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!!!

And Then There Were Two...

The Marina @ Cherry Creek

Rented...

We're off and paddling..

Looking good Edward...

Like a mirror...until later..

A moment of repose..look close, the white on the lake horizon is the flock of pelicans!!!

The pelicans let me get me get much closer..

These are BIG birds!!!

The Marina @ Cherry Creek State Park, wisely, is open until November. The sun is still very warm. Edward and I had been talking about going kayaking together for a couple of weeks, and yesterday turned out to be the chosen day. We rented the 2 red kayaks, but Edward quickly switched his out for one which was just a little bigger. I am so tiny, I fit anywhere, so the red kayak was still working for me. Off we went. The day was quiet. Looking around the 850 acre lake/reservoir, we saw that we had the place to ourselves. Wow, what a gift. At the beginning of the day, lake was like glass, very smooth, but paddling, maybe because I have not been swimming for a couple of weeks, seemed harder. We wanted to stick to the perimeter to get the most out of the foliage, what creatures we might happen upon, it is the scenic route. We made our way to the far side of the lake. They are easy to spot, the pelicans. Their stark white color is such a contrast to the autumn foliage, the very blue water and they are always in a group. Edward stayed back about 30 feet while I quietly paddled towards them, camera-ready. They let me get closer this time, and I am so happy w/ the couple of pics I posted. But, in true form, once they felt that I was too close, one by one by one, they lined up and away they swam away, to one of their other spots, also on the far side of the lake.

I was thinking that in about 3 months, this water will probably be frozen over, and rather than paddling in it, we might be walking on it. I was thinking that as a Mom, I used to be 'in charge' of Edward's daily activities which included allot of play. Eyes on Edward and his friends @ all times. That ended a long time ago, but this day he was checking up on me. Little person out there paddling against the wind, which kicked up while we too were @ the far end of the lake. Just checking on you Mom. Be still my heart.

'Then the child moved ten times round the seasons

Skated over ten clear frozen streams

Words like when you're older must appease him

And promises of someday make his dreams..'

                                'The Circle Game', Joni Mitchell

Post script: I am very very sore today...all that against the wind paddling...

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.

You Know What This Means...

Great burlap coffee bean bags, full of 'fresh' compost...thank you Whole Foods!

50 lb. bags of Whole Foods own compost!

Raised garden beds, after the long Winter...

Last years garden yielded so much in joy, and herbs, and color and the wonderful hum of bees...looking forward!

Well, this week was riveting to say the least. Edward made his way to Boston on Thursday, and much to his surprise, wound up on lock-down with the rest of the City on Friday. The stories of healing and heartbreak keep rolling in all in the same breath. Sweet Caroline. I have stopped watching for now. Edward flies back in tomorrow night.

Last year, I 'happened upon' a 50 pound bag of compost, a gift from Whole Foods and my garden was happy happy happy. I was not going to miss that opportunity again! Following the Colorado Springs Whole Foods on Facebook, I saw that yesterday was the day! Jimmy high tailed it over there, and we picked up 3 bags of, might I add, free, compost of their own making. So, you know what this means, this is a great sign, a hopeful moment, that re-planting is in the air, that I can start playing in the dirt once again. Planning a new garden is always exciting and this year is no different. I am wondering if the earth worms I bought lived through the winter, do they need to be replaced. Maybe I'll go digging later and see if I can spot any. Will the Greek Oregano actually come back, will the Honeysuckle bush start to sprout? They should. The work will be easier, as we will not be building the raised garden beds, although I did enjoy the process. I did discover that you can go to Home Depot or Lowe's and purchase wood pallets for about $15, and they are multi-purpose, multi-functional, already nailed together pieces of wood. I might make a potting table with 1 or 2 of them. We'll see. In the meantime yesterday was a start, a joyful, hopeful moment, exactly as Spring should be!

The Comfort Dogs...

 Edward is heading to Boston tomorrow for a long weekend, long planned, long looking forward to spending some time w/ his college friends. I think that right now Boston is probably one of the safest cities given the horrific events at the Marathon. For me, I am just now starting to feel this latest nightmare. I have sat, w/out emotion for hours in front of the TV, watching Anderson Cooper and the 'group' @ CNN, I have watched the World News, I have looked @ the photos over and over, I am reading the stories of Jeff Bauman Jr., who lost both of his legs below the knee, the heartbreaking glimpse into the short life of Martin Richard. I am listening to the doctors and nurses who treated the gravely injured men women and children, experiencing trauma themselves @ the sight of the extensive casualties they have so brilliantly treated. I am hearing brave the stories of heroism over and over and over again. I am just starting to feel. I am so grateful that my Family and Friends back East are all safe. Life is so fragile.

This morning on MSN, I saw the 'smiling' face of a beautiful Golden retriever, a comfort dog. One of the many dogs being 'dispatched' to Boston to help the families of those injured, to help the doctors and nurses who are themselves in need of comfort, to help anyone who needs some cheering up.  Two of the dogs, Addy and Maggie are coming directly from Newton, and will be doing what they are trained to do w/ their uncanny ability to discern 'sadness'. So, today, I am feeling. I am feeling sad, but honestly just the sight of the comfort dogs helped me...maybe I'll run into a Golden as the day goes. Hey you never know what the day will bring.

So here is to all the heroes, to all of the first responders, to all of the gravely injured (may they heal and live full lives), to those who lost their lives (we pray unyielding, unceasing comfort for their Families), to those who saved so many, to the dispatched comfort dogs, to Edward having a safe trip to Boston.

Father's Day...

Happy Father's Day Jimmy!!!!

...and so it began...2 peas in a pod!

To all you awesome Dad's, a very Happy Father's Day!

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.

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!!!

WHAT??????

Red and yellow peppers, growing green!!!

And you thought that my first post after moving to the ever lover-ly Colorado Springs would be pictures of the grandeur of the mountains in the morning and the majestic sunsets which really do take your breath away or the details of the plane ride out here, and how well (whew) the kitties fared, or how Edward's blood sugars were all over the place the first week we arrived, or that you really do have to drink alot of water to stay hydrated, or that unpacking is much more fun than packing (thank you Ann), or that I am thrilled beyond words to have a closet in my office. I could tell you all about that, but, whaaaat???? Yes, people I am posting pics of peppers. For those of you who go food shopping, you know that the cost of fresh produce has sky-rocketed. Especially, peppers...the orange and yellow peppers are like investing in gold. So, when I walked into our 'new' supermarket and saw red, yellow and orange peppers on sale, 10 for $10, my heart sang. I cut them from the top, like a pumpkin, shake out all the seeds which are left, then slice them open, cut out the veins, slice them into 6-8 pieces, and simply roast them w/ some olive oil until they are tender, and crisp all at the same time. It is like eating candy, they are so sweet, and 'au natural'. When I cut open 2 of the peppers, I was a-gog, when I pulled out peppers growing inside of peppers...they were so beautiful, I could not pass up the opportunity to take some pics. Hence, my first post from Colorado, peppers growing inside of peppers. There is plenty of time for all those mountain shots. From what I can tell, they are not going anywhere, anytime soon......more to come!!

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.

The Circle Game

Very first photo of me painting...I was 3. I wonder how many of those 3x5 cards I filled up that day!!

My little Ninja...already developing his 'Endpoint' character in his head...

There have been a few most memorable moments with Edward these past couple of years. He'll be 22 years old this month, quite grown up in ways. Appreciative, he's very very appreciative, and that's big. But, it was what he said to me a couple of days ago which warmed the cockles of my heart. Mom, he said, I was looking at your blog, and you know those drawings that you do (here it comes...). With a grin on his face which could only be described as pride, and a glimmer in his eyes, he said, (lo and behold), you have quite an imagination...what's going on in that little head of yours???? I smiled, inside and out. All I can say is, as parents, we live for these moments. My dear friend, Yo Mama tells me that on the other side of 26, they come around alot more often. Right now, I am still basking in the afterglow.

'And the seasons they go round and round

And the painted ponies go up and down

We're captive on the carousel of time

We can't return we can only look

Behind from where we came

And go round and round and round

In the circle game.'

Joni Mitchell, 'The Circle Game'

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!!

Mrs. Lilley Goes to Washington!

Insulin Pump

Many of you know by now, that my son, Edward, was diagnosed with Type 1 diabetes 8 years ago when he was 12. In these short, but life changing 8 years, tremendous strides have been made for Type 1 diabetics. Edward, and thousands like him have profited by the research in physical, tangible ways. The pump alone has changed the lives of so many with it's high tech ability to infuse micro drips of insulin all day and night. This gives Edward extremely tight control, which helps ward off complications further down the road. Research continues to be the key in our quest to find a cure. Research dollars have to be gi-normous to continue to see such great progress. The Juvenile Diabetes Research Foundation was started by Mom's, just like me, in 1970. Here is a quick overview of what JDRF is:

'JDRF is the leading charitable funder and advocate of type 1 (juvenile) diabetes research worldwide. The mission of JDRF is to find a cure for diabetes and its complications through the support of research. Type 1 diabetes is a disease that strikes children suddenly and requires multiple injections of insulin daily or a continuous infusion of insulin through a pump. Insulin, however, is not a cure for diabetes, nor does it prevent its eventual and devastating complications that may include kidney failure, blindness, heart disease, stroke, and amputation. Since its founding in 1970 by parents of children with type 1 diabetes, JDRF has awarded more than $1.16 billion to diabetes research.'

I became involved with the Rhode Island Branch of JDRF and quickly fell in love with Jenny, Mary Ellen and Nazira. Little by little, I was feeling my way to see 'where I fit best' within the organization. For the past year, I have taken on the role of JDRF Advocacy Leader. I work as a liaison with the JDRF office in Washington, D.C., representing the State of Rhode Island. I set
up meetings with our congressmen and senators to talk about the serious issues involved with the daily health care of a Type 1 diabetic. The D.C. office hosts an annual event they call 'Government Day'. It's more like, 'Government Few Days'. They fly the delegates in from all over the country and the action begins! We will be meeting not only one another for support, but the excellent staff from the D.C. office, top scientists, doctors, PhD.'s, and Alan J. Lewis, the CEO of JDRF! They will be turning us loose on the Hill and in the halls of the Senate to meet with our respective congressmen and senators. I'm leaving on a jet plane tomorrow, thankfully, no snow anywhere in the forecast!!

I am blessed and honored to be included in this dynamic community. As a whole, we continue to pray for a cure as the research continues. I will be away from the computer for a couple of days, although I will certainly have access. I'll keep you posted...

Life is interesting...yes?

Home Spa!!!

Yet another very cold weekend. My son is now back in Boston, snug as a bug, after Winter break...whew. Bless his heart, he kept his whirlwind contained to his room. However, I did spend quite a bit of time 'in there' to clean up, change the sheets, and enjoy the sound of the quiet. After a couple of hours I decided to pull out our new Conair aqua foot massager.

Aqua-jet foot massage has a relaxing effect on tired and cold feet. In this technique, two hydro-jets are used for massaging the foot. The feet are immersed in a pedicure bath filled with water. The water is released by the hydro jets at controlled speeds, which stimulates the circulation of blood. This stimulates the feet reflexes, thereby giving making your feet relaxed. The temperature of water in the equipment is maintained at a certain level....warm, wonderfully, warm!
I also made an avocado/honey facial masque, which I warmed up in the microwave. So, there I sat for 15 minutes, green faced (yes, good enough to eat!), enjoying the gentle aqua-jet massage. You can really feel a lingering 'tingling' from the hydro bubbles, and a certain satisfaction, knowing that you have done something truly kind for yourself. I left the avocado facial on for about 30 minutes and now, I am only sorry that I didn't think to take a picture of the mixture....next time!!

Wordless Wednesday

What your son or daughters' college dorm room might look like...

Edward gives us a good indication..home for the Holidays..:)))

It's NO JOKE...He's 20 Today!!!

Well, Happy 20th Birthday Edward! My son, the 'artiste', created this piece with the advances of photoshop, and was using it as his Facebook profile picture for a while (YIKES!). As interesting as this rendition of 'The Joker' is, Edward is, in my humble opinion, even a more interesting character. We have watched him really grow-up in many ways, even these past couple of months. As a child of the computer age, he 'gets it', he studies it, he wants more and more of it. Like the many layers applied to this piece of Edward as 'The Joker', the many layers of the real Edward are being applied to his Spirit and soul daily. He's still a work-in-progress, no joke!

Many more Happy Birthdays Edward!!!

Edward's Work...and Growth

Edward and I spent an afternoon at the Museum of Natural History, in the winter of 2007. He needed more 'life' drawings for his portfolio. We sat together and drew with pencil, this lion (bottom image) on the second floor of the museum. I love the drawing he did. We even made stamps out of the image. However, he was home this weekend from Boston and he showed me this pencil drawing he recently competed of another lion (top image). I must say, I believe he has really grown as an artist!!!

Thrilled for him...more to come!
Click here to see more of his work...

Happy Father's Day!!

...and so, fatherhood began...
2 peas in a pod!!

Jimmy & Edward, September, 1988

A very blessed Father's Day to all you fabulous Dad's!!

Happy Mother's Day!!!

....and so, motherhood began!!

Edward and Me
October, 1989

A very happy and blessed Mother's Day to all you marvelous gals!!!

Awwww, you guys are scaredy-cats!!!!

Since so many of you were scared of Big Kitty (or at least the look on his face!), I decided to do some damage control and show you this wonderful relationship between Edward and Big Kitty...really people, BK is the best man cat. He is loyal, very, very consistent, a real under your chin, rub you on the forehead because you are family, snuggle in kind of guy. The level of trust between Big Kitty and Edward is obvious, so have no fear, he's a love! (Edward too!)