Sunday, March 18, 2012

10 Years Ago Today...

Test strips, lancets, glucometer, insulin, Sure-T infusion...diabetic paraphernalia
The butter section of the fridg, holding the latest supply of insulin...
The insulin pump, the Paradigm from Medtronic...a wonder of modern technology...

Edward was diagnosed with Type 1 diabetes. We were in New York visiting Mom and that Sunday morning Edward woke up w/ what we thought was a stomach bug. His breath was 'fruity' and he seemed really uncomfortable. We decided to high tail it out of the City and get back to Providence quickly. He was curled up in the back seat the entire way. The next morning, it was snowing. He still didn't feel well and went to take a shower. It was then that we realized that w/in those 24 hours something terrible had happened. He was literally skeletal (as he said, 'I looked like a Holocaust survivor') and after his shower just curled back up. We called his pediatrician and raced him over there. Jimmy had to carry him. He was still just a little boy, only 12 1/2 and in 7th grade. Within 5 minutes of his visit w/ his doctor, he came in and told us, 'Edward has diabetes'. (Little did we know at the time, that his son also had Type 1). Our first thought was 'Well, it's not cancer, we can deal with this'. He was rushed over to Hasbro Children's Hospital, just a few minutes away. He was seen almost immediately, as he was in a crisis situation known as ketoacidosis. 'Ketoacidosis (key-toe-ass-i-DOE-sis) is a serious condition that can lead to diabetic coma (passing out for a long time) or even death. Ketones are acids that build up in the blood and appear in the urine when your body doesn't have enough insulin. They are a warning sign that your diabetes is out of control or that you are getting sick. High levels of ketones can poison the body.' His blood glucose levels were off the charts high. As soon as they got an I.V. in him and started giving him insulin, he looked better. But, he wound up in intensive care for the next 24 hours and spent the rest of the week in the hospital. Diabetes 101 had just begun and life had officially changed on a dime.

We never, in a million years, could have imagined exactly how Edward's life would change, and as parents, ours as well. Over the past 10 years he has taken thousands of shots of insulin, he has been in intensive care twice with a stomach virus, which left him terribly dehydrated, he has been to Camp Joslin for diabetes, as a camper and then as a counselor. Eighth grade was a total loss, as we were all still learning about these disease. Very difficult! He has gone through high school and 4 years of college, he has made the switch over to the insulin pump. He has dealt with 'feeling different', having to go to the school nurse every day before lunch in high school to test and record his blood sugars, and he has dealt with taking care of himself for the 4 years he was away at college. His friends were very protective...(you know who you are!!) As parents, bringing him home from Hasbro was like having a new born. We had to start over. We had to count carbs, begin really reading labels on food, and monitor every piece of food which went in his mouth (at least as far as we could). We had to keep records (books upon books upon books) of how much insulin he was taking everyday, 4 or 5 times a day, there were formulas and ratios which had to be calculated. When he made the switch over to the insulin pump, he was 16. Thankfully, he was able to become more independent. Someone once said something I will never forget. When a diabetic is taking injections, the whole family has diabetes, when he or she goes on the pump, they re-gain their independence. The pump is a wonder of modern technology and he is very blessed, if you will, to be living in such a time as this. He is a young man now, no longer a little boy.

Jimmy and I have met the most wonderful and dedicated families through our involvement with JDRF and have joined with them in their fund raising and advocacy efforts for research to find a cure. I have written about this numerous times on my blog. But, today is 10 years, a decade, since our little boy was diagnosed with this disease. So, Jimmy and I honor him. We think he is extraordinary and courageous and we love him so much.
Here's to you, Edward!!

Post Script: I have received wonderful e-mails and comments from this post, however, I was especially touched when I received an e-mail from Nurse Norman, the nurse @ Edward's high school. I don't know what we would have done w/out her support and friendship for the 4 years Edward was there. Priceless.

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