Cured

I remember the two saddest days of my life since Arden's diagnosis very vividly. They came at a very inopportune time. It was six months after Arden's diagnosis which was two months after I fooled myself into thinking that I had mastered type I diabetes. These days began strangely because Arden's blood sugar was eerily steady and a little on the low side. After breakfast her BG got significant low, almost as if she didn't need any insulin. She ate more to stop the BG fall. The food worked but there was no spike at all, which of course was strange. In the moments after I got her BG stabilized I thought, "maybe they were wrong and she doesn't have diabetes".

Having that thought, was the beginning of the longest, saddest two days that I've lived through since Arden's diagnosis. I knew enough about type I to be sure that I was wrong but everything that was happening said that the insulin wasn't necessary and it certainly seemed like she wasn't diabetic anymore. By the end of that day I wasn't giving injections for meals and I had to skip her pre-bedtime Levemir. I didn't sleep much that night, I was waiting up and testing. Waiting because I was sure that her BG was going to suddenly rise - but it never did. It just stayed between 90 and 107 all night.

This trend lasted through the next morning and then I did something that I knew I shouldn't, but had to do. I needed to tell someone that I thought Arden didn't have diabetes. I called my friend Adam who is also Arden's pediatrician. When Adam got on the phone I said something that I still remember to this day, "I'm about to say something that I know is wrong but I have to say it... I need you to set me straight and then I'll get off of the phone". Bewildered he asked me to proceed.

"Arden doesn't have diabetes. She hasn't needed insulin in over a day... is it possible that she was misdiagnosed?"

I knew that she was most likely experiencing a honeymoon period but I needed someone to tell me. With each moment that passed, I was convincing myself a little more that Arden didn't have diabetes. After a long pause Adam said, "no, she was not misdiagnosed, this is a honeymoon period... Arden has diabetes".

I thanked him, there was some awkward silence and then we said goodbye. I went into the bathroom and cried. The remainder of the day was emotionally excruciating, it felt like a cruel combination of every bad day that I had ever lived through.  Later that afternoon we ate dinner and Arden's blood glucose jumped to over 400. I actually felt better when it climbed so far, so fast. 

Today, after so many years of living with type I diabetes, I have seen countless anomalous days. Highs, lows, insulin resistance, sudden drops, more unexpected stuff then I could have ever imagined. I'll never know for sure what happened over those two days. What I can tell you for sure is that it's happened many times since then, including yesterday. Never again to the degree of those days (not needing any insulin) but there have been days when Arden only gets 15% of the insulin that she normally does and her BG never goes above 120.

Last night as we got ready for bed Arden's BG began to jump and then drop, I could see it on her DexCom and finger sticks confirmed what the CGM was saying. Arden's BG was 72 and then 125, then 93 and then 160. It was rolling up and down like a small boat on a very large ocean - this went on all night. The next morning things seemed to be back to normal but sometime around noon they went right back into that tiny boat. Lunch required much less insulin then we thought and then her BG hovered between 70 and 96 all afternoon. Never wanting to waste a day that Arden doesn't need insulin we went to dinner at the Hot Wok Cafe for Chinese. It was there as we looked over the menu that I did something that I've never done before...

I wrote this post to show how something that once seemed so terrible will one day feel very different. Today, we don't blink an eye when Arden doesn't need much insulin for a day or so. We refer to those days and their events with one word, "cured". Now when the cured days come I don't dream of a misdiagnosis or call Adam and I definitely don't go into a bathroom and cry. I just manage them as best that I can and get Arden a nice meal with a ton of carbs.

In my next blog post, I'll tell you how badly our meal at the Hot Wok Cafe went... I may call that post, 'Whisper Down the Lane' or perhaps 'Confusion at the Hot Wok Cafe'.

Switching from MDI to an insulin pump

This post is in response to the question that Melissa posed on 'Ask Me Anything'.

Hi Scott,

I was wondering how you felt when you got Arden's pump. Alison has been doing MDI since July 2010 and we just got her first pump yesterday.

I have to admit that I was really excited when the girls and I opened the box up. The little ones were excited to see the unit power up and hear the sounds it made and it was a really positive experience.

Once both girls were asleep in their beds, I took another quick look in the box. I was overcome with tears. I felt this enormous weight and sadness, almost like I did when we were coming to grips with Alison's diagnosis.

Just thought maybe others could share how they felt (excited, nervous, sad) about the changes in their child's lives. - Melissa

To answer your question simply... I was nervous beyond compare when we made the move to pumping. In my opinion switching brings up a lot of those old diagnosis feelings becasue it again challenges you to learn something foreign and learn it quick. That should be the definition of pressure, "figure this out or here's the list of bad things that'll happen to your child".

The long answer is this... In a few days we'll be celebrating Arden's third anniversary with her OmniPod insulin pump. I can remember getting more and more nervous as her pump start appointment approached. On the way home from the endo's office that day we stopped for lunch and I thought that I was going to cry right at the restaurant table. Switching from MDI to a pump instantly reduced me from a seasoned type I parent to a rookie. In that moment everything felt new and I was confusing myself with every move that I made. Basal, bolus, cannula... why did they have to rename stuff? What was wrong with long acting and short?

I just about fell apart... Then I looked over at Arden and she didn't care that everything was new. She was beaming, thrilled that the shots had ended... that's all she knew or cared about. I figured that if she could do it then so could I. So I took a deep breath and thought to myself, "bolus is the shot, basal is the long acting insulin, this is going to help her... lower A1c, no more shots... bolus is the shot - I can do this." A week later I felt like a pro again (I wasn't but at least I wasn't scared).

Melissa, I've been overwhelmed by a great many diabetes related moments. My best advice is that we have to go through these things so we can become the people that our children need. The first few years and the changes that come with them are our diabetes education. No one is going to be able to fully explain this disease to anyone else, we all have to live it to learn it, we have to suffer with it to master it.

One night as I was putting Arden to bed she asked me, "what am I going to do when I go to college", referring to overnight management. Poor kid, she's seven years old and she is concerned that she won't be able to be safe ten years from now. After I explained that by then she'd have a system just like mine, I went into the next room and cried. The trick is that I left my sadness in that room when I was finished. I choose to let those moments strengthen me. I considered them a hurdle crossed instead of another chink in my armor. I may be fooling myself but if I am... it's working.

Living this life demands that we get scared and even cry sometimes but always push on...

Congratulations on moving your little girl to insulin pumping, I hope and expect that it will be a wonderful addition to both of your lives! I know that my stress decreased significantly when the OmniPod came into our lives.

If anyone would like to share how changes in their child's care has affected them, please post your remarks after Melissa's at this link.

Great thanks to Melissa for sharing!

Arden's Day is the Wego Health 2011 Health Activist Award winner!

So excited... I'll post more later when my heart stops beating so fast.

What a wonderful surprise it was to be chosen from among so many deserving and wonderfully written health blogs. A day after learning that I won WEGO Health's 2011 Health Activist Award in the 'Advocating for Another' category, well,  I'm still a bit in shock. 

WEGO Health houses an amazing collection of communities and blogs about a sweeping range of medical issues. It's members offer advice and support to countless people that need it. If you or someone that you know is living with a medical condition and looking for community, I strongly suggest that you click on this link and see if there is a group tailored to your specific need - I bet that there is.

I want to thank WEGO, the independent judges and the type I diabetes community for embracing what I'm trying to do with this website. It was a genuine honor to be named as the winner in such a broad and powerful community of people. I'm proud of this site and the words that you'll find on it. Moreover, I'm happy beyond words that it helps people. Thank you all very much!

Arden's 504 plan for download

I pulled ideas from a number of sources when I wrote Arden's 504 plan. I found that there were good and useful ideas in a number of places on the internet but that most templates went (I thought) too far. I felt that they went into a level of detail that would be off-putting to the school district. Over a number of months I culled, wrote and edited a plan until I settled on the one that we use now. It covers Arden in all ways medically, scholastically and personally that I found necessary. Recently I was reminded that I promised to share the plan and never did. So let's take care of that right now.

Below are links to Word and Pages versions of Arden's 504 plan for type I diabetes, all names have been replaced with place holders, you should make changes where and when you see fit. Please know that the process of putting a 504 plan in place can be lengthy, requiring a number of meetings. Just like in any negotiation you will be asked to make concessions and you should ask for them. When in doubt of your rights, refer to the AFT (American Federation of Teacher's) document, 'The Medically Fragile Child', this pdf is full of information that you can and will need while making your way through the process... it's a bit like having the other team's play book and is quite helpful!

Arden's 504 Plan (Kindergarten -2nd) - download for Pages

Arden's 504 Plan (Kindergarten -2nd) - download for Word

The Medically Fragile Child - download PDF

I urge you to seek out the laws and guideline that exist in your state regarding your child's rights and what the state requires of your school. It's my experience that the school will try to get away with taking on as little responsibility as they can get away with. Being educated about what is required of the school makes it much simpler to get them to deliver. Think of it like this... When you are buying a car there is a number that the sales person can't go below, your offer doesn't need to be any more then that number. If you don't ask for the lowest price available, the salesperson isn't going to tell you that you offered too much. Knowing the laws and guideline is knowing the bottom line.

Please email or leave comments with any questions.

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I want to add that my blog should in no way be confused for legal or medical advice. These are no more then my experiences and I am sharing them with anyone who is interested in knowing how I put together a 504 plan for my child. Never take my advice without first checking with a professional.

I am a CareGiver

I had a fantastic conversation yesterday, during the phone call the person I was speaking with referred to Arden's Day as a Caregiver Blog. I'd never considered what kind of blog this was as I'm not the type to put things in categories or apply labels. Since that conversation, I've given a lot of thought to the phrase and as it turns out not only is this a caregiver blog but I'm a caregiver - and I always have been.

I was thirteen years old the day my father left us, I know for sure how old I was because he left on my birthday. He got up from the dinner table, went upstairs, took a shower, then he left and never came back. It was terrible, the first truly terrible thing that I can remember.

I am the oldest of three boys, my brother Brian is five years younger then I am and our brother Rob is five years younger then Brian. My mom only ever had a part-time job before that day but it turned into full-time work very soon. All of this left me at home with my younger brothers while my mom worked, I was also the only person in the house old enough to experience my mother's pain in a real way.

I've been a caregiver since July 12, 1984.

I don't think that the events of my life forced me to take on the role of caregiver as much as they led me to follow my natural instincts.. Truth be told, I was the only guy I knew that as a teenager talked about getting married and having children. When I was old enough to get a credit card I would buy things that I could afford to pay cash for so I could pay them back to build my credit. My family was of meager means and I always imagined that good credit would one day benefit me and the family that I envisioned. I was always planning to have a family and I want to thank my mother and my brothers for letting me practice on them!

Back when she was in college my wife Kelly (then girlfriend) fell on tough times with her family and things seemed bleak but I was there to support her. We were young and I imagine that her family doesn't understand to this day how we persevered and then flourished on our own at that age. What they didn't know then was that by the time I met their daughter I had been a parent for almost nine years. I'd lived through a divorce, being broke, I taught myself how to drive a car and a motorcycle, had difficult and demanding jobs, took care of a house, two children and a mother. Hell, I was the one that spoke to my brother's teachers if there was an issue at school. By the time I met Kelly I may have been chronologically twenty-one but spiritually, I was forty.

It was all building to something.

If you would have asked my on August 21, 2006 I would have told you that I'd seen it all and conquered most of it. I was proud of the life perspective that I had compiled and would have held up my ability to manage any situation against all comers - but that was August 21st.

In the early hours of 22nd Kelly and I were sitting at a red light on an abandoned road in Virginia, I never wanted a traffic light to stay red before in my life but I didn't want this one to change. We were on our way to a hospital having just self-diagnosed Arden as a type I diabetic with a meter that we bought at a pharmacy. The silence in that moment was so bereft of life, I'll never forget the pit in my stomach or how much I wanted someone else to be responsible. Talk about wanting to cry out "daddy", but I was daddy and I had been by then for twenty-two years. I summoned up every once of courage I had, opened my mouth and said to Kelly, “Arden has diabetes, I know you’re scared and sad, so am I but this is one these moments that we have to be strong for her”.  Kelly nodded, the light turned green and we didn’t talk about it again. Today as I write this I find myself wondering if I was talking to Kelly or to me...

That was five years ago and now I'm actually forty years old but at times I feel like I've lived ten lives. I have so many experience that keep me strong in the tough times and I am grateful for them all. Every painful moment, every day when there didn't seem to be an answer, every laugh and tear, triumph and failure. They all prepared me to be Arden's surrogate pancreas. If my dad didn't walk out, if Kelly didn't need me, if my mom wouldn't have cried, well, I don't know who I'd be today but because of those moments I am uniquely prepared to be a caregiver to a child with type I diabetes. 

Diabetes sneaks up on you some days in a way that levels you - just knocks you backwards. I know because it happens to me too. 

My advice is, take a deep breath, find your footing and keep going - and laugh whenever the opportunity presents.

Some may view being a caregiver as a negative or think that you don't have a life of your own but I can't think of a more important or noble thing to be and I wouldn't trade what I do for anything.

I'm a caregiver, a stay at home father and this is a blog about my life raising a child with type I.

Many thanks to the person who showed me that yesterday...

Follow @ArdensDay