Saturday, July 26, 2008

I'm Home and a Change in Plans

I just got in the door from the mission trip. It was awesome. I'm way too tired to blog about it now so I'll just say that it was a blessing.

I just wanted to let everyone know that I have decided that the money donated to Walk of Hope this year will be given directly to Dr. Faustman's research rather than going through The Iacocca Foundation.

I didn't want to mislead anyone. I will post a link in the next couple of days so if anyone would like to donate they can.

Friday, July 18, 2008

Maybe One Day

(This post was actually written a little after midnight. I am just posting it now.)

Riley had an endo appointment today. Everything went OK. But, his A1C has gone up from 7.2 to 7.4. It's not that much of a difference but every time it goes up my heart sinks a little. I feel like I've fallen down on my job.

Dr. M always asks Riley questions. This time she quizzed him on what a low feels like and what he does when his sugar is low. He passed with flying colors. Then she asked, "Is there anything that you would like to do that you feel like you can't do because of diabetes? " Riley shook his head "no".

"Smart kid", she said. I nodded my head in agreement.

Even with his A1C at 7.4 the only changes she made was to decrease his basal at bedtime because I've been running a temp basal a lot at night lately. She said that if that works and I want to try to tweak the A1C then I could slowly start to increase his basals over time to see if that helps.

At the end of the appointment she asked Michael and I if there was anything we weren't doing because of diabetes. We both answered no.

I've learned some things from my smart little man.

Tonight, he taught me another important lesson: never give up hope.

I've been debating about whether or not to have a walk this year. I didn't think I had the strength, the drive. It's stressful and overwhelming and I thought I might just skip it all this year. It brings up emotions in me that I really don't want to deal with.

Since school got out Riley has gone to sleep every night on the couch with his head in my lap. It will be a hard habit to break once school does resume.

We have a nightly bedtime routine. Every night he brushes his teeth and uses the rest room. He tells Michael and Holden goodnight. Then, he goes in his room and gets his pillow off of his bed and an old sleeping bag. He lays his pillow in my lap and lies down and waits for me to wrap him up with the sleeping bag.

He says his prayers: "Now I lay me down to sleep. I pray the Lord my soul to keep. And, if I die before I wake, I pray the Lord my soul to take." Haunting words, really, if you think about them.

Then, I kiss him on his forehead and tell him I love him.

"I love you too Mom"

Me: "Sweet dreams. I'll see you in the morning."

"Sweet dreams. I'll see you in the morning too."

Then, within minutes he's usually asleep.

Tonight after our usual routine he looked up at me and said, "If I had three wishes you know what I'd wish for?" (I'm not sure what has brought up all these wishes lately.)

"I'd wish that Daddy would always be alright. And, that Mama would always be alright."

"That leaves one more wish", I said, holding my breath.

"For my third wish I'd wish that I didn't have diabetes anymore."

It took me a moment to say anything. I had to catch my breath.

"A few days ago you said it wasn't that bad. What changed?"

"I don't know. I just wish it would go away."


"I....I... because....I don't know why. I just want it gone."

"Me too baby. Me too."

"But, first there will have to be a cure that makes my pancreas make insulin again."

"Yes. Maybe one day, OK?"

He nodded his head and closed his eyes. Within seconds he was fast asleep.

The third annual Walk of Hope will be held on October 6, 2008, Riley's 3 year anniversary.

If you'd like to help my baby's wish come true please click here or on the link in my sidebar. Under designation be sure to type in "Walk of Hope". All proceeds will go directly to Dr. Denise Faustman's research at Mass General Hospital (via The Iacocca Foundation).

Thank you for helping us get one step closer to "one day".

Wednesday, July 16, 2008

How Much Life Has Changed Since Diagnosis

Every couple of months or so we get a newsletter in the mail from the medical center where we got pump training. It has upcoming events in it as well as some personal stories.

One story in particular stood out for me. It was written by the mom of a girl that started college last year. She was diagnosed with Type 1 diabetes when she was 15 years old.

She spoke of how much life had changed since the diagnosis. But, not really in the way you would think. She didn't talk about how the insulin injections, the carb counting, or the lows and highs had made an impact.

She spoke of the change in attitude since diagnosis. And, I found myself nodding my head as I read what she had to say.

Several months ago I wouldn't have understood. Several months ago I would only nod my head in agreement when I read of the pain and the tears. I could only relate to the heartache brought on by this diagnosis.

I remember the first couple of years after Riley was diagnosed I would read posts or comments by other parents talking about how they were happy and content. They spoke of how diabetes was just a small part of their life and I couldn't comprehend how that could be.

Don't get me wrong, I wasn't walking around depressed or anything. But, was I totally happy? No. It was like piece of my heart ached continuously for my child because of a disease that had invaded his body.

But, one day, around the two year mark of his diagnosis, it's like a fog lifted. It was like the song lyrics "I can see clearly now. The rain is gone."

I became truly happy. I decided that life was going to go on no matter what and I had a choice if I wanted to be miserable or content.

I chose content.

That doesn't mean that I've given up on a cure. It doesn't mean that I'm happy that my child has diabetes. It means I've come to realize that life is what it is and you can make the best of it or not.

Now, I can nod my head when parents talk about the pain and tears because I remember all too well the many, many nights spent crying, praying, pleading because of diabetes. But, I can nod my head too when they speak of how happy they are.

What has helped me is that I've learned a lot over the last 2 1/2 years. There is still a lot I don't know and a lot I will never understand about this disease.

But, I've learned that ice cream and pizza require a combo bolus. I've learned that a temp basal can be your best friend. I've learned that someone else besides myself can take care of Riley and he'll be OK.

Most importantly I've learned that diabetes doesn't have to rule your life for you to effectively deal with it. There was a time when I wouldn't read a book or look at anything else on the Internet unless it had something to do with diabetes. It wasn't that long ago that I felt guilty if I didn't analyze every sugar.

And, when I first gained my old happiness back, I had a brief time where I felt like I was a bad mother because I didn't focus on diabetes like I once did. I was afraid that since I didn't become upset by every high and every low that I wouldn't take care of Riley as well as I once had.

I really don't know how to describe it. It was a mixture of fear and guilt. Fear, because I thought I'd stop caring about diabetes. I felt like if I could put diabetes in the background that maybe I wouldn't give it the attention that it needed. Guilt, because I wanted to be "normal" again. I wanted a life that didn't revolve around finger pricks and basals.

But, over time, the fear and guilt subsided. I've learned to see every single day with my children as a blessing from God. Insulin is a blessing. Being able to afford a pump is a blessing.

But, mostly, having a happy, healthy little boy is my blessing.

I know that my attitude about diabetes can shape how Riley looks at things. I have learned to only be positive when it comes to diabetes. But, I must say, Riley does a better job of it than me.

A few weeks ago Riley asked me if I had one wish what I would wish for. I asked him what he would wish for.

"The bestest video game in the world."

"Hmmm" , I said. "I'd wish that you were cured of diabetes."

He just looked at me.

"Wouldn't you like that too?"

"No. Having diabetes isn't that bad. I kind of like it. I'd rather have a video game."

And, with that, he walked out of the room leaving me with a huge grin on my face.

My son is awesome. Diabetes is only a very small part of his life.

And that makes me very, very happy.

Wednesday, July 09, 2008

I'll Get Around To It

I have been enjoying my time off.

I've spent a few days at a local beach club just lying on the beach.

Michael puts up pools and cleans a couple of pools during the summer. He's been really busy so sometimes I go to work with him just so I can spend time with him.

My house is the cleanest it's been in a while.

My pocket book has been cleaned out, twice.

My check book is balanced.

My email gets checked several times a day.

I've taken Riley to the park a couple of times.

I've beaten Guitar Hero Aerosmith and played all of the extra songs.

My laundry hamper is empty.

But, I haven't studied for my certification exam. I pick up the book to study and I think of something else I should do.

I decided that today I would straighten up a little in the morning and spend the rest of the day studying.

Instead, I've checked my email. Then, I got stuck on youtube for a while. And, now, I'm writing a post.

After writing the post I'm going to shower and then go to the grocery store. Then, I'll wash some dishes and clean the bathroom. I'll probably straighten up my room later too.

I'll get around to studying sometime. Really I will.

Thursday, July 03, 2008

40th Wedding Anniversary

My mom and dad were married 40 years ago today.

They were married the summer before my mom's senior year of high school. One year later, in the summer of '69, my dad was drafted into the army.

While he was in basic training in Alabama my mom received a call that he was deathly ill. "Come quick if you want to see him alive." She was driven to Alabama not knowing if my dad would be alive or dead when she arrived.

Obviously, he survived. After he got well he was shipped off to Vietnam.

I can only imagine how sad my mom was during that time and I can only painfully imagine the things my dad had to endure at the tender age of 19.

When my parents got married they wanted to have 6 children. They tried for years to have children to no avail. Finally, five years after they were married, they had me.

They tried for several more years to have more children. At the age of 27 my mom had to have a hysterectomy. Instead of 6 children they ended up with just one.

Over the last forty years there have been a lot of ups and downs.

They've lived through an unwed pregnancy of their teenage daughter, death of 3 parents, and countless other sorrows.

They've seen that same daughter marry a wonderful man and have enjoyed the birth of two grand babies.

My parents were 17 and 18 years old when they married. The odds were stacked against them. But, yet, 40 years later they are still going strong.

I've learned a lot from them over the years. I'm so glad God picked them to be my parents.

Happy anniversary, Mom and Dad.

I love you!!