kept candy or juice boxes in the house. Clarice never even tasted candy before age two. She only drank milk or water with fruit in it. She ate fruit, cheese, and crackers as snacks. Cookies, chips, and candy were saved for occasions like birthdays or holidays.
Then came the diagnosis. She was sick for so long. Type 1 Diabetes. A life of constant monitoring of blood sugar numbers. I was told that I was now required to keep sugary snacks and drinks on hand in order to save my daughter's life from time to time.
This blew my mind. You mean, the sugary items that plague our culture that I said I would never keep as a constant in my pantry NOW have to follow us everywhere, we go?!?
"Yes," the nurses and doctors explained to me. "From now on, you'll have to make sure Clarice has her T1D supplies with her EVERYWHERE she goes. So, you may want to get a little bag or backpack for her to keep with her at all times in order to carry it all."
So, in her little mini backpack, she carries a juice box and little Ziploc bag full of candy as well as a finger pricker, syringes, insulin, glucagon, and other necessary lifesaving supplies in case of an emergency.
Now, in the middle of the night, when I'm waking up to feed my daughter lifesaving candy, I am both cursing and rejoicing with this horrible disease. I HATE that I'm having to get up to feed my daughter candy or juice to save her life and that this happens on a daily basis.... but, on the flip side, if she's going to need some kind of substance that CAN save her life, at least it's candy. It's easily attainable, and she willingly eats it; in fact, she loves it.
Not only do we fight low blood sugars, but we fight high ones as well. My daughter’s suggested blood sugar range is 80-120, but according to her weekly CGM reports, she is only ever in that range 20-30% of the time. When her blood sugar gets too high, we administer insulin through her pump and wait for it to come down, which can take hours depending on the severity of the high. High blood sugars for extended periods can lead to headaches, dehydration, constant thirst and urination, organ damage, and eventually diabetic ketoacidosis (DKA), which can be deadly. Clarice was in DKA when she was diagnosed because we had NO CLUE what was wrong with her. We were ignorant to what Type 1 Diabetes was and two doctors had misdiagnosed her in the weeks leading up to our week long hospital stay during Thanksgiving 2016. She was only two years old. She nearly died.
Some may say that we are not doing a good enough job of keeping her in range. I quickly remind those people that a four-year-old’s diet is obscure at best. Along with growth spurts, hormones, and even phases of the moon, she could eat the same exact diet and portions each day, and we would still experience discrepancies in her blood sugar numbers.
My aim is to bring awareness. According to the American Diabetes Association, approximately 1.25 million American children and adults have Type 1 Diabetes, and an estimated 40,000 people will be newly diagnosed each year. People who have T1D depend on the constant flow of self-administered insulin either through pump or syringe to stay alive. Clarice wears an insulin pump. Her diagnosis was unavoidable. It was not due to poor diet or anything else that she has done. According to endocrineweb.com, the onset of Type 1 diabetes is due to environmental factors and genetic makeup. No one in my family or my husband's family has Type 1 Diabetes. So, it's understandable why her diagnosis was such a shocker.
Type 1 Diabetics MUST HAVE insulin to stay alive. Stories of people rationing their insulin have been all over the news and social media. People plagued by T1D sometimes resort to rationing their insulin due to the skyrocketing costs of the lifesaving drug. According to the Health Care Cost Institute, the annual cost of insulin per person rose from $2,900 in 2012 to $5,700 in 2016. That’s a 97% increase in just four years. I will never forget that first trip to the pharmacy after we were released from the hospital after her diagnosis. The bill for three months of supplies I would need to keep my child alive from day to day was over $800.
My little family is so lucky. My family does okay financially. My husband and I both have careers in the public education system, so we are definitely not wealthy. We are currently enrolled in insurance coverage through our school districts. $576 is deducted from my husband’s paycheck each month to cover him and our children. With our insurance and some coupons, our monthly cost of Novolog U100 is brought down to $25.00. What kills our budget is the cost of everything else. My daughter wears an insulin pump and a CGM (Continuous Glucose Monitor). The cost of those supplies run us an average of $250 per month. My daughter also sees her endocrinologist every 3 months. That bill when combining the copay and the lab fees comes out to $230. While all of those costs quickly add up, I still feel fortunate when I hear stories of other T1’s paying $400+ just for the vial of insulin.
Fortunately, with the current outcry over rising drug prices, these statistics are gaining traction. According to the Washington Post, on January 29 Senate Finance Committee Chairman Charles Grassley, R-Iowa said, “I have heard stories about people reducing their life-saving medicines, like insulin, to save money. This is unacceptable, and I intend to specifically get to the bottom of the insulin price problem.” This is so encouraging to hear for so many who measure their insulin each month just to calculate how long they can actually LIVE on what’s currently available in their home.
Our hope is that in the future, there is a cure. There isn't one yet, but doctors and scientists are VERY close. Every endocrinologist we ever spoke with believes that within the next 10 years, there will be a standard cure and that it will be available to anyone with T1 who wishes to receive it.
So, until then, we fight the good fight and I do whatever it takes to keep my child alive.