Insulin Pumps, Senators and Hockey (Oh My!)

Last Thursday Sáin started her insulin pump. It is great so far and I know it will be even better once we get the numbers all worked out. I had noble ideas of being healthy and well rested for the pump start. Funny how things don’t work out the way you plan. The midnight and 3 am tests would be more palatable if I could just fall asleep in between them. I tend to get to bed around 11, wake up at midnight, get to sleep again by 1:30, up at 3 and I’m lucky if I get back to sleep before I get up at 4:30 for work. I can’t say it’s ideal but you do what you have to do. I find it strangely amusing when people tell me how tired they are – maybe I’m too tired to explain what real exhaustion is or maybe it’s just not important. Truly, all that’s important to me is keeping Sáin and Aidan happy and healthy.

About a week before Sáin’s pump start we got to meet with Senator Murray and the lead researchers at the Pacific Northwest Research Institute. I learned a number of things that day. The research is amazing and Senator Murray is very supportive of diabetes research funding. (She has a niece who is type 1 so she sees the day-to-day impact this disease has.) The thing that really stuck with me that day is that, even three years after diagnosis, I can’t tell our story without crying. I don’t like crying in front of strangers but the emotions are so raw. I would never wish this disease on any family but I often wish some of the other parents could know what it feels like to be told your 5 year old daughter was 12 hours from permanent brain damage or death. It puts a lot in perspective.

On to hockey... my dad once told me that, if I was being honest, I would write hockey as my religion on official forms. Hockey has gotten me through more tough times than I could name. It’s been my therapy and my distraction for as long as I can remember. I don’t know if the hockey gods knew I needed it or if Comcast just decided to do me a favor but for one week I have the NHL Center Ice free preview. You can write my feeling this event blog-worthy off to my sleep deprivation but if you really know me you will realize how much seeing the Leafs play (even if they lost) on a Tuesday night meant to me.

(The picture is of Sain and Aidan with Rufus, the JDRF bear, at the Seattle JDRF Outreach event on Sunday -- it was a lot of fun!)

There's so much...

There's so much I should blog about right now -- so much has happened, both good and bad in the last couple weeks. Sáin met with Senator Murray and researchers at PNRI; I should write pages on that. Sáin got her pump and we go in on Thursday for our pump start; that is such a huge deal for her. Beat the Bridge is coming up so quickly and Sáin’s First Communion is even sooner but all I can think about is 119 days until our trip back to Toronto. I will write about the other events soon – they are important. Right now I just miss breakfast at the Sunset Grill, I miss my Leafs, and I miss writing while sitting by Lake Ontario.

Letter to Diabetes

Some days this disease is easier to handle than others... today I am sick of it. Sain's blood sugars have been high all weekend and I couldn't send her to school today because I can't get her numbers under 400. (Luckily she doesn't have any ketones!) I am tired, emotionally and physically but mostly I am tired of this stupid disease. Therapists have you write letters to the people causing you pain so I thought I would write a quick note to diabetes:

Dear Diabetes,

I am tired of you. You invaded my daughter’s life when she was only 5 and turned her world upside-down. She did nothing to deserve you and now she hardly remembers life before you. You robbed her of her innocence and took away a portion of her carefree sparkle. I will never forgive you. They can tell me all they want that forgiveness is essential but you don’t deserve it. You made her the “diabetic kid” and you made her feel different. Every time anyone says something about food people turn and look at her – that is because of you. Because of you she now knows about heart disease, kidney disease and amputations. No 8 year old should have to know about such things. She shouldn’t watch the presidential debates to find out healthcare policies, she should be watching SpongeBob. Because of you my daughter knows what life expectancy is and that hers is 15 years shorter than her classmates. That is a cruel thing to do to a kid! You didn’t just alter my daughter’s life, you made my son scared of his own genetic history. I will never forgive you for that either. You made me “that” mom – you know the one. The one people point out when she picks up her kids, the one who demands to know what snacks people are bringing, the lady who yells at Medco and the person who has Premera on speed dial. When people want to know about Children’s Hospital they come to me – that’s all because of you. Because of you I haven’t really slept in nearly three years and I’m exhausted!

Good-hearted people tell me that you made my daughter stronger and more caring. She was strong and caring long before you came into our lives. We didn’t need you for that. Haven’t you caused enough pain for my daughter? Why can’t you just go away?

Merry Christmas!

So much has happened in the last couple weeks:

Sáin completed her pump saline trial on Saturday. She loved the pump and can’t wait until she gets her own pump in January. I wish she didn’t have to wait until January (she was hoping for a pump in her stocking) but I need to wait for my 2008 healthcare spending account money to become available. Pumps aren’t cheap! For the first time I am putting the highest contribution possible into my spending account. The tax savings are nice but I’m not really looking forward to seeing my first paycheck with the bigger deduction.

About a week and a half ago Sáin, Aidan and I went to see the Sound of Music. I was expecting your typical school production but I was thoroughly impressed by the performance. (Any production of the Sound of Music that can keep a 4 year old boy’s attention for 3 hours has to be good!) A couple things came from seeing the musical – Sáin would now like to try out for next year’s play, I discovered Aidan can yodel (who knew) and every shopping trip is now a musical. Sáin usually has the lead, Aidan is the director and I’m either the extras or the audience depending on what is needed. So far we have performed The Sound of Costco, The Sound of Safeway and have done a couple performances of The Sound of Target. I have to say, singing and dancing through the stores is a lot more fun than just shopping!

Christmas! The kids made out like bandits this year and we haven’t even gone to Grandma and Grandpa’s house yet. I think Sáin summed it up best last Sunday when we were driving home from my Aunt and Uncle’s house when she said, “I feel spoiled rotten!”

This year the kids learned that Christmas isn’t all about getting presents. Sáin’s school does monthly collections for the St. Vincent de Paul food bank and in December most classes do a clothes and toy drive. I wanted Sáin to see where the donations go so we volunteered to sort gifts and deliver food and gifts to a family that was unable to get to the Parish Hall. We spent a Thursday evening sorting gifts and delivered food and Christmas gifts to a mom and her 3 children the next Sunday. It was an eye opening experience especially for Sáin. The family we delivered to was so grateful and humble. You could tell it was very hard for the mom to ask for help. On our drive home I realized Sáin understood the lesson. “Compared to my classmates we’re poor but compared to the poor we are really rich.”

I will leave you with Aidan’s thoughts on Christmas – four is a great age:
- Next year Aidan hopes Jesus has his birthday party at Pump it Up rather than Christmas Mass. It would be way more fun.
- Aidan let me know that Santa is actually an angel who got bored in heaven because there weren’t enough toys. That’s why he can deliver toys so quickly and get in your house so easily. (I asked him if the elves were angels too… “Don’t be silly Mom, their just elves.”)
- Aidan is convinced Father Gary helps Santa somehow. He’s not too sure what role Father Gary plays but that’s why we always see him before church on Christmas Eve but then he has to go.

I hope you all have a wonderful Christmas!

Lighter Side of Diabetes

Sometimes all you can do is laugh at this disease. Here are a few of our lighter moments:

• When you ask Sáin how much food she wants she responds in carbs. (I asked her how many Nutter Butters she wanted in her lunch this morning and she responded “about 20 grams”)
• No one in our family says “I’m hungry” it’s always “I’m low”
• The other day I told Aidan he could get a candy while we were at Rite Aid. He ran back to the pharmacy and grabbed Glucose Tabs
• I learned first hand that Washington State Patrol is very understanding when you open your glove box to get your registration and the glove box is full of used syringes. (KIA of Renton is a little less understanding and makes you clean the syringes out of your car before they will work on it.)
• Awhile ago I had to give Sáin a corrective shot during church. It got some strange looks but that wasn’t the best part. When I got up to the front of the line for communion I noticed I still had the syringe in my hand. The look on the Eucharistic Minister’s face was priceless.
• Sáin is preparing for her first communion and she and Aidan have been debating whether or not Jesus is a “free food.”
• When I ask Sáin how her day was she starts rattling off her blood sugar numbers.
• When the nurse went to give Sáin her Chicken Pox vaccine booster this fall Sáin tried to grab the syringe from her. Sáin was a bit surprised that she did have to give herself her own shot.
• There’s nothing quite like the looks you get when you ask your 8 year old if they are high while you are out in public.
• Strangest place we’ve done a blood sugar test – in the middle of the Hannah Montana concert while Sáin was dancing and the lights were flashing. Even though Sáin felt low she wouldn’t stop dancing.
• Strangest place we’ve done an injection – when we were next in line at the US-Canada border. The Canadian agents were very understanding and even expedited our trip through customs.

Insulin Pump

We have our first insulin pump class today! Sáin already picked out which she wants; we will be going with the Medtronic Paradigm. (Sáin will be getting the crayon "skin" to make it more personal.) The insulin pump is not perfect but it’s the best treatment available. Eventually I hope she goes on the continuous glucose monitor for even tighter control but I’ll have to see what Premera covers on that since a 4-pack of the monitors runs over $200 and they are changed every couple days. It’s hard when you have to look at the costs of keeping your kid healthy. The insulin pump we’re looking at today is actually worth more than my car but complications scare me a lot more than the prospects of going broke or working multiple jobs to keep my kids healthy and well educated.

Siblings

When you watch Sáin and Aidan together it’s pretty obvious they love each other. Sure they fight and compete -- don’t all siblings? But there’s something special between those two. It’s been there since the beginning.

When I was on bed rest before Aidan was born, Sáin and I would watch Blue’s Clues together. She would get down near my stomach and give a play-by-play of what was happening on the show. “Aidan can’t see what’s going on yet and I don’t want him to feel left out.”

Last night I began to realize just how much Sáin loves her little brother. Sáin and I were playing a math game (part of her homework) and Aidan was playing on the computer. I must’ve looked up at Aidan with a worried look because Sáin stopped the game and said, “You’re worried about him, aren’t you?” I admitted to her that I was. Aidan’s been sick since Thanksgiving. I never told Sáin I was really worried because she got the flu the November before diagnosis and our doctors and researchers figure that is what triggered the autoimmune response that caused Sáin’s diabetes but she must’ve been thinking the same thing. She said to me, “I would give up my cure if it guaranteed Aidan would never get this disease.”

It was one of those moments where you have to choke back the tears and all you want to do is hug your kid. As a mom it made me proud; as a little sister it made me sad. My sister is hardly a sister to me anymore. I hope Sáin and Aidan have this forever.

(Aidan has been having a lot of “events” that seem to parallel the time leading up to Sáin’s diagnosis. I’m hoping I’m just being paranoid but with Aidan’s genetic predisposition to the disease I get worried about the similarities.)