As Beat the Bridge 2008 approaches the word cure is thrown around a lot. In the last 3 years every prayer, ever birthday wish, every penny thrown in a fountain has been asking for a cure. Our hopes have been raised by some research and shattered by other findings. This study seems different somehow. For some reason this one feels more real. For the first time in a long time I am allowing myself to imagine Sáin’s life without diabetes. Just imagine – it would be amazing!
Tuesday, February 26, 2008
Sáin started to feel sick yesterday evening. I knew she was really sick when she didn’t finish her homework. (I feel blessed that she is the type of kid that loves school and homework is usually something she looks forward to.) By 6:00 she was asleep on the couch and by 8:00 she was back in bed. As sick days go this is far from the worst. No vomiting, no ketones, highs in the 200s and no real fever. Sáin seems to have gotten the respiratory virus making its way around the
In the last year Sáin’s asthma has gotten significantly worse. She’s now on daily medication and an inhaler. Between diabetes supplies and asthma supplies, traveling and customs are a lot of fun. I can’t wait for international customs in May! (Thank God for all encompassing travel letters from Children’s!)
Thursday, February 21, 2008
Tuesday, February 19, 2008
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 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!
Friday, February 15, 2008
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
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.”)
Tuesday, February 12, 2008
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.
Friday, February 8, 2008
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: