Dear Congressman/Woman...How was your day?

Dear Sir/Madam,

How was your day? You would like to hear about mine as a parent of a child with diabetes, you say? To put this in context, please know that much of this stems from taking my son for a tetanus shot on Saturday which was required to play middle school football. So here goes:

2:00 a.m. Woke my son to ask him to go to the bathroom to check for ketones (acid which has been building in his body and if the level becomes too high, some parts or systems in the body will not work in this "acid polluted environment" according to "A First Book for Understanding Diabetes"). He was too tired (and so was I) so I let him sleep another 2 hours until 4 a.m.

4:oo a.m. Woke my son for a second time and begged him to test for ketones. He stumbled into the bathroom and the test was negative. He told me, "Thank you very much for making me wake up." He then checked his blood sugar with a finger poke and glucose meter. The meter read 200. With a negative ketone reading and extra insulin in his body from a 10:00 p.m. injection, I figured he would be o.k.

6:30 a.m. I got up to get ready for work

7:30 a.m. Woke son up for a third time and had him repeat steps above. His blood sugar was now 331 and his ketones were large. I returned to my state of confusion with this most confusing disease but I had to get myself out the door for work (as I am trying to be a productive member of society to help our economy get back on track and yeah, to help pay the bills which most one-income families cannot cover these days). So, I loaded up another syringe mixed with long lasting and short acting insulin to hopefully flush the ketones out of his system. I popped a frozen omelet in the microwave, got a bottle of water for him and gave him both before I headed out the door for work.

8:30 a.m. Prepared for meeting with client.

9:40 a.m. Left for client meeting and called son to see how he felt to make sure he didn't crash (lose consciousness or go into a seizure from too low of blood sugar from extra insulin). He was o.k. so I headed into client meeting where I...

10:00 Reviewed digital media plan with healthcare client (go figure, a morning focused on all things health related)

11:10 Back at office to work on various other client ads

Noon Called son to check on blood sugar/ketones to find out that we were back on the rollercoaster ride called "ketones". While his blood sugar was only 119, his body had now produced moderate ketones.

12:20-12:30 Tried to convince son to give himself more extra units of insulin with his lunch to again try to flush them out of his system. I didn't succeed.

12:30 Called staff at local Children's Hospital to confirm extra doseage of insulin I thought I should have him take.

1:00 Left office to take a late lunch at home which would also help me succeed in getting extra insulin into my son. You see, he really, really wants to be a football player and I've told him diabetes will not stop him from anything he wants to do. So, I'm not about to give up just because he doesn't want to do his own shot today. It's only been 2 months since he's gotten up the courage to do his own injections, and today he wasn't up to it.

1:15 Arrive at home, give son extra insulin, grab a quick lunch.

1:30 -2:30 Log into work email at home and do an hour of work before I head to next client meeting

2:30 Call neighbor to ask her to take son to practice (at least to get weighed and fitted with pads, uniform, etc., but not work out since he still has ketones)

2:40 Call local Walgreens on way to client meeting to refill syringes and ketone strips.

3 til EOB day: Attend client meeting

5:10 Head to middle school to pick up son from football practice.

5:40 Son gets into car and I see he's sweating. Worry that he did drills (when I told him not to exercise with ketones) but he informs me that it was very hot in the gym when they were finding pads, pants and helmets and that's why he's sweating. Worry on way home that he'll have ketones again.

5:50 Swing by Walgreens to pick up two prescriptions and thank the Lord that hubby has insurance to cover all costs.

6:05 Drop neighbor kid at his house

6:10 Finally home to discover the pharmacy has given me Novolog pen "needles" rather than syringes. My son is using both pens and needles now, so the pharmacy must have gotten confused, but I do not have enough syringes to make it through the night, so I ...

6:15 Call the pharmacy for correct refill. Meanwhile son tells me he's checked for ketones again and they are negative.

6:35 Go back to pharmacy for syringes. Find out they have "20" in the whole place. They don't have enough for complete refill so I'll be back tomorrow.

6:50 Home at last.

7:15 Husband calls to say, "Hey dear, how was your day?" This is usually where until a few years ago, he would have asked, "What's for dinner?" He's learned not to do that. Shortly after our son's diagnosis, he took over the grocery shopping for steak, salad and sides so I could focus on refilling supplies for syringes and sugar tabs.

8:10 Son checks for ketones again and guess what... they're back! My husband is almost through grilling the dinner he's made for us, when I hear/see two F16s buzz over our house as they return to their National Guard base.

Which reminds me...I don't mean to dismiss the war on terror, but I know we said we wouldn't let the enemy invade on our home turf again. I'm sorry I feel this way, but I feel like we've failed. You see, everyday, moms like me fight an enemy called diabetes. We use the tools/weapons we have to protect our kids (glucose meters, insulin pumps, syringes, etc), but in the end, I don't know we've made much progress. I feel like I'm constantly on high alert against the enemy and when I get the energy to get out of my foxhole, the enemy (diabetes) beats me back down. So, if you can spare of dime or two of taxpayers' dollars, please help us find a cure. We're kind of tired of the battle (but don't worry, we signed up for lifetime duty)....and, I sure don't want my son to inherit this debt, too....

Thanks for listening.

An Inspirational Climb

The blog/Twitter world has been a-buzz today with comments about the recent Roche Summit. A blog by one blogger (who wasn't there) was upsetting to me. Rather than adding to her page views (which mean a lot to her) I'm posting part of my comments here:

I now know after reading what you call these "feel good" bloggers that we're all in the same boat, doing the best we can with the oars and paddles we've been given. There ain't no life boat that's been thrown our way yet. So before you dismiss them because you can't get a reading on the "feel good" aspect through Google Analytics, know that I don't care if I'm their only reader on a given day or their 10,000th reader. On that day, they helped me get through one more day of dealing with the D! That's all anyone who writes anything can ask...to be able to reach one person at a time so they don't feel so alone in the existence of this big, overwhelming disease.

In light of the discussion today, I wanted to share a POSITIVE story since it would be waste of my time to focus on the negative.

This weekend I was blessed to attend a meeting featuring a very moving, inspirational speaker that, drum roll....1) is living with chronic illness 2) is spreading the message that many things are possible while dealing with chronic illness and 3) is receiving money from big Pharma to accomplish new goals (not with oars, paddles or lancets, but with ice picks and oxygen tanks) while living with chronic illness. I thought it would be an interesting time to share more about her.

The woman's name is Wendy Booker and you can read more about how she's raising awareness about living with Multiple Sclerosis here.

What I love about her story is that she has tuned into enjoying, yes enjoying, the journey, no matter WHERE it takes her. She's allowed herself to be open to new opportunities and she admits she never would have believed that after 11 yrs into her journey, it would lead to the most unlikely situations, such as setting up a a non-profit to help the Sherpa children in Nepal.

Here's a quote from Wendy from a recent interview in Women's Running magazine:

"I first began running in 1998 to push back against a devastating Multiple Sclerosis (MS) diagnosis. Today, I continue running to advance the MS cause, and to inspire anyone with an obstacle in his or her life to try a little harder and dig a little deeper."

For her that has meant partaking in nine marathons and picking away at (scaling) six of the Seven Summits since her diagnosis. At the end of her talk, she showed pictures from her climbs as well as the children she has helped in Nepal. The pictures were set to U2's "Beautiful Day." By the end, I was in tears and ready to keep fighting the fight! (As if there is a choice?!)

In the spirit of Wendy Booker and all like her, I say, keep rocking D-OC...raise your voice, raise awareness...all the while raising our spirits!

And that's the way it is

I just heard (first from Twitter and then watched CNN) that Walter Cronkite has passed away. He defined great journalism. I didn't realize until I just watched the CNN tribute that he retired the year I graduated from high school. I'm sure he's one of the journalists that shaped my decision to study journalism the next four years at college. That was so long ago, I don't remember how I chose that road except that I knew I loved to write.

The CNN tribute showed the footage we've grown to love to hate...the heartbreaking news that JFK had died after being shot in Dallas. I've thought about sharing this story before, and feel it's appropriate tonight.

My story is that my mother recently shared that when this monumental event occurred in 1963, she had no idea it had happened. Her story? My story? She was taking me to the doctor for my six month old immunization shots and had not heard the news. To understand this story, you would have to know that by 1963, she had given birth to her fourth child (me) within a span of five and a half years. I can't even imagine how she kept up with the diapering, the feeding, the clothes washing, etc.

As my mother reflects back, she can't either, and now says that when she showed up at the doctor's office with me in tow for my shots, she didn't understand why the nurse at the front desk looked dumbfounded and asked her, "Why are you here?"

She said, "What do you mean, why am I here? Zita is scheduled for her shots."

The nurse then told her the news that JFK had been shot and they were closing the doctor's office NOW and she could come back later.

When my mother told me this story, my first reaction was, "How could she be this far out of the loop?" However, when I put it in perspective and realize it was in the day that she received news from three T.V. stations and probably only one local radio station AND was cooking, cleaning, and tending to four small children, of course she had not had time to tune in to this news!

Now that I am the caretaker of a boy with Type I diabetes, I get it even more! As a Type 3 mom, we're on alert 24/7 for their needs and we would not have it any other way. Our mother instincts take over and our children come first, breaking news or not...and that's the way it is...Godspeed, Walter.

Our Entry into the World of Diabetes - Part II

Yes, our son had started wetting the bed, but I tried not to make anything of it even though he had never done this before, ever! I thought it was unusual but I also knew I was dealing with a child who was very aware of his surroundings. So, my mind filled with questions. Was he worried about moving to a new house? Was he worried about making new friends in a new neighborhood?

The last time he had had a big change in his surroundings, he had been 3. He had been moving from the 2-yr old room at daycare to the 3-year old room. The daycare's procedure for handling the move was to have 5 or 6 kids from a room move together to the next room, so they had a few friends who were also moving at the same time.

My husband and I didn't talk to our son about it much. We figured the less we said, the less he would think about it. However, the weekend before the move, he proved again that at the tender age of 3 that he was very aware of what was going on around him.

That weekend, my company had our annual outing to a local amusement park. We enjoyed a great day riding rides and playing carnival games. At the end of the day, we buckled our son into his car seat and were ready to head out of the park when our son piped up from the backseat and said, "I don't want to go to daycare tomorrow."

"Why is that," I asked as I looked nervously at my husband.

"Because," he said, "none of my friends will be there tomorrow...and my teacher won't be there either." He had somehow put the pieces together that tomorrow would be the big day for the move into a new room at daycare although we had not mentioned it in weeks.

Two years later, in the monumental fall of 2002, our family thought we were just moving across town. But on Oct. 21, 2002, on the day of our son's diagnosis of diabetes, we landed in a foreign country where we didn't even speak the native language. It would be the start of a journey to a new place and once again, none of our son's friends or teachers would be there...or so we thought....

Our Entry into the World of Diabetes - Part I

It was October 2002 and our lives were filled with much promise. I had been at my new job at an advertising agency for just over a year. At that same time, we had been in our current house - a 1958 blue ranch - for seven years. We felt we had outgrown it even though there were many things we loved about it: the hard wood floors, the cove ceilings, the beautiful tree-lined neighborhood and good neighbors who were friends. But, it didn't seem big enough to hold the future I dreamed of for my family.

The lack of storage in our 1200-square foot house left me using my son's closet to hold my clothes for work. Now that he was five, I thought the time might be coming that he would soon be telling me to get out of his room. Expanding was a word for how I felt about our future. We would get expanded closets to fit our expanding dreams.

But what happened that fall made me feel like my world was collapsing rather than expanding. Our world would soon close in so tightly around my family that sometimes I didn't know if I would be able to breathe.

Looking back, fall is a better word to describe that time....another fall harvest, a feeling of falling from grace, a total free fall...

Fall was always the time of year that my husband made his annual pilgrimage back to his hometown in rural Iowa to help his friend with the corn and soybean harvest. It had become his annual retreat to sanity as he called it. He treasured his time working with friends in something he felt was a calling. He also enjoyed the time alone in a Case I-H tractor late at night when his only company was a harvest moon in a pitch black field, rock music blaring from the tractor's radio and maybe a Bud Light or two.

Back in Des Moines, I was keeping things going while he was gone for two weeks. Our son was in kindergarten, so there was the usual running to daycare twice a day, working a full-time job, grocery shopping, laundry and play dates.

We had found the new location for our expanding dreams, so I should have been packing boxes at night in anticipation of the big move, but I had started to come down with bronchitis and didn't have enough energy to get much done. AND, our son had started to wake me up several nights a week with an odd new occurance. He was wetting the bed.

Reveling in our Independence Day

This weekend, there were three main events in Des Moines that attracted thousands of people. They included the Arts Festival, the Hy-Vee Triathalon and the first sell-out concert of the year featuring Taylor Swift and Keith Urban. Each event had thousands of fans, admirers, and enthusiasts to witness the fine performance at each.

I did not attend any of these events. But out in the suburbs, away from the crowds and all their glory, something magical happened which only I witnessed. It was a turning point in a young life, my son's life, and it is his next step towards his "Independence Day" when he will be fully in charge of his diabetes care.

My son was diagnosed at a very young age with diabetes. He has had no problems from the start with the finger "poking" to test his blood sugars and over the years the carb counting. But the next step in taking on more responsibility required him to do something he's been working up to for years -- giving himself his own insulin injections.

We started down this path two years ago, but due to his fears, it's been put off. Sports is the incentive I believe he needed to get him to this next step. He's been told by his doctors and mentors that to get to where he wants to go with school sports -- football, basketball, etc. -- he'll need to take over more of his care. For example, when he travels on the bus this fall to an out-of-town game, he'll want to be able to take an insulin pen and give himself a shot as needed.

Our certified diabetes educator has always been good about setting goals for us as a family. In the beginning, it was baby steps...let mom and dad use a different site for an injection...you want to give your arms a break...rotate your fingers for the testing, etc. Our most recent meeting with the CDE was during the second week of June. My son decided that his goal would be to practice giving shots on oranges the rest of the month and then give himself a shot by the end of June.

My mother, a retired nurse, stayed with us all last week. I thought for sure he would want to practice his insulin shots when she was around. She left Saturday at noon and my son still had not tried yet. Around 2:00 p.m. he said he wanted to practice on the lemons grandma bought at Target (yes, she said lemons were cheaper than the oranges and they would work just as well). He practiced about four times and laughed thinking about shooting insulin into a lemon and we said we better make sure to throw it out right away so no one would grab it out of the refrigerator later.

At 6:00 p.m. he asked what he could have for dinner if he didn't want to wait to eat with his dad and me. I found some leftovers. He said he would eat those and one of his favorites, a lemon Italian ice. And, oh by the way, if he did his first shot tonight, could he please have a new video game. This last request threw me for a loop since I had invested in quite a bit of gaming material in April for his birthday. But, if that was the reward he wanted, I decided to do it. Just like that...he was ready to try to give his own shot.

He got the insulin pen set on the units he needed, he washed off his right leg (which he's been saving all summer to use for injections because he knew it would be easiest for him to reach) and he sat with the pen in his hand determined to do it...and then said "oh my god" as if in disbelief that the day had finally come, stopped the downward motion of the pen before it broke the skin and started to cry. I told him it was o.k. and for once I didn't cry. I told him I knew he could do it and that since the pen has a shorter needle, I was sure it wouldn't hurt like the syringes. He wiped his tears away, slowly pushed his hand towards his leg...and did it. Then, the tears really came...for both of us. I hugged him and told him I loved him and that I was SO proud of him. I asked if it hurt and through his sobs he said "no".

About an hour later, our family took a road trip to the local video store. Yes, another big moment rewarded with video games.

Others can judge my parenting and my willingness to spend over $50 on a video game for this act. But they don't know the price this disease has taken on our souls and spirits. The price of one video game is minimal in my book for the lesson my son needed to complete...it's something he needs to learn in order to take care of himself, for it truly is the difference between life and death.

And no, there were no angels singing when this glorious event took place. There were no fans in a grandstand to cheer him to the finish. There were no "wanna be" enthusiasts asking for his autograph. There was just me and him, mother and son, and he will forever be my hero.

Living with circumstances we didn't choose

When I was growing up, I received a lot of parental advice about making good choices...study hard and get into college, pursue a profession you are passionate about, live within your means, etc.

When it came to dealing with life circumstances that we didn't choose (for instance, diabetes) my parents were more about living by example than talking about it. I don't have to look any further than my father.

He was a man who did not choose to:

• drop out of school at 13 to help support his parents and 10 siblings during the Great Depression.
• serve and get injured in the Korean War
• be handed a life sentence of Lou Gehrig's disease

My father did choose to:

• not accept a Purple Heart when he was injured in Korea because he didn't want to worry his mother back in Iowa
• not complain when he was attached to a ventilator for the last year and a half of his life
• greet each visitor at his hospital bed with a smile on his face and the line he became known for, "What's new?"
• stay financially solvent during the farm crisis of the 1980's

Yes, this man, after watching his parents lose everything during the Great Depression, chose to make a living again being a farmer. It is probably the ultimate career for someone who is o.k. with letting go and not being in control. My father knew he didn't control the wind, the rain or the storms. Yet, he had faith that each year, with a lot of effort on his part, he would harvest another bountiful crop. It didn't always work out that way, but he would start over each year and try again. The land of farming is where I was also comfortable. For 22 years, I made my living by writing about the supplies that farmers need to make their living.

I was never tempted to follow my mother down her career path. She worked as a nurse in the land of healing -- a land I never, ever intended to wander into. None of the sights, smells or stories of this land appealed to me.

During high school, my parents offered me the "opportunity" to follow my two siblings into work at a nearby nursing home as a nurse's aid. While this was a great choice for my two siblings who eventually became doctors, I was no dummy! I was not tending to bed pans, bed sheets or bed sores.

When my son was diagnosed with Type I diabetes in 2002, I said to myself, what cruel joke is this? My sister, brother and sister-in-law are the doctors in the family. They are the ones prepared to take care of a child with this chronic illness. Who in the world thought I could handle this? Not me! My son was now entrusted to someone who would give him at least three shots a day and who had a distinct fear of needles! I barely made it through the three years of my own childhood when I had to have one allergy shot a week!

Years ago, when our son was first diagnosed, my husband and I were sharing our story with an older woman at a restaurant while we waited for a table. She then shared her life story. She had lost her first husband in a war and raised three boys alone. She unassumingly looked down at the bartop and said, "You know, if we all had to do it over again, and you were put in front of a big closet full of life's problems and you were able to choose which ones you wanted to live with, you would probably pick the problems you already have." I heard her message: you maybe should be thankful that you at least know what you are up against and have been told how to manage it.

Knowing your opponent is half of the battle -- half the heartache before my father was diagnosed was not knowing what he was up against. Once he knew, he never gave up the fight. And, he never gave up his love of life. When he spoke, someone had to hold an artificial larynx next to his throat so that it would vibrate and create sound so we could hear him. I would sometimes get frustrated when trying to interpret what he was saying. But, he would click his tongue and give me a stern look that said, "Don't you dare give up on me."

I owe it to him to keep putting one foot in front of the other and keep playing the cards I've been dealt. For, there is no other choice for the blue-eyed boy I've been entrusted with. A boy that inherited my father's eyes, the kind that turn green in just the right light. And, my son has inherited something else from the grandfather he never knew:

He's a fighter like you, dad, and I know together, we'll get through this.

My father would have celebrated his 82nd birthday last month. Comedian Billy Crystal got 700 Sundays with his father. I was lucky enough to get 27 Father's Days with my dad. Happy Father's Day to all the dad's out there. And mom, I'm sorry, but the boy says my shots "don't hurt as much as grandma's" although you had 25 years of practice.