Wednesday, March 31, 2010

The Ride

I have been fortunate to have some wonderful mentors and advisers in my life. I have received
guidance and counsel from my amazing husband, my family, my friends, my clients that I have been honored to attend, and the occasional unknown stranger with the right comment at the right time. I believe many of my most poignant realizations about myself and life have come from none other than my children.

Our family has lived an incredible journey so far, varied and diverse. A life many are surprised at after they have met us, not knowing our history. A life I love and am fiercely proud of. Our lifestyle is unique, to say the least. Somehow everything in our life is processed and related back to either birth, because of my passion as a doula; or horses, my husband's passion as a farrier. Diabetes is no exception.

Farrier- not sure what that is? Neither is the rest of the non-equine world. Putting it very simply, he puts horseshoes on the feet of horses. A modern day blacksmith. My husband is a genius at what he does, combining science and art for the health and well being and performance of the horse. He is passionate about what he does and has a well earned reputation for his expertise. Unlike England and Europe, horsehoeing in America is unregulated and no formal education system or accreditation system exists. My husbands passion for education and advancing his skill has set him on the path to obtaining the recognition and accreditation required in England to shoe horses. The test for obtaining an Association for the Worshipful Company of Farriers is grueling and demanding. He studied for over a year and when the opportunity to take the test in America for the first time ever presented itself in a small town in Missouri, my husband signed up. He studied for months and practiced building the handmade shoes every spare moment. We worked hard as a family to support him.

Our oldest son T has always been interested in shoeing horses. The kids all go with Sam to work during the summer and breaks, traveling around meeting people and visiting with longtime clients and hanging out at the barns. Many of our clients have watched the kids grow up over the years. T and C both have several hundred dollars saved up from working with their Dad. T is especially interested and spent many hours helping Sam study and forge shoes out of straight metal bar stock.

"So, what does all of this have to do with diabetes?" you ask- hang in there with me, I am getting to it.

As a teenager obsessed with animals and horses and cowboys I started listening to country music- mostly to piss off my Dad. (It worked, he detested country music.) I must admit, my own taste has changed dramatically since then and my rebellion mostly wore off. One artist that I still love is, Chris LeDoux; more cowboy poet and storyteller than country singer, his songs have marked many poignant events in our life. Our wedding, birthdays, parties and special memories of a ranch living lifestyle left behind are fondly reminisced every time I hear his music.

Back to the test my husband spent so much time and energy studying for. I went with Sam to Missourri to support him for the exam, leaving the kids in California in the competent care of my Dad. The morning the exam started my husband was more nervous than the day we got married. Just before going in to start the exam, he got the following text message from T. An excerpt from a song by Chris Ledoux we all love. It said,

"Sit tall in the saddle, Hold your head up high
Keep your eyes fixed where the trail meets the sky
Live like you ain't afraid to die
And don't be scared, just enjoy your ride"

That verse was exactly what my husband had needed to here. It wasn't about the test, it was about the journey. When I couldn't come up with any words of wisdom, our son who was twelve at the time, provided the perfect wisdom at the perfect time.

This last week has been a rough one. Diabetes is consuming. The fear of the unknown crippling. There have been terrible events recently that prove how horrible this disease is. The grief at times has felt overwhelming. This disease and what it is capable of sit like a foreboding shadow in the back of my mind, showing itself in my weak and vulnerable moments.

We have cried, raged, grieved and cried some more over the pain this disease causes. And yet, life keeps going. We have played, laughed, loved and kept living. Diabetes takes precious time away. Time spent carb counting, weighing food, planning, logging, testing, learning, worrying, the list goes on and on. Time that just a short while ago was taken for granted. Time spent free from the weight and constant vigilance this disease demands. I won't let diabetes take one more second than it requires from us. Not. one. second. So when I can't come up with any words of wisdom and comfort, words of hope. I will take another life lesson from our son and Chris Ledoux.

"Sit tall in the saddle, Hold your head up high
Keep your eyes fixed where the trail meets the sky
Live like you ain't afraid to die
And don't be scared, just enjoy your ride"

Thank you for sticking with me on this one. I know it took a while to get there.

Friday, March 19, 2010

A Month Ago I Didn't Know...

A month ago I didn't know hardly anything about Type 1 diabetes. I didn't know that it would put our healthy, active, intelligent, amazing boy in the hospital fighting for his life a mere thirty four days before his thirteenth birthday. I didn't know how grateful I would be for a diabetes diagnosis, grateful it was something we could educate ourselves and learn to manage. Grateful that we had so much support and love from the hospital staff, our family and friends, and from other patients and their families in the ICU, who gave us insight and a perspective that made our diagnosis much easier to cope with.

I didn't know that he had every sign of diabetes for the two weeks previous to ending up in ICU. Hungry all the time, thirsty, frequent bathroom visits, less energy, leg cramps, heartburn, more stressed. Of course he's hungry- he's grown two inches in six months; of course he's thirsty-he's finally drinking water the way we have drilled into him for the last ten years; of course he's peeing a lot- he's finally drinking!; of course he's tired- remember he grew two inches in six months! The little voice in my head (my instinct, my internal wisdom, the voice I tell all my clients to never ignore) kept saying... "there is more to this... something is wrong..." Instead I scheduled an appointment for him when we got back from our trip. Three days before ICU, I even told my husband and best friend that T had signs of diabetes, but dismissed it because the idea seemed, for lack of better words, absolutely absurd. Not our family, not our son.

Two days before he became so seriously sick he took his second degree brown belt Shotokan Karate belt test and passed with flying colors. The next day he was tired. It made sense, he had worked hard. The next Monday he went to school, although he looked exhausted. We had planned on leaving that day for a business trip with the family. I picked him up from school and knew that the trip wasn't going to happen. Something was wrong. He looked gaunt, skeletal, anorexic. He said he was tired and his legs hurt. He had heartburn, and a stomach ache. He smelled strange, although it took me a while to recognize the smell. Like super ripe fruit-right before it goes bad. I attend women in labor and happen to be one of the people with a genetic ability to smell ketones. I have smelled ketones on pregnant women with diabetes and on women in labor. I didn't connect the smell to T until we were at the ER. Then it all made sense.

DKA hit T hard. Diabetic Ketone Acidosis is a condition where high blood sugars create a serious chemical imbalance of the blood. The body's pH becomes eschew; creating a host of serious potential complications, including seizures, heart rhythm issues, brain swelling, coma, and yes, sometimes death. T's blood chemistry values looked pretty bad, his doctors and nurses were shocked he wasn't in much worse shape. His body was strong and did a lot of compensating for his condition. It took three days in ICU and two and a half days on an insulin drip with constant fluid replacement changes to get him stable.

An A1C is a blood test that measures the average blood sugar in a diabetic for the last three months. T's was 14. Yep, 14. Ideal is 6.5 to 7.5 for his age. The scale doen't even go past 14. His average blood sugar had been over 400 for the last few months. "Normal" is between 80-180. At least we have lots of room for improvement!

In the meantime, we became students of diabetes. Learning, questioning, drilling educators, doctors, nurses and the occasional stranger in the cafeteria, elevator and hallways. The more I knew, the less scared and out of control I felt. The more I knew, the better I felt. The more I knew, the better we could cope and the sooner we could go home to adjust to our new normal life.

The diabetes learning curve is steep and demanding. Carb counting, blood work deciphering, short acting, medium acting and long acting insulins, blood glucose meters, insulin adjustments, syringes, insulin pens, insulin resistance, highs , lows, rescues and recoveries, honeymoon periods... the list goes on and on. Then you take all that you learn and try to apply it to a human being that is never static and always changing. Emotions, puberty, sleep patterns, food processing and hell, lately blinking seem to change everything we have just figured out.

We are home and honeymooning. T is gaining back the 15 or so pounds he lost. Insulin doses are dropping dramatically and sugar consumption is rising dramatically. Lows, lows and more lows. I am sure as soon as we figure it out-it will change!

A month ago I took for granted how mature, brave and wise our son is. I didn't know how supportive, and brave his siblings are. I didn't really know who I could depend on among my family and friends when life throws an unexpected obstacle our way. I didn't know how profoundly, we as a family have touched the lives of those we love. I didn't know how grateful I could be to the people that have supported us and loved us through this time. I didn't know the depth of worry and love we could have as parents for our children. I didn't know that a T1 diagnosis would introduce us to a whole new community of warm, loving, supportive people we never would have otherwise met. A month ago I didn't know I had room for one more cause in my life... now I do.