Four and a half years ago, the Hell we call Diabetes entered our life. Every day of the last 1667 days of my daughters life, we have pricked her finger, inserted needles into her body. I hate it. I hate that on days when normal kids have the stomach flu and get to sit home and lay down and sip on ginger ale. That's not an option for Sarah... She has to keep her blood sugar above 80. When you're diabetic, you do not just get to lay there, I have to force juice, soda, anything into my daughter to bring her blood sugar up into a safe range. If that doesn't work, or she develops large ketones, it's a trip to the Emergency room. Not just any emergency room, it's a trip all the way across the city..almost 60 miles one way, to the local children's hospital.
The biggest change in our life was when we got the pump 1 year after diagnosis. Sarah no longer had to have 8-10 shots a day. This made our life easier and we were able to change her basal rates (amount of insulin for the different times of day instead of having the long lasting insulin which we could not adjust by the hour.
At year 2 1/2 we purchased a Diabetic Alert Dog. This dog is our lifesaver each day she alerts to Sarahs' high and low blood sugars. More than once Candy (Hey, Sarah was 4 when we got her, and She is a Chocolate Lab..So it was only expected that Candy would be a great name) has saved Sarah's life. Candy doesn't yet go to school with Sarah as she is only 6 and the other kids in the class would be greatly distracted by Candy. We are hoping by 3rd grade, Candy will be able to go and help Sarah's school nurse and teacher to take care of her. Candy came from Tattle Tail Alert dog's in Salt Lake City Utah. Candy's Breeder is a Type 1 Diabetic herself and has been one of the most awesome people I have met when it comes to dealing with Type 1 Diabetes. The "Family" we have gained from online groups has seriously helped in dealing with this disease that is invisible to most of those around us.
Just months ago, we finally were able to afford the Continuous Glucose Monitor aka Dexcom. This is a beautiful, awesome tool, however is very expensive. and I hate it and love it. It shows when Sarah's blood sugars are going up by a system of arrows... They either point up at an angle, two up mean she's climbing, two down mean she's going down fast. one down is going down slowly. It connects to an iPhone and then transmit to my phone, the school nurses phone, Sarah's fathers phone and a few others, in case of an emergency. Sarah's school nurse unfortunately, has been awakened at 4 AM more than once for Low's. However has always been awesome about it. I love that her nurse is so involved with her care.
The stress of diabetes is very frustrating, unfortunately there are many side effects of Diabetes, that are not medical. I personally gained 40lb's in the first 2 years after diabetes. My own health suffered (High Blood Pressure, Anxiety and Stress Migraines) as I have had to continue working full time and waking up 2-3 times per night to check Sarah's blood sugars. The CGM has helped to cut down the amount of times I get up at night but it still is not 100% accurate. My marriage has suffered, unfortunately at the time of this writing I am going through a divorce. When you feel as though you are doing 99% of the work for a diabetic, hard feelings arise..
Diabetes changes the dynamics of all relationships. There is no just up and leaving for a fun filled weekend. Every trip outside of the house is full of anxiety for me because of the need for supplies, insulin, test strips etc. Money...Oh boy. Recently I added up everything for 1 year of Diabetes Supplies. Without including the price I pay for Insurance, our yearly out of pocket in Co-pays, Deductibles, Blood work, prescriptions, Diabetic Alert Dog insurance, Diabetic Alert dog food/treats etc literally are around $8000 a year. That's the purchase of a small car each year almost!
Alas, Sarah is now 6, attending the first grade at an awesome school that has a full time nurse on staff (I cannot imagine Sarah going to a public school locally that does not have a nurse but one day every other week, Leaving her without a nurse is dangerous!) She is happy, healthy, funny, gregarious and so very smart. Unfortunately, we recently had a bad test result and regarding her kidneys and we are awaiting further testing to know if the high blood sugars are affecting her Kidneys at such a young age. She knows when things are rough and we just cannot afford to buy new toys, clothes or other things. Her big brother and sister sadly are jaded by this disease, they feel anger towards us as the parents that cannot afford what they used to get before this disease entered our lives 4 1/2 years ago) They are almost adults, They have had to give up some of their free time so I could pick up more hours at work, or to do more chores as their Dad and I were just too worn out from having only 24 hours in a day to get all the things done that are needed to be done.
On every shooting star, Every Dandelion that is blown on, Every lost eyelash, Every birthday candle that is blown out... I wish for a cure. Every day of my daughters short life since diagnosis I have prayed for God to help those scientists and researchers to find a cure.