T1D Looks Like Edward...

It is November 1st. It is November 1st, wow, how did we get here so fast. I was planning to go for one last spin in the lake yesterday, but I was told the water temps were 52 degrees and too cold for rentals, but, hey, come down anyhow, said the nice guy @ the Marina. God forbid I should fall out of the kayak, get hypothermia and wind up on the 6 o'clock news. So, until next Spring...I am just starting to accept that we are flying through Autumn. We turned the clocks back last night, so what will the gifted Colorado skies bring us tonight. We shall see. Much more important than anything I have just rattled on about, is that November is Type 1 Diabetes Awareness Month. JDRF has come up with 'T1D LOOKS LIKE ME' for this years campaign. I love it!!!

This morning, I began thinking about how far Edward has come since he was diagnosed in 2002. From multiple shots of insulin a day, to the nightmare of 8th grade, to books and books and more books of logging in formulas, times, carbs, insulin ratios, to locking himself in the bathroom the first Summer before he went to Camp Joslin (for diabetic kids from around the world), to claiming his independence when he started using the insulin pump, to receiving the Most Outstanding Staffer award that last Summer, after many Summers attending Camp Joslin. Mom and I cried, it could have been a Nobel Peace Prize. He lived through college. And I literally mean, he did not die when he went off to college as I knew we were on the clock teaching him how to manage his daily health care on his own. Daily health care for T1D=24/7, everyday of every year, there is no break. Camp helped allot, but it was a scary time as his Mom. He did a great job and clearly, most thankfully, he lived. He is 26 now. He is healthy, he works out, he eats well, he is a productive member of society, he is adorable. These were our goals for him as his parents, and we achieved them. Edward has his hopes and dreams well in tact, but collectively, we are all still praying for a cure. 

I am a T1D Mom!!!

World Diabetes Day

It is very very hard to imagine, knowing that your child (relative or friend, adult or child) has Type 1 diabetes and that there is nothing you can do to help save their life because you cannot afford insulin, test strips, a glucometer, let alone the advances of modern technology which we see in the insulin pump, and the soon to arrive, artificial pancreas. They would most certainly die. The cost, even with insurance is costly. Just recently, Edward was presented (yet again) with the idea of the CGM, or the Continuous Glucose Monitor, which sends information to the insulin pump, all in the quest for tighter control of blood sugars. The cost for the new equipment with insurance ( I drive this point home), ran in the thousands of dollars. Would we have signed on? Yes, absolutely, but Edward maintains that he does not want to stick yet another device into his body. The pump requires an infusion site which needs to be changed every 3-4 days, and sometimes it really hurts when he puts it in the side of his body. It is his choice to wear the pump rather than taking multiple shots during the day. The point is, he has a choice. I remember so clearly seeing footage after Katrina hit New Orleans, of a young girl passing out as she slipped away, not having any insulin, and a nurse hollering frantically for some 'Regular Insulin'. They were able to save her life. It can happen quickly. So, all this to say, we acknowledge World Diabetes Day, for all the people, young and old who simply cannot afford or have access to life saving medical supplies. I think now of the Philippines and the many people who are not only suffering because of a natural disaster, but those who may perish because they have no insulin.

We continue to pray for a cure, in whatever shape that takes. Be it the artificial pancreas (another high tech device), one shot of insulin every 6 months or a year, a vaccine, a pill...we'll take it.

I am a diabetes Mom.

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.

Walk for a Cure

Edward Lilley

The Rhode Isalnd Branch of the Juvenile Diabetes Research Foundation, or JDRF, will hold it's annual 'Walk for a Cure', in the ever beautiful Roger Williams Park on Sunday, October 16th. As a family we have been raising money for JDRF for the past 7 years. We are humbled by the generous hearts who have supported us over these years to help us raise over $40,000! Edward was diagnosed with Type 1 or Juvenile Diabetes when he was 12 1/2. Our lives changed on a dime that day. With the support of the outstanding community we have met through JDRF, we have great hope for the future with leaps forward in cutting edge technology from the pump, continuous glucose monitor, and the up and coming technology of the artificial pancreas. (I am just skimming the surface!)

Edward graduates from college in December and has done an awesome, exemplary, most excellent job of managing his daily health care, while away from home. This is no small task. Type 1 diabetes is 24/7. His Dad and I are proud beyond words.

Here is a link to Edward's personal fund raising page.

Advocacy in Action!!!

This past Saturday through Tuesday, I once again had the opportunity to go to Washington, D.C., representing the State of Rhode Island, as a JDRF advocate for Type 1 Diabetes. You all know by now, that my wonderful 21 year old son, Edward, was diagnosed 9 years ago today. So much has changed since then. Edward was just a little boy. Now, he is a young man, a senior in college, and has managed his daily health care for 4 years on his own w/ tremendous responsibility. I have said it before, I will say it again and again and again, we are so proud of him.

Tremendous changes have also taken place w/in the diabetic community. The insulin pump has emerged as a priceless piece of technology, along w/ the great strides being made w/ the continuous glucose monitor. Last year we successfully secured a multi-year renewal for funding for hundreds of millions of dollars for research for the Special Diabetes Program, as advocates from across the country descended upon Capital Hill. This year we presented our Congressmen and Senators with the artificial pancreas as a new technology. The artificial pancreas has demonstrated remarkable results in the hospital setting; now trials need to be done in the 'real world' or outpatient setting. This project needs FDA approval, and signatures from our leaders to move this project forward was our collective goal.

I was blessed this year to have two fellow Rhode Islanders running with me. Eileen Bristow, who has lived w/ Type 1 for 42 years, and and Kerri Morrone-Sparling who was diagnosed when she was 6 years old. Kerri's blog, 'Six Until Me', links into a growing community of Type 1 bloggers. Kerri is a new Mom and here is a small portion of her post on our visit to 'The Hill':

'All we did was share our stories. (It was like blogging out loud.) But we could see our words hitting home. "This kid?" I showed them a photo of BSparl. "She's not diabetic, but I am. And I need to be here for a long, long time so this little bird can have a healthy mom to take care of her. I'm not tugging on heart strings; I'm just telling the truth." This was my first time ever talking to someone outside of the community about how diabetes may affect my daughter, and the edges of those emotions were raw. Listening to Eileen and Amy share their stories made an impact on me; they hopefully made an impact on people whose support we need, as well.'

Once again, a hearty, THANK-YOU, to the Staff of the JDRF Office in D.C., for putting together yet another all important Government (few) Days. We have renewed hope for our children, friends and family as technology becomes more and more cutting edge, all most prayerfully leading to a CURE!! And for my beloved son, we remember this very day, 9 years ago, when you were diagnosed w/ Type 1 diabetes. Our lives changed forever, and in many ways for the better. We are humbled to be part of such a brilliant and determined community!!