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."

"Why?"

"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".

9 comments:

Nicole P said...

Smart kid. Still. It's not that bad; it doesn't stop him - but boy, if we could make it go away, wouldn't that be something?

Scott K. Johnson said...

Very touching post Penny - thank you.

George said...

That prayer always sort of bothered me. We taught our kids, "Now I lay me down to sleep, I pray the Lord my soul to keep. Guide me through the starry night and wake me with the sunshine bright."

And yes, he is a definitely a smart kid.

k2 said...

Great kid, great family,
Pain in the ass disease!

He deals, you deal,we all deal with diabetes day to day.
But that doesn't mean we wish it would go away!

Pardon me, I'm on rhyme thing today.
I have no ideal why.
WTF?
k2

k2 said...

OK-
what I meant to write was:
He deals, you deal,we all deal with diabetes day to day.
But that doesn't that we want it to stay!

I'm an idiot and I think my blood sugar is dropping!!!!!

k2 said...

OK, "But that doesn't mean that we want it to stay.
Ok - I need some OJ - RIGHT NOW
SORRY, Im blowing like a 62.
k2

Emily Makes Six said...

Penny,
I have tears in my eyes as I read your post. What a special and very bright little boy you have We have had some similar conversations recently in our house as well.

We think that we are out of our honeymoon stage as our sugars are a little "crazier" than they have been and as you know it can wreck havoc on a mom's nerves. Of course we are still in the learning stage of this disease but I glean so much from your tender and informative posts...Thanks!

Caught up with you tonight and glad to hear that you are enjoying your time off. Best of luck to you on your upcoming exam.
Love,
Nichole

bethy said...

HI,
Just wanted to know if you welcome walkers from Atlanta. Short of starting my own walk, I can't seem to locate any fundraising for Faustman in my area! I'd love to get my daugher, Amalia who is 5 now, in the walks so she can be part of it, but would rather do your walk for hope rather than the jdrf one. Let me know, it could be a fun road trip for my family. ejelrod@yahoo.com

Penny said...

Bethy,

Can you send me your email address?

(pennylane5001@embarqmail.com)

Thanks.