My life is Amazing....

Sunday morning before church my husband, oldest son, and I had an appointment with one of the counselors in the bishopric. (one of the leaders of the LDS faith) Our son was first. He was there for a 6 month youth interview. 

As my husband and I waited in the hallway for our turn, I began speculating with a friend as to why my hubby and I were being seen. The minutes passed quickly and I had a great time catching up with a good friend.

The door opened and out walked my cute kid with two thumbs up and a goofy grin on his face. 

My husband and I were next. We took our seats and I anxiously awaited to find out the reason for our meeting. 

This kind man started off with, "I've got to tell you that you have a wonderful son."

"Why thank you. I kind of like him," was my reply.

His tone became ever so slightly more serious. 

He then proceeded to tell us of their conversation. He told us how he usually starts of his youth interviews by asking, "How's life?"

 It's a simple question.

A question that usually gets the common teenage response of, "it's good, ok, the same, etc."

When my son was asked this question his reply was,

"My life is amazing."

Taken aback at my sons response, this gentleman asked my son why his life was so amazing.

My son's simple answer was,

"Because my family loves me."

Here it is days later and I haven't been able to get that conversation out of my mind. Having similar personalities my son and I butt heads A LOT, being 13 I'm sure adds to that. I often worry that my other two children will feel like they will get lost in the shuffle.

 Diabetes is like a needy child who demands constant attention. And sometimes diabetes requires that attention above and before everything else.

It was such great comfort to know that my oldest child knows how much we love him.

But again his answer stayed with me....

Diabetes is hard. Demanding. Defeating.

Sometimes it's easy to drown in the unendingness of it all. The highs. The lows. Site changes. Insulin doses. Carb ratios. Activity levels. Sleepless nights. Dr. appointments. The list could go on and on. 

But when I stop to think about it, I have this wonderful support system. Even though family might not understand every detail of our life with type 1. They are always there ready and willing to lend a helping hand, words of encouragement, or a shoulder to lean on. I am so blessed to be a part of such a loving family.

Life with diabetes is hard.

But my life?

My life is amazing, because my family LOVES me!

P.S. The reason for our meeting is that I was called to be a primary teacher in one of the 3/4 year old classes.

What could you buy....

What could you buy with $2598.98?

A trip to Disneyland?

A used car?

$2598.98

That is the retail value of my child's life for 90 days.

(This does not include, glucose tabs, capri suns, ketostix, pb crackers, milk, 

batteries for the insulin pump, Dr. appointments, etc.)

Quality not Quantity

If someone were to be peaking in through my window, they might think that I spend a lot of time with my children, especially my Type 1 son. We ARE practically joined at the hip. It is true that I spend many hours with him daily. Some nights I spend hours with him while he sleeps. A lot of this time however is spent serving as a poor stand in pancreas.

I have been craving time with Connor. Quality time. Time with him that has conversations that don't include:


Have you tested your blood sugar? 

Are you high? 

Are you low? 

Do you have glucose tabs? 

Juice? 

Is your meter in your backpack? 

Does it have strips in it? 

Mom my blood sugar is 200-75+7. (Yes he gives me his blood sugar in the form of a math problem A LOT)  

How much active insulin do you have? 

What do you mean your site just "kind of" fell off?

Did you bolus? Are you sure?

How many carbs is that you're shoveling into your face? 

Mom, I'm just "tired" tired, not "low" tired. You can put the glucagon away.

Did you measure/weigh that?

Did you eat a snack before p.e.? 

Mom if I send you a picture of the cookies my friend brought into class for his birthday can you tell me how many carbs are in them?

When did we do your site change? 

Did you test before you ate? At the 2 hour mark? At all since you've been awake?!?

How come we have 20 boxes of lancets and only 2 boxes of test strips? 

How many units do you have left in your pump?

How do your used test strips jump out of the trash can that you "threw them away" in and end up every where but the trash can?

Did you wash your hands? 

Mom you forgot to put the amount of carbs in my lunchbox.

Give me your finger.

Please don't bury yourself under every stuffed animal you own at night because you think it's funny to play "hide and seek" when I come in to test you at 3 am.

There is a lot of quantity time but it's sorely lacking in quality.

So yesterday afternoon when I heard my child announce to the world that he wants to be a chef while making his gourmet grilled cheese sandwhich, I had an idea.

Shocking I know.

Since a significant part of our income is spent on medical expenses, I've been trying to do whatever I can to stretch our meager budget to within an inch of it's almost nonexistent life. One such thing has been making our own bread.

This is where I had my light bulb moment. I was already going to be baking bread that afternoon, why not have my chef in the making help me.

He eagerly gathered all of the ingredients together as I rattled them off.

Bread making ingredients? Check.
Measuring cups? Check.
Measuring spoons? Check.
Mixing bowls, pans, non-stick spray? Yes mom I have everything. (Imagine the, I'm smarter than you give me credit for look here. You know the one.)

We proceeded to spend the better part of the afternoon together. Me teaching him how to read a recipe, why we use yeast in bread, how to properly measure out ingredients, etc. And, Connor telling me about the project he's working on in science, who he plays with at recess, and about his favorite online game.

It was A-W-E-S-O-M-E.

I had almost forgotten what it was like to have a conversation with my child that didn't have any mention of diabetes.

He had a great time measuring everything himself. He mixed it all and even kneaded the dough and formed the loaves. I was reminded how amazingly cool my kid is and just how much I love his cute cheesy smile.

It's not often we get to see the fruits of our labors.

Yesterday however, we ate the fruit of our labor toasted, and topped with some homemade strawberry jam.

Now that's quality time!


P.S. I dream of a day where we live in a world that when I type the word glucagon, spell check doesn't yell at me with that red squiggly line telling me I'm wrong. Curse you spell check for making me second guess my tired almost non-functioning brain!

The ants go marching one by one hurrah hurrah......

This Saturday November 5th our family participated in our first JDRF Walk to Cure Diabetes.

I woke up Saturday morning a little anxious about how the day would go. The night before we got hit with a sudden storm. Lots of wind, and rain falling so loudly in the middle of the night that it managed to wake up all three of my children. All at different times thank you very much.

However, my anxiety was short lived. There weren't many clouds left in the sky. The previous nights storm had dropped the temperature by more than 20 degrees, with the days high expected to be 64. I was very thankful for the cooler weather.

Once we arrived, we pulled into the parking lot and waited for the rest of our family/team to join us. Nothing says good morning like the crisp cool fall air as it stings your cheeks. You could feel the excitement build with each new arrival. Some of our family members traveled a long distance to support Connor. (Thanks Danny, Sarah, Andrew, Molly, and Katy)

There were so many people there. Dare I say several thousands? All there for the same purpose, to walk/support/love the people in their lives affected by Type 1 diabetes. 

It was an amazing day. I don't feel like I can fully capture what I felt with words. 

Every step was unity....

Every step was support....

Every step was strength...

Every step was love...

At one point during the walk we had to take a brief break to allow others from our team to catch up. And our kids being kids took full advantage of this opportunity to roll down the hill. (I apologize if any of our kids ran into you/splashed you/or encouraged your children to engage in said hill rolling. Connor's Commandos are trend setters what can I say?)

Once the walk was completed I felt such a huge sense of accomplishment and purpose. As I looked around at fellow walkers and wondered were they walking for their child? Were they walking for a friend? Were they walking for someone they loved? I know we were all there to support different people but our stories were all the same. Each of our lives had been impacted by the same disease. Our daily lives had some sense of sameness.

Same insulin injections.

Same blood sugar testing.

Same fears.

Same worries.

Unified in the same strength.

Same courage.

 Same hope.

We spent the rest of the day laughing, playing, and enjoying each others company.

 Bounce house shenanigans

Thank you to our family and friends who supported our efforts this year. It means more to me than you could ever know. It's a cause that is so very tender to my heart, and I feel so blessed to have so many people in my life who support, love and encourage me everyday.

I look forward to next year, and every year until there is a cure.

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

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.

Ol' Blue in action

Yesterday we went to Cardon Children's Hospital for our second and last pump training class. 

Connor and I were both so excited. It was the day that ended his Multiple Daily Injections or MDI in the diabetic world. We went in and met once again with Martha our instructor for the day. 

We went over the procedures for the next few days and then proceeded to get out all of Connor's pump supplies. This last week Connor has been connected to his pump but no insulin was put in it only saline. This allowed us to be able to learn how to use the pump with out fear of "messing something up." Yesterday was different. Yesterday we went "live." All insulin all the time.

Tools of the trade (Insulin Pen, Alcohol Swabs, Reservoir, Infusion Set)

We calculated how much insulin would be required for the next 2-3days, filled the reservoir (thing on right side of picture that looks like a syringe) then uncoiled the tubing from the infusion set (blue disc shaped object in lower middle of picture) and locked everything in place. Adjusted all the settings and then attached the site to Connor. 

As of 10:15 yesterday morning Connor's external pancreas (his insulin pump) was fully functional. 

The next several minutes were spent on showing me how to do different functions using the pump. Things to watch out for procedures to to follow. We talked about our kids. Martha has a 16 year old son who is also a type 1 diabetic and is currently using an insulin pump. As we chatted Connor sat across the room coloring a picture. When the time came I gathered all of my paper work and his supplies. Connor finished up his drawing and handed it to Martha. It was a picture of Cardon Childrens Hospital and very well done I might add. 

The best part was the neatly printed words on the top of Connor's creation.

Written in his best hand writing were the words

"Never Give Up"

 

As we drove away the reminder on his pump went off telling Connor to check his blood sugar. 176. Slightly out of his range Connor was able to give a correction dose (a dose of insulin to help bring down blood sugar levels) using his pump. This level of control was not available to us using MDI. Using an insulin pen we dealt in doses using whole units. With the pump we can give Connor a dose of insulin as small as 0.025 of a unit allowing him better control.

As we headed home I needed to stop at Costco so we decided that we would eat lunch there. Connor got a hot dog and a drink. Entered the carbs into his pump. The pump calculated his insulin dosage. Connor hit the ACT button and started eating. No alcohol swabs. No pen needle. No flicking air bubbles out of the pen. No people staring at me strangely as I inject my child. Holy cow this is AWESOME!

After Connor was done inhaling his hot dog he quickly informed me that he was still hungry and wanted another one. We proceeded to repeat the above mentioned process still with the same amount of awesomeness. 

So if you're keeping score that's Ol' Blue (the pump) 3 - Injections 0

and that was only in the first 2 hours.

Later in the afternoon once my other 2 children were home from school they all wanted a snack. This time Connor didn't flinch one bit about having a snack. Before his decision was based on whether or not he was willing to take another shot and not on whether or not he was hungry. This time he didn't even have to think about it. He was hungry so he ate.

This process was repeated as he ate dinner and again with a snack before bed.

8:00pm came and we got excited all over again when we remembered that Connor no longer had to take his long acting insulin (given everyday at 8:00pm to help maintain his levels all day) This process has now been taken over by Ol' Blue. Ol' Blue gives Connor small doses of insulin throughout the day to maintain his blood sugar, no longer requiring him to take his daily dose of Levimer.

When I checked his blood sugar at 3 am (I do this almost daily at midnight and 3 am to prevent lows/highs to keep him safe) the meter read 242. Too high. I grabbed his pump which had already calculated the correction dose and pressed ACT. His pump was quickly at work lowering his blood sugar while Connor was sound asleep. Once again I was deeply thankful for Ol' Blue because I didn't have to give a shot to my sleeping child.

Total score for the first day?

Ol' Blue 8 - Injections 0

I would call that a huge success!

With the pump hopefully now we will see less of this

4 months worth of syringes, pen needles, and lancets (used to test blood sugar)

and more of this

That sweet genuine smile that has been long absent from his cute face.

Ol' Blue is not a cure it's just another way to manage the disease that is with Connor 24/7/365. What Ol' Blue is, is the freedom to be a kid. To be able to push a button and go. It's less painful and can keep him healthier because of tighter control.

It is also a visual reminder of everyone that helped us get to where we are right now. We wouldn't have had a day like today with out your help. It's a blessing. It's a miracle. It's hope.

It's also a reminder to, in the words of Connor,

"Never Give Up!"