Would I really know what to do if life wasn’t crazy?

I think the honest answer to that question is no. My life has been crazy for far too many years for me to even know what “normal” is. Oddly enough that doesn’t bother me. I kind of like the craziness and I take a great deal of comfort in the fact that I can deal with pretty much anything life throws at me.

I had a coworker ask me today what my secret was. She was shocked by my answer. Poetry. I recite poems in my head when I am stressed. If I’ve read it, it’s in my database of poems and I pull them out when I’m stressed. But I have my favorites: “The Raven” or “Dream within a Dream” by Poe, “The Lady of Shalott” by Tennyson (“I am half sick of shadows” is where “halfshadow” comes from and I obviously like Tennyson since I named my cat after him) but the poem that gets me through the real low points is this:

IF

If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you
But make allowance for their doubting too,
If you can wait and not be tired by waiting,
Or being lied about, don't deal in lies,
Or being hated, don't give way to hating,
And yet don't look too good, nor talk too wise:

If you can dream--and not make dreams your master,
If you can think--and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build 'em up with worn-out tools:

If you can make one heap of all your winnings
And risk it all on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on!"

If you can talk with crowds and keep your virtue,
Or walk with kings--nor lose the common touch,
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much,
If you can fill the unforgiving minute
With sixty seconds' worth of distance run,
Yours is the Earth and everything that's in it,
And--which is more--you'll be a Man, my son!

--Rudyard Kipling

Diagnosis

Many people have asked me how Sáin was diagnosed. Here is our story:

Sáin was an extremely healthy baby and toddler. You might actually say she was freakishly healthy. Her first cold didn’t come until she was 18 months old. Even then it was just a little runny nose, nothing else.

In November 2004 Sáin got the flu for the very first time. There was nothing distinct about this flu; I think every kid in her preschool class got it. But Sáin never recovered from that flu. She started getting more tired and irritable but I didn’t think anything of it – Sáin was five and growing. I honestly thought that’s all it was.

As the early months of 2005 progressed, so did Sáin’s symptoms. Every kid’s symptoms are a little different but for Sáin there were some tell-tale signs. In the month of March Sáin dropped from over 40 to 34 pounds, slept whenever I would let her, never played or laughed, she could never get enough to drink and she was always going to the bathroom.

On 05 April I called the doctor. Looking at the symptoms now it seems I should’ve called earlier but I kept expecting her to improve. She didn’t. Our family doctor got Sáin in right away when I called and described the symptoms. He did one test and sent us right to Children’s Hospital. I remember asking if we could wait until the morning – it was 5:00 pm and the last thing I wanted to do was pack one kid up for Grandma and Grandpa’s and the other for a trip to the ER. I am grateful Dr. Molina said I couldn’t wait and I truly think I owe him my daughter’s life.

Aidan went to Grandma and Grandpa’s and Sáin went to Children’s Hospital. The only thing I remember about the drive was passing the Denny’s exit in Newcastle on 405 but I could tell you everything about the ER. It was packed that night. I could go into detail about the crying baby and the man who thought Sáin was getting preferential treatment. (His kid was there for a sore throat.) I remember the cat sticker Sáin got from the triage nurse and I remember the sticker they gave me identifying me as a mom. To this day I haven’t been able to watch “The Incredibles” because that’s the movie that was playing in the waiting room and it still, 3 years later, brings back too many emotions.

They got Sáin back right away (much to the dismay of the man whose kid had the sore throat.) This is the point when everything around me became fuzzy. It was like the effect you often see in photos where the center image is focused but nothing else is. Sáin was my focus; nothing else mattered. We had 4 interns and 2 nurses. They took blood and urine and immediately hooked Sáin up to 3 IVs. She was so scared; so was I but I did everything I could to calm her down. It seemed like hours but was probably only minutes when they all came back. “Hi, I’m Doctor Richards. I’m an Endocrinologist here at Children’s. Your daughter has Type 1 Diabetes Mellitus.” All I could say was, “okay.” I didn’t know how to respond because I didn’t really know what I was responding to.

Sáin had her first insulin shot at 9:47 pm on 05 April 2005. She cried. One of the interns told me Sáin was in DKA and 12 hours from permanent damage or death. I didn’t cry; I was in shock and I didn’t know what DKA was. I wish those letters still meant nothing to me.

By midnight they had a room ready for us. That was my first time in the Train Elevators and the first time I hear “Giraffe” referred to as a location. It was in the Train Elevator that I first promised Sáin I would find a cure and that was the first time she smiled in weeks.

We were in Children’s a week. Each day Sáin got better and better. She gained all the weight back, starting laughing again, and went back to being the great kid she is. I learned in a few days the things doctors get years to learn. Suddenly my daughter’s survival depended on me. It was (is) a scary feeling.

I guess diagnosis ends when you go home – then the challenge really begins. Life with a chronic disease – but that’s another story.

(All the researchers we’ve encountered feel whatever flu virus Sáin got in November 2004 triggered the autoimmune response causing her diabetes. The guilt I feel about not getting her a flu shot is overwhelming. The shot probably wouldn’t have stopped it but I can’t help wondering “what if.”)

Reminders

We try to live our lives as normally as possible. Sáin looks like a normal, healthy, active 8 year old and, most of the time that is what she is. It’s a story like this that reminds us what we’re up against. Diabetes is a chronic, deadly disease with no cure. Everything can change in a heartbeat. I pray for this family – I can’t imagine what they are going through.

Two Weeks and counting!

Sáin has been on the pump for 2 weeks. It’s been a bit of a roller coaster but seems to be settling down (a little.) I can definitely see how great it’s going to be once everything is properly calibrated – it’s getting to that point that is tough. Oddly enough I am functioning very well on 2 hours sleep a night. (Not sure what that says about me!)

Besides the pump, the highlight of the last week is finally getting a new camera. I got the Nikon P5100 because, truthfully, there is no way I can justify buying the D200 or D300. I fell in love with photography when I worked at Getty Images and really started taking pictures when Sáin got sick. Sometimes moments pass too quickly -- pictures help me remember the moments I might otherwise forget. I want to remember everything -- not just the good. Here are some of our new pictures:

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?