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.
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!)
No comments:
Post a Comment