Friday, September 08, 2006

Feeling klempy

(note: I got the word "klempy" from Lyrecha. It is Yiddish for teary. Being a good ol' southern girl, I had never heard this word before, but I like it and it describes my mood perfectly.)

I have put off writing the post for a few days because I needed to get my emotions in check before writing it. I have been very klempy lately. Ever since Riley's diagnosis I have had times when I would tear up here and there, but usually I get out a good cry and it's over. But, this weepy time has lasted a little longer.

While I was in the car between patients yesterday, I started to analyze why I've been so down lately. Riley's sugars have been good (with the exception of yesterday). Work is going well. My family is healthy and happy. Life is good. So, what is wrong with me?

I think it comes down to a couple of things. First, the walk. I am organizing this walk all by myself. I've emailed, literally, hundreds of people. I've had meetings with people. The last meeting was with a marketing director at the local hospital, who was very helpful. But, the stress of organizing the walk is not what's getting to me. I can handle the stress. I think what's bothering me is having diabetes on my mind 24/7.

You would think I have diabetes on my mind 24/7 anyway. I don't. I used to in the beginning, But, now sometimes I'm almost on auto pilot. As much as I wish it wasn't , diabetes has just become a part of my life. But, to think about the walk, I have to think about a cure. That is what the walk is all about anyway. And, while I am very hopeful of a cure in the near future, I know that there may never be one.

Of course, I've been aware of this from the very beginning. As I've said before, in the beginning I didn't really believe there would ever be a cure anyway. But, to constantly be reminded every day that all of this could be for naught, has kind of worn on me.

The money from the walk is not just going to The Iacocca Foundation. The Iacocca Foundation funds many research projects. But, the money from Walk of Hope is earmarked to go only to the Nathan-Faustman Project. I really believe in Faustman's research. But, by putting my eggs all in one basket, I may just be setting myself up for heartache later if her human trials don't work. But, on the other hand, she needs $11 million for her research. Right now, she has $9 million. But, they've started their human clinical trials now in hopes that the rest of the money will come later. While I know if she starts showing some success more money will poor in, I keep thinking that what if they are in the middle of some very promising research and they run out of money. That would just be horrible.

I am mainly doing this walk because I want to be able to tell Riley I did what I could to help make a cure happen. Like I told my mom the other day, if I just sat back and waited for a cure and that cure never came, I would feel like it was partly my fault because I didn't do what I should. But, by putting the money into one project, if that project fails, I'll feel like what I did was all in vain. Yet, at the same time, I feel compelled to put the money there. I don't usually second guess myself. I don't know what's wrong with me.

While the walk and the thought of a cure (or lack of one), is weighing on me, it is not the sole reason for all of my emotions as of late.

Riley's anniversary is 4 weeks away. I remember early on saying I would not do anything to commemorate that day. I felt like it would be like the anniversary of the death of a loved one. While you remember that loved one on that day and think of how you miss them, it doesn't consume your day. Well, almost a year later, I am commemorating that day in a way. Riley's anniversary is Oct 6th. The walk is Oct 7th. I wanted to do something positive. What is more positive than raising money to find a cure?

It's not the date that is bothering me as much as the fact that Riley has lived with this disease for almost a year. For some reason that really hits me hard. I didn't really know why until a couple of nights ago.

I was lying in bed with my head on Michael's chest. As I was lying there I started thinking about how I remember things as before diabetes and after diabetes. I don't have the best memory when it comes to when things happened. So, when something is mentioned that happened last year, I think "Was that before Riley had D or after?".

But, as I'm lying there it hit me that I only have a few weeks before I won't be able to say, "Last year when Riley didn't have diabetes" For some reason, that's very painful for me. That's when the tears started, softly, at first, just enough to let Michael know by the wetness falling on his chest. But, then it was the sobbing that I did so often in the beginning of this disease.

I think it's almost like when you lose a loved one and your scared you'll forget what they looked like or how their voice sounded. I'm scared I won't remember life before diabetes. I won't remember Riley without his pump. I won't remember going to a birthday party and not carefully eyeballing his piece of cake. I won't remember watching him run around and around without wondering if I should decrease his basal.

But, what hurts the most, is I know Riley will not remember life like that. He was 3 when this stupid disease invaded his body. He will have no memory of the day when he didn't wear a pump or check his sugar. Sometimes I think it might be a good thing he got it so early. I guess you can't miss what you don't remember. But, it hurts that he may never know what it's like to not have diabetes as a part of his life.

So, that's why I've been down for the last few days. But, I really am feeling better now. While I was in the car analyzing why I was feeling like I do, I was listening to a CD that I hadn't listened to in a while. I had turned it down to call my mom to check on how Riley was doing. When I turned it back up a song was on that I usually skip over. It's not one of my favorites. But, the chorus was on and it caught my attention. It reminded me that even though I don't know what the future might bring, I do know that we'lll be OK. It gave me the peace that I needed to go on.

Lord (I Don't Know) by Newsboys
You are the author of knowledge
You can redeem what's been done
You hold the present and all that's to come
Until Your everlasting kingdom
Chorus: Lord, I don't know where all this is going
Or how it all works out
Lead me to peace that is past understanding
A peace beyond all doubt
You are the God of tomorrow
Turning the darkness to dawn
Lifting the hopeless with hope to go on
You are the rock of all salvation
Oh, Lord you are the author
Redeeming what's been done
You hold us in the present
And all that is to come

9 comments:

Scott K. Johnson said...

Hey Penny,

This is a great post, and I think you very nicely covered a whole bucket load of emotions and hopes and prayers and all that.

You said: "I am mainly doing this walk because I want to be able to tell Riley I did what I could to help make a cure happen"

I think that is very powerful - something that, once you are done with it, can feel very good about your work. That is powerful.

As a person who does not remember what life was like before diabetes, I can tell you that this is more of an issue for you than it is (or ever will be) for him.

He will grow up, doing everything he wants to do, dealing with the obstacles that are placed in front of him, and enjoying life. He will, at some point, probably wrestle with some of the mental things that many of us fight with, and work through the process of acceptance, and I'm sure that will also be terribly hard to watch - but it has to happen.

At the same time you will marvel at his strength and resilience - his ability to strive and achieve, to succeed and fail, and all the rest of things that happen in life.

I don't know if what I'm saying makes things any better for you, or possibly even worse - and if so, I'm sorry - I don't intend any "down" from this comment.

As always, if there is anything I can do for you - please don't hesitate to call on me.

Shannon said...

Penny, this post really hit home with me. I too am counting on Faustman's research to come through with successful results, but then I hold back thinking that it might not happen just so I won't feel so let down. But then I get my hopes up thinking that even if her research doesn't work, it might spark another aspect of a cure....so not all hope is lost.

And I too feel the need to contribute so that I won't feel like an opportunity passed by because of one less contribution (sort of like every vote counts when it comes to an election).

I don't know about you, but I think what Scott said is very reassuring :)

Keith said...

Penny:

I'm with Scott on life before diabetes, I think it is a much bigger issue to you than Riley. Frankly, I'm glad they diagnosed it in me and got me straightened out. Even though it's been almost 38 yrs I can still remember how absolutely terrible I felt and how sick I was pre-dx.

I appreciate your efforts to raise money for Faustman's research. I wouldn't worry about the research team running out of money. If the first 9M worth of trials appears successful I think the other 2M will pour in.

Lyrehca said...

Very nice post... but the true word is actually "verklempt" or "ferklempt." (Klempy's just a hipster shortcut the Mister and I use). See http://www.urbandictionary.com/define.php?term=verklempt for more.

maryellen said...

Hi Penny -
*sigh* - know how you feel, really and truly I do. Sending you a big hug - - - - !
I dreaded Tom's 1st anniversary too - UNTIL I looked at pictures taken the months preceding the dx. (He was 2 1/2) Tommy looked like crap. Dark circles, pale, droopy... Then I looked at him a month after dx. You guessed it - he looked worlds better.
So - Tommy really had d. way before the actual dx of Feb. 27, 2004. And so did Riley before his dx.

So - what I did was on that day, we had a party. Seriously. A party. I had balloons all over his room when he woke up, and all near the table for breakfast. I tole him and John, his older bro ( he was 6 then) that ' one year ago today, we found out that Tom had d...." and that while we want it to go away, we are thankful that Tommy was OK.
And then we told them that we were proud of Tom for handing it so well, and for John who has been a great big brother. And - then we took them to toys r us and let them pick out a toy to celebrate.

It was empowering, really. It's like we flipped the bird to diabetes!

Lyrehca said...

And to add on, I completely agree with what Scott and Keith said. I am sure Riley will excel in his life, do what he wants to do, do great things no doubt, and diabetes will just be a part of it. Life will go on and like everyone else, he'll learn to adapt to the challenges life has brought and continues to bring him.

My mother was with me when I was diagnosed, 29 years ago, and pretty much managed my care entirely when I was a child. But today, if you ask her about me, I think she'll tell you she's proud of my professional and personal accomplisments. The diabetes, honestly, she has said that I handle it well, I'm very smart about it, and I haven't let it stop me in any way. Please take this the right way, but I hope you're saying the same things about your son in the years down the road as well.

Megan said...

Penny,

My one year anniversary is 3 weeks away. One thing I have learned in the last year is that diabetes is a very emotional disease whether it is going well.

Your post shows that, and you picked out a great song, and a personal favorite of mine that conveys that message well.

Penny said...

Scott and Keith: Thank you so much for your comments about remembering life before D. It has helped ease my mind a bit.

Lyrecha: I like the hipster short cut better. I just like saying it:-)

Shannon: I hope you and I are right about Faustman's research. I try to hold back a little, but if her human trials fail, I will be devastated.

maryellen: What a nice way to spend the day. I'm all for flipping the bird to D!!!

Megan: I wish you peace on your one year anniversary.

karondaray said...

I agree with everyone here. Diabetes ebbs and flows. We go thru the ups and downs. Becuase Damnit it never goes away. I go thru the times when i look at things ..pre-D and post -D. I think we always will. I just went thru both my kids dignoses aniversaries, aug 5th and aug 19th. It does get easier, it does i swear. 2 years and 3 years for my kids. I promise it does