November is Diabetes Awareness Month

I am going to write about one small moment from each day in November as an attempt to shed some light on what living with diabetes is like for a family whose child has the disease. Each entry will be made to this post - they'll be longer then a tweet but short then a blog post.

Tuesday, November 1

I miss counted Arden's dinner carbohydrates sending her blood glucose soaring over 300. Kelly had to spend the evening trying to get it back in range. She was careful and caring, tired from a day of work and helping Arden with a school project. I was unable to help her because I was with our son at his sports practices. High BGs are stressful.

Wednesday, November 2 (1:00am)

Arden's blood glucose has fallen too far. The last bolus see received at 8pm ended up being too much. Her BG was now 57 and two hours of temp basal rates couldn't stop her slow decline. Kelly went to the kitchen for a juice box and then laid in bed next to Arden, I knelt on the floor at the opposite side of the bed holding the juice. We both tried to get the other to go to bed. I said, "Kel you have to get up early for work... you should go to bed, I can take care of Arden". Kelly replied, "I'm the one that gave her too much insulin, I'll wait with her". - We both waited until Arden was stable.

Thursday, November 3

Today I ramped up my diabetes advocacy x 1,000... I hope you all come along for the ride! All the details.

Friday, November 4

Wore something Blue for Blue Friday.

Saturday - Sunday

I seem to have taken the weekend off...

Monday, November 7

Watched Jay Cutler play for the Bears with Arden - Tweeted him after to say thank you for his transparency with his type I.

Tuesday, November 8

Spoke to a fellow blogger about ways to make her really great idea for awareness a reality!

Wednesday, November 9

We made a $75 donation to Broadway Cares / Equity Fights AIDS - Karma

Thursday, November 10

I entered into an agreement today that will significantly help one family that struggles with the cost associated with their child's insulin pumping. I will make the announcement on Monday November 14th, with all of the details.

Friday, November 11

Arden's DexCom is wearing blue for Blue Friday!

Saturday, November 12

Took the Big Blue Test - http://www.bigbluetest.org

Sunday, November 13

Spoke to a wonderful attorney about the Untitled Giving Project

World Diabetes Day

Announced that we will be giving a 3 year supply of infusion sets away to a child in need.

Tuesday, November 14

Vacuuming, cleaning, doing the laundry. If I don't get this stuff done Kelly will kill me and then I won't be able to be an advocate for diabetes any longer. So really... this is for the cause more then you know! :)

When diabetes throws you a curve... just go with it

My son Cole is a baseball player and we talk about different aspects of playing the game with some frequency. He's a good listener and he makes adjustments most times with ease. There is this one pitch that he struggles to hit, it's low and just a bit outside but is almost always called a strike. Cole won't swing at that pitch no matter how many times I assure him that he can reach it. I tell him all the time to, "just go with the it" but he resists.

Perhaps 'just go with it' is something you have to feel and not something another person can describe but I'm still going to try.

Managing your day-to-day stress as it relates to your child's type I diabetes is, if you can find a way to 'feel it', as easy as just going with it...

Arden's BG was pretty perfect Sunday evening when we changed her OmniPod, except for her basal she didn't get any insulin for the remainder of the evening. By midnight her BG had drifted up to around 180 so I delivered a small corrective bolus. An hour later her DexCom began to beep and indicated that her BG had risen above our high limit, which was odd because I definitely expected that the last bolus would bring her to 120 but instead she was more like 220.

Getting the idea that the last bolus wasn't making a dent in her number, I gave a little more and then waited two hours to see where we stood.

Two hours later was about 3 am and her BG had not moved, I knew now that we either had to push a large bolous and everything would be great or change the site and start over. I wanted to bolus big but at that time of morning I couldn't be sure that I'd be in any condition to act if she was suddenly 45 at 5 am so I gave another small correction and set an alarm for 6:30 (an hour and a half before Arden gets up for school).

When the alarm sounded I felt like I had sand in my eyes. I checked her CGM and saw the steadiest line you could imagine, steady but too high. I bolused this time for the full correction plus the 36 carbs that Arden would be eating for breakfast. I then literally thought, "that'll do it" as my head hit the pillow to get my last 45 minutes of broken sleep.

In the morning I got Cole off to school and went back upstairs to wake Arden whose BG I was sure was going to be in range and heading south just in time for breakfast. The rest went just like you think it did. Her BG was a little lower, falling but in no way was she feeling the full effect of that last bolus. The site needed to be moved.

In that instant my entire day changed.

Arden wasn't making the bus and I needed to wait out the last bolous before she could even eat. It was a mess but I didn't let the sudden upheaval of the day rattle me or Arden. I explained how our day changed so Arden wouldn't be flustered, we pulled out some books to read to help take her mind off of her hunger. I moved an appointment, slide a number of to-dos to the next day, emailed the nurse and her teacher and then refocused on my new goal for the day - getting everything back to normal and salvaging as much of Arden's school day as I could.

I realize that being a stay at home parent helps lessen some outside influences. I don't have a boss to report to so I can be flexible but it's not the mechanics of the day that I'm most proud of. I'm proud that when the pitch tailed away from me I didn't complain that it was a ball or that the ump was screwing me. In fact I didn't even wait for someone or something else to tell me what my reality was going to be.

I just went with it, I dictated what happened next.

There is a moment in almost every situation when you make a choice. You can dress it up anyway you like but in the end you decide how you feel and what you'll do next. If you go with it and just except that in this moment you took the best option available to you, well, I don't understand how you can be upset. We may not control the when or why in our lives but we sure can have our say in the how.

When my son learns to let go and swing at that low outside pitch he's going to miss a few, he'll foul off even more but once in a while he is going to drive that shitty pitch so far into right field that it'll make all the swings and misses very worthwhile.

Arden got to school at noon. Her BG was in range, she had breakfast and was ready to learn. We even got to spend some great time together. I did the best I could with the pitch I got.

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.

Follow @ArdensDay

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.

Promise Meeting 2011

I spent an hour this afternoon with a handful of wonderful people. We gathered in our Congressman's office to support the work that the JDRF does. I have to say that I believe these meetings are a significant tool in spreading support for type I diabetes amongst our lawmakers. I found our congressman to be engaged, interested and concerned but there was more to the meeting then just pleasantries, the congressman spoke about close relatives of his that have type I as well as his spouse being effected by other autoimmune disorders. He was very aware of studies, laws and pending bills that all have a great effect on your life and mine.

I left with a very positive feeling but most importantly I believe that he will tell the stories that we told him to others in Washington. 

I encourage you to sign up for a Promise meeting in your area, you'll be glad that you did!

Just click on http://jdrfpromise.org and you'll be signed up in no time!

I hope to have a photo from the event soon...

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