So, I just got a call from Medtronic and in order to avoid going to collections I need to pay the HUGE balance on my account?
What?
Oh yes, it continues. It seems Aetna, after approving the CGM, hasn't paid ANY of the bills. Nice! Do they think I am made of money? Seriously, if I had the money to pay for these things, you know, the things that help keep my daughter healthy and alive, I wouldn't have to fight the insurance for them.
The other day Sain asked me if I hated anyone. I told her no but now I think that's changed.
Stupid people!
Tuesday, January 13, 2009
Wednesday, January 7, 2009
Are you sure yesterday wasn't Monday?
I woke up tired - more tired than normal. It felt like Monday despite the calendar assuring me it was Tuesday so I pushed on.
Everything took too long -- traffic was bad, the kids were slow getting ready, even my computer seemed lethargic. Time passed slowly.
9:00 the Simpson's Theme rang out from my phone. I jumped -- the ringer was set entirely too loud for a quiet office. I also jumped because a Simpson's ring at 9:00 means something's wrong. Sain was 499 - ugh! I knew we were pushing it going 4 days on the same infusion set but I was hoping it would last until the evening.
I had them do a correction.
By 10:30 the numbers were down but only a little bit so I was off for an early "lunch". I swung by the house 45 minutes after I left work thanks to traffic, grabbed supplies and headed down to the school. Sain met me in the health room, we did a site change, entered in a correction bolus along with her lunch bolus and I was on my way.
By karate that evening, Sain's numbers were looking better. I was relieved.
Fast forward to 10:00 pm. I hear the distinctive beep, beep, beep of Sain's pump. LOW BG. I check -- 62, juice (the blue juice she hates but that's all that was left) and retest (84 with one up arrow.)
11:47 pm -- beep, beep, beep. Test, juice, test.
2:03 am -- beep, beep, beep. Test, juice, test.
4:12 am -- beep, beep, beep. Test, juice, test.
By 6:15 she was good and stable -- 150 with no recollection of the "beepy" night we had. (side note, it's amazing how well diabetic kids can drink in their sleep!)
Everything took too long -- traffic was bad, the kids were slow getting ready, even my computer seemed lethargic. Time passed slowly.
9:00 the Simpson's Theme rang out from my phone. I jumped -- the ringer was set entirely too loud for a quiet office. I also jumped because a Simpson's ring at 9:00 means something's wrong. Sain was 499 - ugh! I knew we were pushing it going 4 days on the same infusion set but I was hoping it would last until the evening.
I had them do a correction.
By 10:30 the numbers were down but only a little bit so I was off for an early "lunch". I swung by the house 45 minutes after I left work thanks to traffic, grabbed supplies and headed down to the school. Sain met me in the health room, we did a site change, entered in a correction bolus along with her lunch bolus and I was on my way.
By karate that evening, Sain's numbers were looking better. I was relieved.
Fast forward to 10:00 pm. I hear the distinctive beep, beep, beep of Sain's pump. LOW BG. I check -- 62, juice (the blue juice she hates but that's all that was left) and retest (84 with one up arrow.)
11:47 pm -- beep, beep, beep. Test, juice, test.
2:03 am -- beep, beep, beep. Test, juice, test.
4:12 am -- beep, beep, beep. Test, juice, test.
By 6:15 she was good and stable -- 150 with no recollection of the "beepy" night we had. (side note, it's amazing how well diabetic kids can drink in their sleep!)
Monday, January 5, 2009
Please Help
With a change in government comes a change in FDA leadership. It is the hope of many in the diabetes community that the new leadership of the FDA will take the needs of the millions living with diabetes more seriously.
Many of you know our personal struggles in getting the technology needed to better manage this disease. Sadly, this struggle is not uncommon.
Please consider signing this petition. (The full wording is below.) Sain and the millions of children and adults living with this disease (and those taking care of them) thank you!
**********************************
We, the undersigned, appeal to the leadership of the U.S. Food and Drug Administration (FDA) to reduce barriers to innovation in diabetes treatment development, in the interest of public health.
The FDA's job is to protect the safety of patients in its use of drugs and medical devices and to advance public health by speeding innovations that make medicines and technology more effective, safer and more affordable. That is its mission.
But we believe the FDA has adopted a stance of excessive caution in its regulation of diabetes drugs and technology that is counter to its duty to serve patient needs.
Specifically, it has established new rules that will impair research and innovation into diabetes therapy. (A copy of the letter sent to manufacturers in November 2008 can be found at www.diatribe.us/fdaletter.)
This worries us. For example, new requirements for additional multi-year long-term outcome studies prior to approval for drugs with no cardiovascular signals will assuredly discourage research and innovation to the detriment of public health.
The need for improved treatments for the 24 million Americans with diabetes could not be clearer. Many of the drugs available now have tolerability issues [1]. Poorly controlled diabetes increases the risk of devastating long-term complications, including blindness, end-stage renal disease, amputation, and heart disease. Complications cost our country at least $58 billion per year [2] %u2013over twice of what is spent on technology and therapy annually [3].
Nearly 50 percent of patients in the US do not meet A1c goals [4] using current therapies and technologies. No therapy today stops diabetes from advancing. As patients are living longer with diabetes and therapies stop working, the need for new therapies increases. We need better technology and drugs that help slow or avoid long-term complications as well as more therapies that cause fewer side effects1 and last longer. And, despite the epidemic in the number of diabetic patients, no drugs are yet available that can prevent diabetes. Innovative, safe, and effective prevention is the key for people at risk and for cost savings to society.
Ironically, excessive regulatory hurdles ensure the continued use of the very drugs and devices that have proven ineffective for many patients.
There is no value in an ideal diabetes drug or device if the regulatory costs are so great that the product never makes it to market. Make rules reasonable.
Due to the very nature of the severity and prevalence of diabetes, the following leaders within the diabetes community, who have signed this petition, implore the FDA for the immediate creation of a Diabetes Advisory Council, whose goal would be to improve options for patients. This council would include practicing endocrinologists, diabetes educators and others communicating directly with patients. Our experience, focus, and keen awareness of the needs of the diabetes community would be an invaluable resource to the FDA as it faces the arduous process1 of evaluating new diabetes treatments. Our aim is to improve options for patients.
We urge the new FDA leadership to recognize the urgent need for more safe and effective treatment options for diabetes and to reduce barriers to innovation. More treatment options will benefit patients. The disease is progressive. Delays in the availability of new treatments will only result in tremendous cost to public health and the economy. Our recommendation can benefit patients without sacrificing their safety.
Please sign this petition and tell others about it. Make your voice heard!
Learn more about the issues here:
Problems at FDA prompting slowdowns in development - should patients accept this?
The FDA in Transition: Diabetes Treatment at Risk
The FDA Needs Your Input on Diabetes Medicines!
Petition sponsors:
Kelly Close: Editor, diaTribe
Manny Hernandez: President, Diabetes Hands Foundation; Founder, TuDiabetes
Amy Tenderich: Creator and Author, DiabetesMine
Allison Blass: Author, Lemonade Life
Jennifer Block, CDE: Stanford Medical Center, Stanford University
Nancy Bohannon, MD: Director of Clinical Research, CVD Risk Reduction Program, St. Luke%u2019s Hospital, San Francisco
Bruce Buckingham, MD: Professor of Pediatric Endocrinology, Stanford University
Stead Burwell: CEO, Alliance Health Networks, Inc.
Priscilla Call Essert: Author, My Life As A Pancreas
Gina Capone: Co-Founder, the Diabetes Talkfest Blog
Kitty Castellini: Founder, CEO, Producer and Host, Diabetes Living Today - Talk Radio
David Edelman: Co-Founder, Diabetes Daily
Steve Edelman, MD: Professor of Medicine, University of California, San Diego; Founder, Taking Control of Your Diabetes
Bernard Farrell: Author, the Diabetes Technology Blog
James S. Hirsch: Author, Cheating Destiny
Irl B. Hirsch, MD: Professor of Medicine, University of Washington
Lois Jovanovic, MD: CEO and Chief Scientific Officer, Sansum Diabetes Research Institute
Francine R. Kaufman, MD: Professor of Pediatrics, Keck School of Medicine, USC; Head, Center for Diabetes, Endocrinology and Metabolism, Childrens Hospital Los Angeles; former ADA President
Tom Karlya: Author, Diabetes Dad
Rebecca Killion: Diabetes advocate
David Mendosa: Diabetes Journalist
Kerri Morrone Sparling: Author, Six Until Me
Jenny Ruhl: Author, Blood Sugar 101
Lisa Shenson: Diabetes Parent & Advocate
Scott Strumello: Author, Scott's Web Log
Virginia Valentine, CNS, BC-ADM, CDE, CEO, Diabetes Network, Inc. Albuquerque, New Mexico
Notes:
[1] "Glycemic Durability of Rosiglitizone, Metformin, or Glyburide Therapy," New England Journal of Medicine, December 7, 2006. ADOPT, a four-year clinical trial of over 4,000 patients, was designed to test the how long diabetes therapies last. In this trial, 23% of those on sulfonylureas (SFUs) and 38% of those on metformin experienced nausea, diarrhea and/or vomiting from taking the drugs. 10% of those on TZDs, 11% on metformin, and 39% on SFUs experienced hypoglycemia. 7% and 14% of those on TZDs experienced weight gain and edema. 12% on women on TZDs experienced fractures. The trial also found that within five years of starting therapy, 15% of those on rosiglitizone (TZD), 21% on metformin, and 34% on glyburide (a sulfonylurea [SFU]) had fasting blood glucose over 180 (~ roughly equivalent to an 8% A1c), suggesting that even if patients could tolerate the therapy, it wouldn't last longer than a few years for many.
[2] "Economic Costs of Diabetes in the US in 2007," Diabetes Care, March 2008, page 13.
[3] "Economic Costs of Diabetes in the US in 2007," Diabetes Care, March 2008, page 13.
[4] "Is Glycemic Control Improving in US Adults?," Diabetes Care, January 2008, page 81.
Many of you know our personal struggles in getting the technology needed to better manage this disease. Sadly, this struggle is not uncommon.
Please consider signing this petition. (The full wording is below.) Sain and the millions of children and adults living with this disease (and those taking care of them) thank you!
**********************************
We, the undersigned, appeal to the leadership of the U.S. Food and Drug Administration (FDA) to reduce barriers to innovation in diabetes treatment development, in the interest of public health.
The FDA's job is to protect the safety of patients in its use of drugs and medical devices and to advance public health by speeding innovations that make medicines and technology more effective, safer and more affordable. That is its mission.
But we believe the FDA has adopted a stance of excessive caution in its regulation of diabetes drugs and technology that is counter to its duty to serve patient needs.
Specifically, it has established new rules that will impair research and innovation into diabetes therapy. (A copy of the letter sent to manufacturers in November 2008 can be found at www.diatribe.us/fdaletter.)
This worries us. For example, new requirements for additional multi-year long-term outcome studies prior to approval for drugs with no cardiovascular signals will assuredly discourage research and innovation to the detriment of public health.
The need for improved treatments for the 24 million Americans with diabetes could not be clearer. Many of the drugs available now have tolerability issues [1]. Poorly controlled diabetes increases the risk of devastating long-term complications, including blindness, end-stage renal disease, amputation, and heart disease. Complications cost our country at least $58 billion per year [2] %u2013over twice of what is spent on technology and therapy annually [3].
Nearly 50 percent of patients in the US do not meet A1c goals [4] using current therapies and technologies. No therapy today stops diabetes from advancing. As patients are living longer with diabetes and therapies stop working, the need for new therapies increases. We need better technology and drugs that help slow or avoid long-term complications as well as more therapies that cause fewer side effects1 and last longer. And, despite the epidemic in the number of diabetic patients, no drugs are yet available that can prevent diabetes. Innovative, safe, and effective prevention is the key for people at risk and for cost savings to society.
Ironically, excessive regulatory hurdles ensure the continued use of the very drugs and devices that have proven ineffective for many patients.
There is no value in an ideal diabetes drug or device if the regulatory costs are so great that the product never makes it to market. Make rules reasonable.
Due to the very nature of the severity and prevalence of diabetes, the following leaders within the diabetes community, who have signed this petition, implore the FDA for the immediate creation of a Diabetes Advisory Council, whose goal would be to improve options for patients. This council would include practicing endocrinologists, diabetes educators and others communicating directly with patients. Our experience, focus, and keen awareness of the needs of the diabetes community would be an invaluable resource to the FDA as it faces the arduous process1 of evaluating new diabetes treatments. Our aim is to improve options for patients.
We urge the new FDA leadership to recognize the urgent need for more safe and effective treatment options for diabetes and to reduce barriers to innovation. More treatment options will benefit patients. The disease is progressive. Delays in the availability of new treatments will only result in tremendous cost to public health and the economy. Our recommendation can benefit patients without sacrificing their safety.
Please sign this petition and tell others about it. Make your voice heard!
Learn more about the issues here:
Problems at FDA prompting slowdowns in development - should patients accept this?
The FDA in Transition: Diabetes Treatment at Risk
The FDA Needs Your Input on Diabetes Medicines!
Petition sponsors:
Kelly Close: Editor, diaTribe
Manny Hernandez: President, Diabetes Hands Foundation; Founder, TuDiabetes
Amy Tenderich: Creator and Author, DiabetesMine
Allison Blass: Author, Lemonade Life
Jennifer Block, CDE: Stanford Medical Center, Stanford University
Nancy Bohannon, MD: Director of Clinical Research, CVD Risk Reduction Program, St. Luke%u2019s Hospital, San Francisco
Bruce Buckingham, MD: Professor of Pediatric Endocrinology, Stanford University
Stead Burwell: CEO, Alliance Health Networks, Inc.
Priscilla Call Essert: Author, My Life As A Pancreas
Gina Capone: Co-Founder, the Diabetes Talkfest Blog
Kitty Castellini: Founder, CEO, Producer and Host, Diabetes Living Today - Talk Radio
David Edelman: Co-Founder, Diabetes Daily
Steve Edelman, MD: Professor of Medicine, University of California, San Diego; Founder, Taking Control of Your Diabetes
Bernard Farrell: Author, the Diabetes Technology Blog
James S. Hirsch: Author, Cheating Destiny
Irl B. Hirsch, MD: Professor of Medicine, University of Washington
Lois Jovanovic, MD: CEO and Chief Scientific Officer, Sansum Diabetes Research Institute
Francine R. Kaufman, MD: Professor of Pediatrics, Keck School of Medicine, USC; Head, Center for Diabetes, Endocrinology and Metabolism, Childrens Hospital Los Angeles; former ADA President
Tom Karlya: Author, Diabetes Dad
Rebecca Killion: Diabetes advocate
David Mendosa: Diabetes Journalist
Kerri Morrone Sparling: Author, Six Until Me
Jenny Ruhl: Author, Blood Sugar 101
Lisa Shenson: Diabetes Parent & Advocate
Scott Strumello: Author, Scott's Web Log
Virginia Valentine, CNS, BC-ADM, CDE, CEO, Diabetes Network, Inc. Albuquerque, New Mexico
Notes:
[1] "Glycemic Durability of Rosiglitizone, Metformin, or Glyburide Therapy," New England Journal of Medicine, December 7, 2006. ADOPT, a four-year clinical trial of over 4,000 patients, was designed to test the how long diabetes therapies last. In this trial, 23% of those on sulfonylureas (SFUs) and 38% of those on metformin experienced nausea, diarrhea and/or vomiting from taking the drugs. 10% of those on TZDs, 11% on metformin, and 39% on SFUs experienced hypoglycemia. 7% and 14% of those on TZDs experienced weight gain and edema. 12% on women on TZDs experienced fractures. The trial also found that within five years of starting therapy, 15% of those on rosiglitizone (TZD), 21% on metformin, and 34% on glyburide (a sulfonylurea [SFU]) had fasting blood glucose over 180 (~ roughly equivalent to an 8% A1c), suggesting that even if patients could tolerate the therapy, it wouldn't last longer than a few years for many.
[2] "Economic Costs of Diabetes in the US in 2007," Diabetes Care, March 2008, page 13.
[3] "Economic Costs of Diabetes in the US in 2007," Diabetes Care, March 2008, page 13.
[4] "Is Glycemic Control Improving in US Adults?," Diabetes Care, January 2008, page 81.
Friday, January 2, 2009
2008 Survey
Stolen from Kate's blog because I'm too preoccupied to come up with one on my own. (thus far 2009 appears to be the year of high blood sugars and moderate ketones - UGH!)
1. What did you do in 2008 that you’d never done before?
All things related to an insulin pump and CGM and I cried in front of a senator. (actually I was a blubbering mess trying to tell Sain's diagnosis story to a senator)
2. Did you keep your new year’s resolutions, and will you make more for next year?
I tend not to make resolutions
3. Did anyone close to you give birth?
Yes, one friend had a baby in May.
4. Did anyone close to you die?
No
5. What countries did you visit?
Canada and US
6. What would you like to have in 2009 that you lacked in 2008?
A cure
7. What dates from 2008 will remain etched upon your memory, and why?
24 January – Sáin started on her insulin pump
05 April – Three years with this disease
19 May – Finally back in Toronto (only for a week)
29 July – We found out about Gloria’s stroke
17 September – Approval for Sáin’s CGM
02 October – Sáin started on her CGM
8. What was your biggest achievement of the year?
Fighting and winning a CGM battle with two insurance companies
9. What was your biggest failure?
Missing too many events with good friends
10. Did you suffer illness or injury?
My hips are getting progressively worse (it’s hard for me to admit that) and, as always, I am the poster child for insomnia.
11. What was the best thing you bought?
Medtronic Paradigm 522 insulin pump (aka “Pumpy”)
12. Whose behavior merited celebration?
Sáin for being amazingly tough, Aidan for being Aidan, and my parents for being supportive.
13. Whose behavior made you appalled and depressed?
Most politicians and political commentators, Greedy insurance execs and people who only know ½ the story when making assumptions
14. Where did most of your money go?
Medical, tuition, gas, Diet Mountain Dew
15. What did you get really, really, really excited about?
CGM and the trip back to Toronto
16. What song will always remind you of 2008?
Any of the millions of kindergarten songs Aidan constantly sings
17. Compared to this time last year, are you:
a) happier or sadder? I think happier.
b) thinner or fatter? About the same.
c) richer or poorer? About the same.
18. What do you wish you’d done more of?
Sleep
19. What do you wish you’d done less of?
Wondering whether Mats Sundin would return to the Leafs. I think they are way better off without him. Good luck Canucks!
20. How did you spend Christmas?
At the Fairmont Hotel Vancouver with my kids – opening presents, going out for brunch, swimming and ordering room service while watching “Willy Wonka and the Chocolate Factory”
21. Did you fall in love in 2008?
I fell in love with Sáin’s pump and CGM but that’s probably now the love you’re wanting.
22. What was your favorite TV program?
Hockey Night in Canada and The Hour
23. Do you hate anyone now that you didn’t hate this time last year?
I’ve found hating is a waste of time and energy.
24. What was the best book you read?
“Heart and Soul” by Maeve Binchy
25. What was your greatest musical discovery?
The Fratelli’s (I like Brit Pop)
26. What did you want and get?
Pump and CGM
27. What did you want and not get?
A cure, winning mega millions ticket, a playoff berth for the Leafs (I really want a Stanley Cup but at this point I would be happy for some post season action.)
28. What was your favorite film of this year?
“Wall-e” and “Love Guru”
29. What did you do on your birthday, and how old were you?
I don’t celebrate my birthday so I worked and turned 36.
30. What one thing would have made your year immeasurably more satisfying?
A CURE
31. How would you describe your personal fashion concept in 2008?
Jeans and hoodies
32. What kept you sane?
Really? You’re assuming I’m sane? Sanity is something that checked out 05 April 2005!
33. Which celebrity/public figure did you fancy the most?
George Stroumboulopoulos
34. What political issue stirred you the most?
Healthcare and research funding
35. Who did you miss?
My sister
36. Who was the best new person you met?
Aiye (if you’re reading this – I really am glad we’ve met), other diabetic parents online, and the folks at the karate school
37. Tell us a valuable life lesson you learned in 2008.
It might be tiring caring for a diabetic child but it’s a heck of a lot better than the alternative.
38. Quote a song lyric that sums up your year.
I see seven towers
But I only see one way out
You’ve got to cry without weeping
Talk without speaking
Scream without raising your voice
1. What did you do in 2008 that you’d never done before?
All things related to an insulin pump and CGM and I cried in front of a senator. (actually I was a blubbering mess trying to tell Sain's diagnosis story to a senator)
2. Did you keep your new year’s resolutions, and will you make more for next year?
I tend not to make resolutions
3. Did anyone close to you give birth?
Yes, one friend had a baby in May.
4. Did anyone close to you die?
No
5. What countries did you visit?
Canada and US
6. What would you like to have in 2009 that you lacked in 2008?
A cure
7. What dates from 2008 will remain etched upon your memory, and why?
24 January – Sáin started on her insulin pump
05 April – Three years with this disease
19 May – Finally back in Toronto (only for a week)
29 July – We found out about Gloria’s stroke
17 September – Approval for Sáin’s CGM
02 October – Sáin started on her CGM
8. What was your biggest achievement of the year?
Fighting and winning a CGM battle with two insurance companies
9. What was your biggest failure?
Missing too many events with good friends
10. Did you suffer illness or injury?
My hips are getting progressively worse (it’s hard for me to admit that) and, as always, I am the poster child for insomnia.
11. What was the best thing you bought?
Medtronic Paradigm 522 insulin pump (aka “Pumpy”)
12. Whose behavior merited celebration?
Sáin for being amazingly tough, Aidan for being Aidan, and my parents for being supportive.
13. Whose behavior made you appalled and depressed?
Most politicians and political commentators, Greedy insurance execs and people who only know ½ the story when making assumptions
14. Where did most of your money go?
Medical, tuition, gas, Diet Mountain Dew
15. What did you get really, really, really excited about?
CGM and the trip back to Toronto
16. What song will always remind you of 2008?
Any of the millions of kindergarten songs Aidan constantly sings
17. Compared to this time last year, are you:
a) happier or sadder? I think happier.
b) thinner or fatter? About the same.
c) richer or poorer? About the same.
18. What do you wish you’d done more of?
Sleep
19. What do you wish you’d done less of?
Wondering whether Mats Sundin would return to the Leafs. I think they are way better off without him. Good luck Canucks!
20. How did you spend Christmas?
At the Fairmont Hotel Vancouver with my kids – opening presents, going out for brunch, swimming and ordering room service while watching “Willy Wonka and the Chocolate Factory”
21. Did you fall in love in 2008?
I fell in love with Sáin’s pump and CGM but that’s probably now the love you’re wanting.
22. What was your favorite TV program?
Hockey Night in Canada and The Hour
23. Do you hate anyone now that you didn’t hate this time last year?
I’ve found hating is a waste of time and energy.
24. What was the best book you read?
“Heart and Soul” by Maeve Binchy
25. What was your greatest musical discovery?
The Fratelli’s (I like Brit Pop)
26. What did you want and get?
Pump and CGM
27. What did you want and not get?
A cure, winning mega millions ticket, a playoff berth for the Leafs (I really want a Stanley Cup but at this point I would be happy for some post season action.)
28. What was your favorite film of this year?
“Wall-e” and “Love Guru”
29. What did you do on your birthday, and how old were you?
I don’t celebrate my birthday so I worked and turned 36.
30. What one thing would have made your year immeasurably more satisfying?
A CURE
31. How would you describe your personal fashion concept in 2008?
Jeans and hoodies
32. What kept you sane?
Really? You’re assuming I’m sane? Sanity is something that checked out 05 April 2005!
33. Which celebrity/public figure did you fancy the most?
George Stroumboulopoulos
34. What political issue stirred you the most?
Healthcare and research funding
35. Who did you miss?
My sister
36. Who was the best new person you met?
Aiye (if you’re reading this – I really am glad we’ve met), other diabetic parents online, and the folks at the karate school
37. Tell us a valuable life lesson you learned in 2008.
It might be tiring caring for a diabetic child but it’s a heck of a lot better than the alternative.
38. Quote a song lyric that sums up your year.
I see seven towers
But I only see one way out
You’ve got to cry without weeping
Talk without speaking
Scream without raising your voice
Tuesday, December 30, 2008
Difficult Questions
I can remember a time when life was much more black and white than it is now. Although I am certain I am a better person for my grasp of the many shades of grey, I long for the days of black and white, good and evil, right and wrong.
But those days will never come back.
There is something I long to blog about, something that has happened in our world, a twist in the plot, fork in the road (you choose the cliche), but it is not my story to write. So I will honor privacy out of respect for a little girl I hardly know.
Instead I will write this...
Caring for a diabetic child is hard. It is something that takes time and effort and a heck of a lot of sleepless nights. But we (the many parents of diabetic children) do it because the consequences of not doing it are unthinkable.
None of us asked for this challenge but it was one given to us. I don't get religious in my blog -- there are plenty of religious blogs out there already -- but I view taking care of Sain as something God trusted me to do and I take it very seriously.
Now comes the difficult question -- how do you respond to a child who realizes at the age of 9 that the right answer to a tough question is not the easy answer and that same answer is not what everyone wants to hear?
I responded with honesty.
In the last weeks I have repeatedly promised Sain I will always take care of her and work with the amazing people around us to provide all the best care for her. Thank you Mom and Dad for being my back up(and for promising me you will always put Sain's well-being before mine)and Thank you Children's Hospital for guiding me and for providing a safety net even if people can't understand it.
But those days will never come back.
There is something I long to blog about, something that has happened in our world, a twist in the plot, fork in the road (you choose the cliche), but it is not my story to write. So I will honor privacy out of respect for a little girl I hardly know.
Instead I will write this...
Caring for a diabetic child is hard. It is something that takes time and effort and a heck of a lot of sleepless nights. But we (the many parents of diabetic children) do it because the consequences of not doing it are unthinkable.
None of us asked for this challenge but it was one given to us. I don't get religious in my blog -- there are plenty of religious blogs out there already -- but I view taking care of Sain as something God trusted me to do and I take it very seriously.
Now comes the difficult question -- how do you respond to a child who realizes at the age of 9 that the right answer to a tough question is not the easy answer and that same answer is not what everyone wants to hear?
I responded with honesty.
In the last weeks I have repeatedly promised Sain I will always take care of her and work with the amazing people around us to provide all the best care for her. Thank you Mom and Dad for being my back up(and for promising me you will always put Sain's well-being before mine)and Thank you Children's Hospital for guiding me and for providing a safety net even if people can't understand it.
Monday, December 22, 2008
Kindergarten Christmas Play
Last Wednesday was the St. Anthony School KA Christmas Play. They did an amazing job!
If anyone doubts that Aidan is a ham -- check out the video. He's the shepherd in the red.
Have a Merry Christmas! Hopefully we are off to Vancouver tomorrow (as long as Amtrak will coorporate.)
If anyone doubts that Aidan is a ham -- check out the video. He's the shepherd in the red.
Have a Merry Christmas! Hopefully we are off to Vancouver tomorrow (as long as Amtrak will coorporate.)
Sunday, December 21, 2008
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