" Not everything that counts can be counted. Not everything that can be counted counts."
Tuesday, July 31, 2007
Faces of Hope
The purpose of the presentation is to show those in attendance that this is not just about my son, but also the millions of others who deal with this disease on a daily basis. Also, that those affected by type 1 diabetes are all different sizes, colors, and ages.
I will be doing the presentation again this year at my walk. So, once again, I'm asking for your help.
If you would like to participate please email me a picture of you (or your child) along with whatever identifying information you are comfortable with sharing (name, age, age at diagnosis, where you live, any interest or hobbies)
And, if you participated last year and would like me to use the same picture and info this year please let me know. If I don't hear from you I won't use your picture again this year. And, if you don't remember if you sent me a picture or not last year ask me and I'll let you know.
I would love to have more than 20 people participate this year.
Email your pictures and info or any questions to: email@example.com
Wednesday, July 25, 2007
Sometimes it soars
Today I opened my email and found this. It's an update to the Diane Faustman trials. They are moving forward ahead of schedule. She has cured mice. And, I'm hoping she can cure my son.
Most of the time my hope is very grounded, but sometimes it soars.
(To donate to my walk click on the link in my side bar. Under "designation" type in Walk of Hope. All proceeds will go to The Iacocca Foundation, the main supporter of Dr. Faustman's trials.)
Friday, July 20, 2007
So, today, I thought I'd post something a little more upbeat.
Riley loves Spongebob Squarepants. He's seen every episode several times (as have I). He also has a Spongebob CD.
On that CD is a song that I say is the "when diabetes is cured song". When/if this disease is ever cured, this will be the song I listen to.
I can't listen to it without smiling. I hope it has the same effect on you.
Thursday, July 19, 2007
He swims. He runs. He laughs. He does all the things a normal 5 year old does.
Yep, sometimes I can fool myself into thinking everything is fine. I look to the future and see the awesome possibilities.
Then, we have a few days of high sugars, very stubborn sugars. I try not to let them get me down. But, they do. I worry about those highs and what they are doing to his body. Those are the times I look to the future and worry about complications.
Or, there are the little conversations that pop up from time to time. Like a month or so ago when Riley’s sugar was high. He is good at telling us he’s hypo, but he seems to not really notice when he’s high.
When we were trying to get him to recognize his lows we would ask him how he felt when he had them. He said his head felt funny. Eventually, he came to realize that when his head felt funny his sugar was low.
Michael was trying to do the same thing with Riley’s high sugar. He asked Riley how he felt. Riley responded with, “Kind of like I feel when I’m low.”
“What do you mean, it kind of feels the same?”
“I don’t know.”
There was a long pause and then Riley said, “Dad?”
“I wish you had diabetes.”
“Because then you’d know what it feels like and you wouldn’t have to ask me all the time.”
Or, just a few days ago Riley was talking with Michael again. I’m not sure exactly what the conversation was, but during the course of it, Riley said something to the effect of “when I’m older and don’t have diabetes anymore.”
What do you do with that? As a parent you don’t want to dash your child’s hope. But, you don’t want to give them false hope either.
How do you teach a 5 year old that it’s OK to hope for a cure, but not to expect one? It’s not easy.
It used to be his magic number was 10. He’d often say, “When I’m 10 I won’t have diabetes anymore.” I just hope he has a crystal ball that I don’t know about.
Yes, most of the time, I can fool myself. Most of the time I think things aren’t so bad.
But, not today, today I feel the weight of this disease bearing down on my child. Today I want to cry because I know the future won’t be easy for him. Today I want a cure more than I have in a long time.
Today, I’m tired of waiting. I'm tired of being postitive. I'm tired of being upbeat. I'm tired of my child having this disease.
I can't be positive. I can't be upbeat.
Not today. Maybe tomorrow.
But, not today.
Wednesday, July 11, 2007
I think, therefore I am...
Scott over at Scott's Diabetes Blog has bestowed upon me the "Thinking Blogger Award". (Started by ilka yoldas. Don't you just love that name?)
Thank you, Scott. I am honored.
In turn, I am to award it to 5 bloggers that make me think. I know some of these have already been awarded the honor by someone else, but this is supposed to go to the bloggers who make me think and these guys make me think. If you get the award twice consider it an honor times 2.
1) Scott: (No, I'm not just trying to kiss his butt since he awarded it to me.) I have been reading Scott's blog ever since I started blogging about 20 months ago. He is so very honest in his posts. He doesn't sugar coat anything (no pun intended). He just tells it like it is. And, by telling it like it is, it causes me to think about how Riley may feel about his D in the future or even now, for that matter.
2) Amy at Diabetes Mine: Anyone who has read this blog knows how informative it is. The topics she writes about have caused me to think about things in a way I may not have before. And, I know by some of the heated comments she generates, she causes many others to think as well.
3) Kassie at noncompliant: I just love reading Kassie's posts. She is another one who just tells it like it is. I love the sarcasm in her posts. She also gives me insight into what Riley's world might be like. Not in a sad way, but in a kick-butt kind of way.
4) Sandra at A Shot in the Dark: I have also been reading her blog ever since I started blogging. She is a very talented writer and I find myself hanging on the edge of my seat often when I read her posts. Since we are both mother's of kids with D, she causes me to think: "Yes, that's it. That's exactly how I feel too." She can describe my feelings exactly and do it more elegantly than I.
5) Tom at unbalancediabetic: He is a college student who is trying to balance living away from home, going to school, and diabetes. He gives me insight into what Riley's life may be like in a few years (well 13 to be exact, but I'm sure time will fly) when he goes away to college. There was a post a while back where he was having a low and he was up late at night waiting for the low to rise. He was on the phone with his mom at the time. And it just made me think "I can still be there for Riley, even if he's away." It gave me some comfort.
So, here's the deal, this is a tagged-only meme. You must be tagged by someone in order to participate. If any of the above bloggers choose to participate, they should:
1. Write a post with links to 5 blogs that make them think.
2. Email them to let them know they have been selected.
3. Link to my post so your readers can find the origin of your award.
4. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote.
Tuesday, July 10, 2007
I thought I'd pass it along to someone who I think rocks also.
I am in awe of the grace she shows in the midst of adversity. She has a son with D and a husband with MS, and a few other kids thrown in the mix. She gets down sometimes, but it's not long before she's right back on top again being the awesome mom and wife that she is.
Vivian, please pass this along to someone you think rocks also.
Some parents there have been living this disease through their child for years and then there are some that just learned of their child’s diagnosis less than a month ago.
These are the ones that really get to me. I can almost sense their sadness in the words they type. And, it brings me back to when all of this started for me.
It was only 20 months ago, but somehow it seems like it’s been a lifetime. Still, I can be brought right back to that doctor’s office and the look on his face when he told me that my son had diabetes. I remember going over to the hospital and feeling almost numb. I made phone calls to some people who were awaiting news of what was going on. I made those calls sitting on a bench outside of the pediatric ICU waiting room. I looked at those parents and remember thinking, “It could be so much worse.” Riley was in a regular room. He only spent one night in the hospital.
And, so, my journey began. I know diabetes will alter Riley’s path, shape him into the adult he will become. It has altered mine. And, it has changed me.
It has changed me for the better. I am much more appreciative of every day that I have with my children and family. The little things that used to bother me don’t bother me anymore. I am just thankful at the end of the day that no matter what has happened, my family is safe and sound asleep in their beds. That’s really all that matters. Everything else is just icing on the sugar-free cake.
Diabetes has not made me bitter or sad. It has made me a better person, a more compassionate person.
And, just like diabetes has strengthened me, I know it will do the same for Riley. He has faced things at his young age that many do not face in a lifetime. And, he has met every challenge head on with the most beautiful smile on his face.
He has yet to let diabetes limit him. And, I hope he never will.
I may be a little sad when another joins the ranks of parenting a child with D. I don’t wish this journey on anyone. But, I also know, that one day that parent will swell with just a little more pride than most when their child stands on the pitcher’s mound, or takes first in a swim meet, or blows the lids off of their grades.
And, even if they don’t pitch or take first in anything or even if their grades aren’t so great, they will still swell with pride, because they know their child is among an elite group. A group that faces obstacles and challenges every single day and yet they keep going.
I am not glad that Riley got D, but I read the posts of the adults with diabetes and I’m proud of him. I’m proud that if he had to join someone’s ranks, that he’s with them. I'm proud that one day he can stand with the Olivias, Brendons, Daniels, Josephs, Emmas, Danielles, and Charlies of the world and be proud of everything he has accomplished. Because what they accomplish will take a little more prowess and a little more strength than most.