Wordless Wednesday

On the precipice of his future...
pencil sketch

Edward Lilley, 3/2012

Wordless Wednesday

"OMG, this is hysterical', says Girl Whirl aka, LK

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.

So, We Spent the Day in Manitou Springs...

A Sugar Daddy could last for days..

..and days...

Smack these babies on the ground to crack the bar..remember??

'The Olive Tap'...

..the many choices for olive oil tasting...interesting!!!

"Manitou", a Native American word for "spirit", describes this beautiful mountain community. Eleven naturally carbonated mineral spring fountains, located throughout this Historic town, run free for all who wish to enjoy the healing benefits. The Ute, Cheyenne and other Native Americans considered this area sacred for the healing springs and clean mountain air.

Manitou Springs is a vibrant artisan community...as a New Yorker, my thought was that it was as if the East Village and Colorado had merged. We spent the afternoon in the Historic District where the streets are lined w/ one of a kind gift shops. There was alot of pottery, stunning photographs for days, of the mountains in extraordinary color, from all seasons, jewelry, and clothes. What struck us was 'The Olive Tap'. Similar to wine tasting, there were over 30 varieties of olive oil. You taste, sample, make your own brand, if you will. We decided, that on the next visit, we would give this a whirl. There was the 'au natural' bath and body shop. I loved it because of all the concoctions, you are presented with the basic product, but, in this store, you are able to pick and choose from the many handmade oils and fragrances to put in your product...very personal. We ate at 'The Sahara Cafe', a Mediterranean restaurant where we were pleasantly surprised at how delicious and authentic the falafel and humus plates were. We only covered a portion of this interesting place called Manitou Springs.

I could have taken alot of pictures, but I just wanted to 'take it all in' on our first visit. It's just about 1/2 hour from Colorado Springs. However, right before we were ready to leave, we walked into a store which sold handmade fudge and we quickly realized that they also were a blast from the past as they had candy from our childhood. Turkish taffy...remember??? You would smack in on the ground to break it up. It got me into big trouble once when I had braces on my teeth. Turkish taffy was most definitely off limits, but I had some anyway and pulled out an entire side of my bottom brace. I still remember how 'not happy' my orthodontist was w/ me at the time. And, of course, the Sugar Daddy, of which we all have fond memories, especially from camp. On movie night we would all go the the Social Hall, armed w/ our Sugar Daddy's in tow, knowing that it would outlast any movie...except maybe, Dr. Zhivago. So, of all the sights, here are my pics of the candy...go figure!!

Wordless Wednesday

The Baobab Tree

'The Little Prince'
Written and Illustrated by Antoine de Saint-Exupery
1943

Triple 'D'

Bacon cheeseburger w/ unbelievably delicious fries..

...and stacked, ready to be eaten...

Jimmy and Edward each received a clean plate club sticker!!

The clean plate club sticker pole...full from top to bottom..

We heard he was here for his show 'Diners, Drive-ins and Dives', other wise known simply as 'Triple D'! None other than the all too adorable and keep it real, Guy Fieri. Jimmy went last month, and today, while out and about we decided to head into downtown Colorado Springs and twist Jimmy's arm to have another amazing burger. Edward was game, more like drooling. For me, well, I was just praying there would be something on the menu that I would eat. Eggs, always safe and good at any time of the day. So, we went to King's Chef Diner. A burger 'joint' around since 1956. We know, for sure that Al Roker was there, click on the link for a video. But, for me, just the idea that Guy had been there ('they' are sticking by their story. I looked all over the internet and could not find the episode...maybe 'yet to be aired') was good enough. This is far from our 'normal', but hey, every now and then, going off the beat and path w/ our good eating habits is fine...we had a great time and the food along w/ the novelty was all worth it!!!