Thursday, October 29, 2009

All In Due Time

Four years ago I was at the worst point in my life ever. My 3 year old son had been diagnosed with Type 1 diabetes just 3 weeks prior. My days consisted of clock-watching and finger-poking. I never slept through the night. I would sit and stare at the numbers in Riley's log book for hours trying to figure out what to do about them. I would lock myself in the bathroom and cry and then sneak in Riley's room at night while he was sleeping and pray and cry some more.

I was miserable. I was inconsolable. My son had an incurable disease and I was helpless to do anything about it. I felt guilty. I felt guilty because I felt it was my fault he was going through all of this. I felt guilty because when he looked at me with his tear-filled I eyes I couldn't do anything but cry myself. I felt guilty because I didn't see it coming, didn't take him to the doctor sooner.

I couldn't think of anything but diabetes. My whole day revolved around carb counting and insulin dosing. I scoured the Internet and read everything I could about Type 1 diabetes. I read medical articles as well as postings from other moms of kids with T1.

I tried my hardest to put on a brave face for everyone, especially Riley. I did not want him to see the pain in my eyes. I refused to let him see me cry. I didn't want anyone in my family to see my struggles. I felt so weak. I knew I needed to suck it up and move on, to find happiness again, but I just didn't know how.

Five months into Riley's diagnosis he was placed on a pump. Those first 2-3 months after that were hell. I often wondered what we'd gotten ourselves into. But, after those first few months I fell in love with his pump. Still, it took me a while to get out of the MDI mentality, to figure out that Riley didn't need to be on a schedule. It took me a while to learn to decrease or increase the basal for certain situations. It took me a while to not cringe when I saw the tubing sticking out of the waistband of his pants.

Then, in October 2006, Riley's one year anniversary came and went. Those days leading up to it were heart-wrenching. I relived the pain of his diagnosis all over again. I was still grieving for my son on an almost daily basis. I didn't cry every day, but there wasn't a day that went by that I didn't think, "Why my son? Why does he have to go through this?"

Fast forward 3 years; fast forward through starting Kindergarten, the flu, numerous ear and sinus infections, birthday parties, starting sports, learning to check his own sugar and do his own insulin, explaining to others over and over again what type 1 diabetes is, knowing you have to live it to really understand.

There were more tears. But, the interval between the tears got longer and longer. The "whys" got less and less frequent and now that has stopped all together. The why just does not matter anymore. Tears, while I'm sure they are not gone for good, have slowed down to maybe a couple of episodes a year.

I hate to admit it, but I used to look at Riley and all I could think of were the things he couldn't do, how unfair life was. Now, those thoughts never cross my mind. There isn't anything he can't do. Some things may be harder for him, but life is like that in one way or another for everyone.

Fast forward 3 years and that brings you to where I am right now.

I hardly ever think of diabetes during the day any more, other than when I have to think of it. I still log sugars. I still pour over them from time to time. I spent about an hour last night analyzing sugars and figuring out what to do about them. Riley has been having a lot of lows lately. I made a carb change as well as a tiny basal change. Now, I have to wait and see if that helps. I still get occasional calls from school about Riley's sugar that forces me to think about it.

I remember early on in Riley's diagnosis wondering how on earth some of the moms whose blogs I read could be so happy. How could they just go on with their life like diabetes didn't bother them? I could not fathom ever getting to that point.

But, here I am right there. I now realize that diabetes did still bother those parents, they had just learned how to deal with it. It took me longer than some parents to get here. And, I know some parents who have children who were diagnosed before mine that haven't quite reached that point yet. We all have our processes we have to go through.

Tuesday, October 06, 2009

4 Years In

  • 14,600 finger pokes

  • 910 shots of insulin

  • 426 site changes

  • 3 blood draws

  • 1 very happy, healthy little boy who I love more than life itself

Friday, October 02, 2009

I want it so badly I can taste it

We met Dr. Benjamin, Riley’s new endo, last week. I was a little wary about the visit. We absolutely adored Dr. Morris and I knew there was no way we would find anyone else like her. I told Michael on the way to the appointment that as long as the doctor didn’t say we tested too much or that we shouldn’t test sugars in the middle of the night, then I’d be OK.

The first thing the doctor said, after introducing himself, was how awesome Dr. Morris was and that he actually trained under her when he first started. Then, he said how his philosophy was much like hers in that he was there to help us fit diabetes into Riley’s life and not Riley’s life into diabetes. That’s when I knew we’d be just fine.

All in all it was a very pleasant visit. Even though I thought Riley’s A1C would be decent I am always on pins and needles waiting for the result. After Dr. B gave his little spiel he said, “Riley’s A1C is awesome, by the way. Is it always in that range?”

“What range is that?”

“Well, it’s 7.2 today.”

(Yay!!!) I told him it was hovering around there for a while, but due to a bad school year last year we’d gotten up in the 7.8-7.9 range and worked hard to get it back down, with the last one being 7.4.

Dr. B then said that his goal for kids Riley’s age was 7.5, so he was very pleased with the 7.2.

Riley’s sugars have really been doing well lately. Of course, diabetes still lets me know who the boss is every now and then, but for the most part, everything has been going well.

I just opened up an email with an attachment of the newsletter from Riley’s school. There was an announcement in it about Walk of Hope which will be held on October 7 to raise money for a cure for Type 1 diabetes. (All proceeds will go to
Dr. Faustman’s awesome research going on at Mass General Hospital. Please go here to make a donation. If you do, please comment or email me and let me know. I’d love to add the total to the amount raised at the walk.)

As I read it my eyes filled up with tears and started to spill over onto my cheeks. It caught me completely off guard. It came out of nowhere.

Well, not out of nowhere, I guess. It came out of almost 4 whole years of worry, blood sugar tests, needles, highs, lows, carb counting, praying, crying….

Riley’s 4 year anniversary of his diagnosis is coming up on Tuesday. I don’t know why it gets to me every year, but it does.

October 6, 2005 will always be imprinted in my memory. It is the thought of that day, and knowing that right now, other parents (and their kids) are having a day just like that of their very own, that make me want a cure so badly I can taste it.

I used to be so sure that one day I would taste it for real. Now, I’m not so sure, but I’m not going to stop trying to make it happen. I will fight for a cure, until my very last breath. It’s the least I can do for Riley. I said this several years ago and I still mean it: I fight for a cure, because I don’t want Riley to ask me one day why I never tried to fix it. I want to be able to tell him that I tried my very best.

Although, in the back of my mind, I fear that my best is not good enough