Blindside vs. Knowing... Both Hurt
Thursday, February 26, 2009
Oldest Boy has type 1 diabetes. He was diagnosed 03.03.03 in the ER of Primary Children's Hospital in Salt Lake City, Utah, at the age of five. It was devastating, but we're thankful he's healthy and managing the disease responsibly.
Because of Oldest Boy's diagnosis it's not uncommon for me to check the blood sugar of Middle Boy, Toddler Child, Chris, me, and any other friend or family member. Usually... all is well.
Middle Boy gave us a scare almost three years ago with a blood sugar near 200. Normal is 80 to 120, roughly. I assumed type 1 had hit him, but it had not. Per a recommendation from Oldest Boy's endocrinologist, we discussed with Middle Boy participating in a clinical trial for relatives of people with type 1 diabetes. Middle Boy agreed to participate in a TrialNet Study [with our guidance, support, and input] after discovering his body is producing two of three autoantibodies that predict the onset of type 1 diabetes. We know the freight train is heading his way. It blindsided us with Oldest Boy. This time we see it coming. We can't change it's course, but we can brace emotionally for the impact.
Through the TrialNet Study, we've been monitoring Middle Boy's pancreas for two and a half years. He consents to biannual tests requiring an IV, fasting, and a few hours of mild discomfort to see how his pancreas is performing. We typically leave the hospital reminded that his pancreas is sputtering, but he remains diabetes free. Stressful? Yes. Does it provide valuable information to researchers, ultimately helping the diabetic community? Yes. Does Middle Boy choose to do this? Yes. He receives $50 each time he participates - from the Study. He also loves his brother and believes what he's doing will help people with diabetes and their future children and grandchildren. Not written as a prideful mother - it's the truth.
Wednesday was a test day. The preliminary results were bad. We've known for some time now that Middle Boy was standing in the path of the freight train. It's always seemed abstract - far away. It's getting closer. Faster. It's painful and sad.
He does not have type 1 diabetes... today, but his blood sugars indicate it's very close. Doctors have been wrong in the past. We hope and pray that Middle Boy will be the exception... the miracle. He has an appointment - as does his brother - with an endocrinologist in a couple of weeks. One of the benefits of watching the disease approach is Middle Boy might be able to get by on a small, daily, dose of insulin to give his healthy cells a break. It's possible he can avoid taking insulin with food for a longer period of time. We'll see.
The doctor who oversees the study reviewed Wednesday's results and explained the implications. We shared everything with Middle Boy, and called Chris who was home with Toddler Child. Middle Boy cried. His father and I cried. BUT, we all reminded ourselves that he does NOT have type 1 diabetes on THIS day.
Let's go out for lunch, buy some clothes at Old Navy, gawk at the Apple Store, hit Toys-R-Us so you can spend your $50, and let's get a milkshake at Ben and Jerry's. TODAY we don't have needles or insulin. This is good!
While eating lunch at his favorite Asian restaurant, Middle Boy broke several moments of silence saying, "Mom, I thought about some of the things you've said. I think you're right. [About simply enjoying today.] It's like what Helen Keller says about appreciating your senses. She says, *'Smell a flower today, like you might not smell it tomorrow'. That's what I'm going to do."
I said, "You're a bright boy... "
*NOTE: He remembered the gist of what Helen Keller wrote at the end of her essay Three Days to See.
I who am blind can give one hint to those who see - one
admonition to those who would make full use of the gift of
sight: Use your eyes as if tomorrow you would be stricken
blind. And the same method can be applied to other senses.
Hear the music of voices, the song of a bird, the mighty
strains of an orchestra, as if you would be stricken deaf
to-morrow. Touch each object you want to touch as if tomorrow
your tactile sense would fail. Smell the perfume of flowers,
taste with relish each morsel, as if tomorrow you could never
smell and taste again. Make the most of every sense; glory in
all the facets of pleasure and beauty which the world reveals
to you through the several means of contact which Nature
provides. But of all the senses, I am sure that sight must be
the most delightful.
Published in the Atlantic Monthly, January 1933.
Reader Comments (35)
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Deidre - Thanks, Kitten!
Anne - You're kind.
Robin - We'll graciously take any hugs, love, crossed things, and prayers. Gracias!
Mrs. D. - You might want to check out the TrialNet website I linked to in the post. Tell your brother about it too. Because you're the sibling of a person with type 1, I think you qualify for screening. If your brother has children, they would qualify too.
Toddler Child gets screened annually but thankfully he's not producing any of the autoantibodies. He'll receive annual screenings until he's 18 unless the autoantibodies appear. If they appear, we'll discuss his participation in Phase 2 - what Middle Boy is doing.
He's wonderful. They're all wonderful from what you've shared. Oh yeah, so are you and Chris. You should be so incredibly proud.
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Love,Claire
and, you are the COOLEST mom ever. (with the coolest kids.)
You have a wonderful family. I'm inspired by how close you are.
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Still, I do hope he's the exception.
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My thoughts are with you and the kids. Stay strong!
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Claire - I originally asked Middle Boy if I could take some pictures of his testing for my blog. He happily agreed. My intention was to demystify the procedure from beginning to end and encourage people to look into clinical trials. Because of the test results, the post went a different direction. Thank you for your sensitive and kinds words. Love, Chris
Vodka Mom - I love you too!
Samantha - Toddler Child is already the rebel! I hope to talk to you soon too. The boys leave for Arizona tomorrow (Saturday) and will be gone for about six days. I'll have a little more time...
Corbie - You're always so supportive Corbie. Thank you. It's completely a "before" and "after" feeling, although... he does NOT have diabetes on this day. You're right - celebrate each day that he doesn't. THANKS!
Kate Coveny Hood - Thank you.
Deb - He's doing great and it's life as usual at our house.
Tristan - You're nice. I feel a little silly because I wasn't fishing for compliments - at all. I hate those "pity me", or "look how great I am" posts. Truly not my intention. It just is what it is. Thanks though.
Lady Fi - Thanks. We're really doing just fine!
Jennifer - Thank you. We'll have to get together soon now that you live so close. Maybe over a piece of that fudge!
Henry - You're a sweet and kind dog. Mary says "hello".
I just submitted it to Five Star Friday.
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He is wise beyond his years, and you've led him there. Way to go, mom!
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Sending love and good thoughts.
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Let's get the mushy stuff out of the way first.
I cried. Not teary-eyed. Bawled. I can't even begin to imagine what it must be like. It IS like being caught between a rock and a hard place: whether or not you want to know ahead of time or getting blindsided. This world is a very wrong world indeed, if a child has to suffer.
My heart goes out to you and your brood. But I know that you are a wonderful family, and Middle Child is testament to all that. I admire his maturity, his tenacity, and the sheer gusto with which he embraces life and all it has to offer. He is the embodiment of "Carpe Diem". He does his internet-fairy-godmother proud.
Hugs and sniffs.
Now on to the rest of the show:
1. We have GOT to do something about the lighting in that hospital bed. It does Middle Boy's lovely features no justice (and wreaks havoc with the nice Nurse's... I'm sure she's an awesome caregiver but in DESPERATE need of Demigod-ification).
2. I will gladly stick my fingers out if you want to test me too. I just had my nails done.
3. Cherry Garcia. All I'm sayin.
Hugs!
PS: I know, I know. I haven't posted or written. I'm sorry, and verbal diarrhea will begin anew come 03.01.09. :)
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TysDaddy - You're nice. Thanks.
Pam - You're right about kids gaining wisdom and strength from difficulties. (Not that any of us with that for our kids.) As you know, the boys have been through some difficult (and unusual) things and do seem to have learned things I doubt they would have otherwise. Thank you for reminding me.
Mama Bird - We really are doing just fine. We're having milkshakes tonight! (and a little wine)
Michael - Bubble tea sounds fun! I don't know what it is, but sounds like something we would all enjoy!
Schmutzie - I'm very flattered - and humbled. Thank you! What a great site you've created. I'm thrilled to learn about it, let alone be included. Thank you again.
Jennifer H - Even your comments are beautiful. Thank you, Jennifer.
Jannie - I believe you, I really do. Thanks.
Pum'kin! - Oh, how I've missed you! Thank you for the wonderful, loving, witty and genuine comment. I read every word, multiple times. Can't wait for you to post. (I owe you an email - you know, about the *other* situation. The one you like to discuss and know so much about? More to come...)
Cherry Garcia, dear Pum'kin!
Jennifer - Oh, yes it will!
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Thank you for sharing, I'll check back often! And thank you for commenting over at my place - I appreciate it!