Tuesday, October 03, 2006

Sitting on the box

Walk of Hope is coming up this Saturday. In my quest to make this disease “real” to people who don’t know much about it, I will be doing a little education also. Because of this, I have been researching statistical information about Type 1. I know the incidence of it, but I also know how many die each year due to Type 1. It’s not put me in such a great place.

I try very hard to not think about what could happen to Riley because of this disease. I try to focus on the good things. He’s healthy. He’s happy. His A1C is in range for his age. But, when I read about the bad things, it’s very hard not to be scared.

Like I said, I’ve been researching statistics. I also received a packet of info in the mail from JDRF about an upcoming walk. In it were sample letters from parents that they had sent to family and friends soliciting donations. These letters shared what they go through on a daily basis. A couple of them recounted recent seizures their children had suffered due to low blood sugars. When Riley was first diagnosed, I worried about seizures a lot. But, as time went on and he had lows in the 30s without a seizure, I kind of just pushed it to the back of my mind. But, now reading about it has made me think about the fact that it could happen to him.

A month or so ago, Michael came home with the news of a sister of one of the students at his high school. She had died from Type 1 diabetes. She was 7 years old. The tears roll down my face as I write that. I can only imagine what the family went through and is going through. It could have been my baby. It could still happen to my baby.

I try to keep these thoughts at bay. Yes, Riley could die from this disease. After all, there is such a thing as dead in bed syndrome. Yes, Riley could have a seizure from a low. Yes, he could end up with kidney failure and blindness. All of these things are a possibility for him.

I feel like I’ve put all those things in a box and I’m sitting on the top of it. The bad things try to pop out every once in a while. It’s really hard sometimes keeping that lid closed. I feel like it is taking all my strength just to keep one of the bad things from coming out. And, every once in a while, I’m not strong enough to keep that lid closed. Sometimes one bad thing will pop out and I’ll quickly stuff it back in and slam the lid shut. Other times the whole box is overturned and it takes me longer to put all the bad things back in.

Eventually I get them back in and instead of sitting on the box to keep it closed, I lock it. I lock it and I keep the key close by. Because, if I learn of another bad thing, I will have to unlock it and throw it into the box too. But, whenever I do this there is always the risk of letting some of the bad stuff out and I end up sitting on the box again for a while.

Today, I'm sitting on the box. It’s one of the bad days. The bad things are struggling to break free and wreak havoc in my life. I’m trying so hard to keep them in. When I feel like they are about to get out, I push down a little harder.

I know I’ll eventually be OK. I know that eventually I will put the lock back on and tuck the key safely in my pocket, just in case.

And, I know, one day, I’m going to lock that box and throw away that key... forever.


Anonymous said...

Oh Penny. I am sorry you are in that bad place. Maybe we can all sit on the box together. Big hugs and lots of love!

bridgid said...

This seems much of where I was last week as we planned our "walk". There were things I didn't want to think about, but I was forced to. It seems we are caught in the middle; trying to convince ourselves and others that diabetics are capable of anything while trying to raise money for a much-needed cure. I had someone say to me, "If a diabetic can do anything with their life, why is a cure so important?"...??? (#%*!!)He is lucky I have so much self-control.

To top it off, we also had our first "diarhea" illness. For 3 days, all through the night,checking every hour, battling insulin, bs's, food intake and dehydration we were reminded to focus on the now. To get ourselves through the next hour...until the next check, the next injection, the next low/high blood sugar. And somehow...you do.

Each time you check, eat, exercise, give insulin, you are putting a small tack into the lid on your box. They add up, you keep the thoughts of complications at bay for just one more day. Everyone, diabetic or not, sits on a box of what-if's. We have been forced (or chosen) to confront those what-if's daily, maintain our sanity and move forward with life.

You are so very strong and dedicated, also human and will falter in your steps...therein lies the struggle and the purpose of our lives.

My thoughts to you that your day ends better than it began and that you are able to feel the accomplishment of "one more day".

P.S. Your walk is going to be awesome!

Anonymous said...

Your thoughts and feelings are completely understandable and warranted. Just know that you are a wonderful mother who is taking wonderful care of her children. You guys are obviously very strong and determined people. It is not fair that this disease has invaded your lives and I can't imagine the pain you must feel as a mother, but just by reading your entries I have a good feeling that even with the burden of diabetes, Riley is going to be o.k. and so will you.

You can place hope in that box today and know that one day the box will be empty and the hope will be replaced with the certainty of a bright future for you and your son without this disease.

Riley is lucky to have a mother like you. My prayers are with you.

Jamie said...

Count me in as sitting right beside you on that box. That is a great way of describing how things really are. I try not to think of the bad things that can happen - but every once in awhile it hits me how serious this disease really is. The fear is always there, but I do a good job of suppressing it for the most part. I wish we didn't have to live like this - our children, and us - I wish that box didn't exist.

Good luck on your walk this weekend. You are a wonderful person to be doing this, Penny! From me and my family - THANK YOU.

Kerri. said...

Oh Penny ... I'm thinking of you and I hope your walk is an enormous success this weekend.

I look forward to locking that box someday with you. Forever.

Anonymous said...

Penny, I read your post I hold so much of this inside of me as well. I have two children both with Type 1. I spend most of my nights with my husband checking every two hours to make sure blood sugars are in range. My son is 7 and my daughter is 8. Thank you for sharing your thoughts. I'm greatful my children have me just as I know Riley is for having you. May we all have a great time with family and friends for our Walk of Hope! PS I pray that God takes all of our keys!