Our 16 months old daughter Tara is a God given gift that came to us after 11 years of waiting. An active, curious and bright baby with enough "sass" to make even a stranger shake their head and hide a smile.
It was just terrifying to hear the words “Your daughter has Type 1 diabetes” on February 18th 2014, a little less than one year into my daughter's life.
This means that her body cannot make the insulin that it needs to turn her food into energy for her body. Her father and I must give her insulin injections, shots, multiple times a day. In the 5 ½ months since Tara was diagnosed she has had a bit over 530 injections. You can either work with this disease or say how much you hate it and get stuck in life’s sick version of a chinese finger trap and find yourself on the losing end no matter how hard you fight.I just can’t do it.
My daughter is too magical, too amazing. I don't hate or curse at the bruises all over her bottom and arms from the needles or the fact that by bedtime, I want to go to sleep, not stay awake until midnight, sometimes until 3 a.m., sometimes all night so that I know my child is safe. It’s a place I’ve had to work really, really hard to get to in my mind. Thankfully, there is an opportunity to make this easier on her as we are looking into getting an insulin pump that would administer her insulin, replacing the shots as we would only have to change her infusion site every three days. It would be a godsend!
However, even with the pump we would have to check her blood sugar 12-18 times per day. This means pricking her tiny little finger tips with a needle and squeezing blood out to apply to a test strip. These readings let us know if her blood sugar is high or low, how much insulin to give her, or if she needs something sweet or food or worse, an emergency injection called Glucagon to raise her blood sugar. Just like the pump would make administering her insulin more accurate and easier on her and so much more effective as well - the manufacturers provide a device called a Continuous Glucose Monitor.
This "CGM" has a fiber-optic sensor that sticks under the skin and has to be changed in a week. The sensor takes a reading of her blood sugar frequently and every 5 minutes it displays the average. Not only does the CGM give us the real time reading but it plots these readings out so that we would be able to see if her sugar is rising or falling quickly, allowing us to catch any life-threatening lows and stop dangerously high blood sugars. However, the insurance will not cover any of this. It's not a required item, even though it is considered the standard of care all over the world. A CGM alone costs almost $1600 and the monthly supplies average about $350 let alone the pump which costs almost $ 6000 along with $ 400 for monthly supplies. This is way beyond what our family can afford at the time. Thankfully, we have wonderful friends, friends who are going above and beyond, creating fundraisers to help raise the money to purchase Tara what she needs, and what we need to keep her as healthy as we can.
Thank you so much for your consideration and generosity