Wednesday, October 26, 2011

Needles are not fun.....

This morning Connor and I headed to Sonora Quest Labs for Connor's annual blood work. The first of many more years to come.

While sitting in the lobby one of the other waiting "victims" noticed Ol' Blue protruding from Connor's hip. She asked what kind of pump he had. Her younger son (not present) wears an Animas Ping.

As I looked at this mom there was a moment of sameness. Fear, frustration, anxiety, helplessness, hope, understanding, love, and devotion all summed up in one glance at each other. I knew, that she knew what it was to live this type 1 life, and I knew that I wasn't alone.

We talked about the upcoming JDRF Walk for a Cure. This would each be our families first walk. Our boys were diagnosed one month apart.

 As our name was called we walked into our room and waited for the impending blood draw. As our lovely phlebotomist gathered her supplies another staff member came in and handed her their JDRF walk shirts. We then had a conversation with our needle wielding blood enthusiast about how Sonora Quest was a big supporter of JDRF. There were several staff members participating in the walk itself while others were volunteering at their company booth. 

It was so refreshing to see people talking/advocating about the disease MY son has. Most people/companies/media associate diabetes with type 2, a completely separate and different illness. 

It had been a great start to my day. Meeting another type 1 mother, and talking to someone who's company is a huge supporter of something that so deeply affects my life. It was like a had been given a renewed sense of strength and determination.

That is until.....

Connor saw the 3 vials that would soon contain his crimson blood and the needle and tubing that would be extracting it all. I could see this sense of fear wash over his face. My child who gives me strength with the amount of courage he shows me everyday, who never even bats an eye at all the finger pokes, site changes, shots etc, was afraid. I watched as all of the color drained from his sweet face. I watched as he held back the tears as the needle pierced his tender flesh. To him it hurt, A LOT.

His arm was then wrapped in a green bandage and he went to give a urine sample. Having just passed our one year mark, and this being our first annual blood work I asked this patient woman what the urine sample was for. She told me it was to test..... kidney function.

I felt as though all the air had just left my lungs. I was caught off guard. I'm sure these are standard tests that everyone with diabetes is given every year, but having a father who has been on dialysis for going on 2 years due to renal failure, my mind instantly flashed to what could be for my son. The complications that he might one day face despite all of our hard work.

As we walked to the car Connor pleaded with me about not going to school. I asked him why and he told me that he didn't want the kids to ask where he was or why he had the green bandage on his arm. He told me that they constantly ask him if it hurts when he tests his blood sugar, or why he gets to go to lunch 5 minutes early, or to the nurses office whenever he "wants" to and why he gets to eat special "treats" during class. He told me that sometimes he doesn't like being different than everyone else.

Trying to pretend that I wasn't dying inside, I offered the only words that came to my now frazzled brain. I told him that his classmates don't really know what it's like to have diabetes. All they see is that you get to do all of these different things. To them it might seem like you are getting to do something fun not really understanding everything you have to do to keep yourself healthy.

And then came the rest of the heart piercing words flooding out of his mouth....

"There's nothing fun about diabetes. There's nothing fun about high or low blood sugars and how crappy they make my body feel. There's nothing fun about having to guess the amount of carbs in your food and hoping that you guessed right and that your blood sugar doesn't go too low or high because of it. There is nothing fun about having your blood taken. There is nothing fun about all of this stuff I have to do every day."

And with that I called the school to excuse him for the day.

Today started out as a great day, uplifting even.

Now my heart just hurts.

I found this quote that I really love. It helps on days like today.

~Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow." ~ Mary Anne Radmacher

Saturday, October 15, 2011

That Day and This Day

October 15, 2010, the day of days.

It was this day that the big D entered our lives. I have thought for months what I would write today on the 1 year anniversary of Connor's diagnosis. But now that I am faced with today there don't seem to be the right words. Today has been filled with a wide range of emotions for me. At different times throughout the day I've had flash backs to a year ago. Standing in the nurses office as she tested Connor's blood sugar for the first time. Seeing that 525 on the meter, knowing in that moment nothing would ever again be the same. The drive to the hospital stopping for water because he was so thirsty. Waiting in the triage room for the ambulance to come and take us to the children's hospital, praying for Brent to get there in time. Watching Connor as he played with all the different games on the tv in his room. His tear filled eyes that pierced my heart as he watched me give him his first injection. Almost every detail of every moment has been seared into my memory. I can tell you the clothes he was wearing, the food he ate, the movie that he watched as he fell asleep. The friends birthday party he missed, the phone calls I made. The look of worry on my oldest son's face as I told him we had to take his brother to the hospital. I can remember it all. It's been like a movie, playing in my mind all day.

As I have reflected on the events that took place a year ago I wonder, will the sting ever go away? 5 years from now will I be able to remember everything with such clarity? Will I be able to look back on THAT day and not have my eyes fill with tears?

These last 12 months have at times been daunting. Some days the weight of being a parent and a pancreas is heavier than others. Our daily routine had completely changed. I haven't slept thru the night in a year. I am up until midnight and up again at 3 am testing his blood sugar. Some nights I am up every 2 hours trying to get a stubborn high blood sugar back into range. I wake him in the morning with bated breath hoping that I've kept him safe for one more night. I attend every field trip, birthday party, and special function as his pancreatic backup. For me the nights are the worst. My mind always travels to the what ifs. What if my efforts as a pancreas aren't good enough. Will he suffer long term complications later in life because of the high blood sugars that creep their way in thru every growth spurt, cold, miss calculated carbs, or because the wind changed direction? Will he have a seizure from a low blood sugar we didn't catch in time? What if he passes out at school? Will the teachers/nurse know what to do. There is no greater fear to be had than that of a mother for her child.

We have learned a lot in the last 365 days. In fact I now speak a new language.

BASAL insulin: the insulin given via pump throughout the day to keep blood sugar steady.

BOLUS insulin: the insulin given at each meal

I:C ratio: the amount of carbohydrates that 1 unit of insulin will cover. IE. Connor's I:C ratio is 1:28. So for every 28 carbs Connor will require 1 unit of insulin.

CORRECTION FACTOR: how many points 1 unit of insulin will lower a high blood sugar. IE. Connor's is 1:100 or for every unit of insulin Connor's blood sugar will drop by 100 points.

TDD: total daily dose, (the amount of insulin administered during the day)

INFUSION SET: the part of Connor's insulin pump that attaches to his body. This must be changed every 2-3 days.

RESERVOIR: the syringe like canister that holds the insulin in the pump.

LOW BLOOD SUGAR: anything below 80

HIGH BLOOD SUGAR: for Connor anything above 150

504 PLAN: the protocol put into place to protect Connor during school, (being able to test/treat blood sugars, going to nurse when needed, absences, etc)

This list could go on forever.

I've watched my son grow and mature in ways I couldn't imagine. I admire his strength and determination. He hasn't let diabetes change who he is. He laughs, plays, explores, and imagines great and wonderful things. In fact, diabetes has only fueled his love for math. He thinks its funny to give me his blood sugar in the form of a math problem. He has taught me to love and have compassion, as we are all fighting some battle that is invisible to others. He is my hero and I am thankful EVERY day to be his mother.

As I have looked back over this last year, and have reflected on THAT day, I am grateful for THIS day. For this day we had lunch together, saw a movie, and enjoyed the day as a family. This day we laughed, hugged, and made good memories. This day diabetes was not the topic of conversation. This day diabetes did not take over our lives. This day diabetes was just something that we took care of as part of our everyday routine. This day I kissed and tucked in all three of my happy healthy children into their beds. And as I sit here on this day waiting to check Connor's blood sugar before going to bed, I think of all that we have been blessed with. On this day, his Diaversary, I am thankful.