Wednesday, November 09, 2005

Trying To Keep The Faith

Just last night, as I kissed my son goodnight and turned to walk out of his room, he stopped me.

"Mom, you know there's probably gonna be a cure before I'm Hartley's age, right? I mean, before I'm in middle school, don'tcha think?"

"Well, I know they're working really hard to make that happen, honey."

"But definitely before high school," Joseph said quietly, as he pulled his comforter up to his chin.

And as he closed his eyes, he said -- almost to himself, really -- "definitely by then."

"You bet, bud," I responded, the words catching in my throat.

Closing his door, I stood in the empty hallway, and let myself imagine for just a moment:
my son in high school without diabetes.


Without the pump, the finger pricks. The highs. And God, the lows.

No more fear of potential complications.

It really is almost unthinkable.

Damn!

I wondered if suddenly I had become one of those individuals I'd met early on-- diabetics and parents of diabetics who seemed to have given up hope that a cure would come in their lifetime.

I remember telling these people, enthusiastically, of Denise Faustman, and how she'd cured Type 1 in mice. And too often, the response would be a half smile, a "well, I was told 10 years ago that a cure was just around the corner." Looks that said "just wait, you'll see, you're just so new at this."

These exchanges always left me confused, frustrated, and, well, angry.

But there I was last night, feeling my own faith slipping -- faith that a cure might be found in time for my son. I can barely type the words without choking back tears.

That was last night, though-- when my son's life seemed as if it would be an unending string of blood sugar highs and lows.... with complications always looming.

When diabetes appeared to be an unbeatable foe-- a multi-billion dollar industry that pharmaceutical companies will never willingly surrender.

Yeah, last night really sucked.

But today, I woke up and thought again of Faustman, and of the countless others who walk, climb, and ride to raise money for a cure.

And I am hopeful, yet again.

Today, I will read many posts by diabetes bloggers -- posts that will no doubt make me laugh, cry, and, as always, sit in awe of the boundless strength of these people. And I will be reminded that my son will never be alone.

That, until a cure is found, he too will persevere.

21 comments:

Tekakwitha said...

Sandra,

Those moments are hard. Hopefully today will be better.

-Tek

gina said...

Don't forget today is D-blog Day!!!

Andrea said...

It really breaks my heart when I think about children, as little as babies, having to deal and manage this disease. Childhood is supposed to be a care-free, innocent, and fun time in life. I hate to hear that children are subjected to daily fingersticks, multiple injections, and also the fears of having lows or highs and complications. Children shouldn't have to worry about that stuff. They shouldn't have to worry about what they eat and how and when the food will affect them. These fears should be the last things they need worry about.

Yes, I hate that I have this disease, but I think it's a lot harder on children. Growing up and dealing with childhood issues, like fitting in, school, and family issues are enough, w/o throwing Diabetes into the mix.

I know they keep working on a cure and are making advaces in how to treat this disease. I admit, sometimes I doubt that there will ever be a cure, but I think you are right. We have to keep the faith that one day there will be. There's always hope.

Shannon said...

Sandra,
There are tons of people who have faith that Dr. Faustman has the cure. I'm confident that when Brendon is in college, the cure will be available...and I'm over estimating.

E said...

Sandra,

I always try to remember when I am a little low (and I am not talking about my sugar)that in some strange way the D has made me a better person. I think that I am more mature, compasionate, and stronger thanks to the D. It's the things that challenge us in life that really mean something in the end.

Keep the faith,
e.

Jamie said...

Sandra - I know how those moments feel. Some days I just take one look at my little girl and have to fight back the tears as well. I keep hearing how everyone is so confident that within her lifetime, she will be cured - I want to believe that so badly - SO BADLY - somedays its hard to even fathom. But, we must believe - we will have our days when we fall apart, but as you've done - we just pick ourselves back up and continue to support research and work hard to raise money for our children and all affected by this disease.

You are strong - Joseph is strong - and I believe, one day, Joseph will no longer live with this disease. And what a wonderful day that will be!

Martha O'Connor said...

Beautiful post, Sandra. I try not to think about the cure much these days, only because it is such an emotional thing to think about... getting rid of the meters, pumps, logbooks, etc., forever. I want it SO MUCH. Thinking about the fact that it is not available today or picturing the day when it does come is just too emotional.

I do try to keep raising money and to persevere in managing our son's condition day to day, and to keep abreast of technology. It's hard when our children ask about the cure because we don't know and can't give them a definite answer. We can only give them hope.

Kassie said...

There have been long stretches of my life with diabetes (19 years) where I have not allowed myself to hope for a cure. Of course, I always hope for health and wellness with - or without diabetes. I must confess that Faustmann's research has piqued my interest though!

Johnboy said...

In my opinion, we must manage the disease as if there will be no cure, but hold onto hope that there will be one. Keep the faith, Sandra!!

d double e said...

Sandra-
I believe-- I have to believe-- that a cure will be found in our lifetime.

We just got information on a study that is being performed in Florida on Type-1 kids whose parents preserved their cord blood. The study is being funded exclusively by JDRF and they would pay for us to go down there and do the study.

We probably arent going to participate, but for us, it was good reminder of ALL the work that is being done out there-- people who are working every single day to find a cure.

Its going to happen.

With regard to something Andrea said, my only frame of reference is our little girl, but she is the happiest girl you'll ever meet. She has diabetes, but she does every single thing that anyone else her age is doing. And she doesnt know the difference. It may be sad for us who do know the difference, but then, I ask, what is the difference?

OK Sandra, this is my longest comment I've ever posted anywhere. :)

Dee

Anonymous said...

I can't imagine how hard that was for you.

The faith of children is an amazing thing. They truly believe that all things are possible. As we grow and learn that faith tends to weaken, but as long as we don't let it break, we can still believe that miracles will happen.

Joseph sounds like a wonderful and strong boy who still truly believes that a cure will come soon. Let's believe with him...

Kerri. said...

I've been waiting for almost four "Five Years More" spans for that elusive cure. It's coming. It has to be. With people like those in this online community and organizations like the JDRF and Joslin, the cure can run, but it can't hide.

Because it will get low. And then we'll nab it.

Katdiego said...

We can only hope. It reminds me that the other day we were wishing on the first star that we saw that night, and all of us, my 8 yo daughter who has diabetes, my 5 yo son, and myself, all wished for a cure, seperatly and silently.

Keep the faith.

Kathy

ScW said...

Just like you... as parents of a child with diabetes we wish too. And while we try to follow cure work (we are friends with folks doing that previously mentioned work in Florida), we don't think about it much. Our concentration is on the day to day. We look forward to better care first and a possible cure beyond that.

But I'll admit that in the midst of that day to day stuff I still don't pray often enough for a cure.

wilcoxzone

Allison said...

When I was diagnosed, I asked the same question. I asked Dr. Hansen when there would be a cure every time I saw him. He was the only one I trusted because he never gave me a number, he just said "they're working on it, things look promising." I loved him for that.

When I was diagnosed, I doubled the 10 and thought "if we can have a cure by the time I'm 28, then I will have a cure before I have a baby." My mom had me when she was 30, so that was my frame of reference. I've always thought "if we can just have a cure before I'm a mom..." I don't know how parents with diabetes can raise children. It scares me. But a lot can happen to parents, besides diabetes, that interferes.

But I just remember what Dr. Hansen told me... "They're working on it. Things look promising."

And I always keep the dream alive.

christy214 said...

I believe there's a cure, but my husband says the same thing the Pharm companies won't surrender.
I pray every night that tomorrow will bring the cure. There will be, God only knows when. There's always HOPE!!

melissa said...

One of my clearest memories is of when I was 16 and in D.C. for the International Youth Leadership Conference hosted by ADA and one of the top reasearchers in attendance there looked me in the eye and said to me that there would be a cure within 10 years. I never forgot that. I felt personally slighted that what he said did not come true. You have to find a way to balance your hope for cure with the fact diabetes is here now & you have to take the best possible care of yourself or your child until that day comes.

Thanks Sandra, for visitng my blog. I enjoy yours especially reading from the persepctive of a parent.

Vivian said...

When the cure is given to us, we will collectively have the biggest party the world has ever seen. Sound like a plan?

Anonymous said...

... my daughter (dx 1/05 age 8) started this school year with this before-bed thought: she began third grade without diabetes .. now she was starting fourth grade with diabetes. What if the cure is found and she could end fourth grade without it? I said I don't think the cure will be that fast ... maybe you will be the person to discover the cure. Oh, no. says she. I can't wait that long. {sniff}
i know so many who have surpassed their self-imagined deadlines for "the cure". i recently met a woman who was dx in 1959. she would have her blood tested at the hospital on monday, then receive a call the following monday reporting that "you were 350 last monday". needless to say such lack of control resulted in severe complications. but the advances in care and insulin in the past 10-15 years have been extraordinary in improving her life. Even my friends whose kids were dx'd six years ago are jealous we have the humalog/lantus combo from the start.
so.
hurry cure, hurry.
but thank the industry for continuing to develop new insulins and delivery products.
love this community!

Sandra Miller said...

Thank you all for helping me regain the right perspective on all of this-- to stay focused on the present, and at the same time, still hopeful about the future.

Seems so basic. Yet putting it into practice, well, not always so.

Anyhow, thanks.

To echo the previous comment:
"love this community!"

Oh, and Vivian--
Sounds like a plan to me.

terrilynn said...

Today is the fourth anniversary of my son's diagnosis, so I've been thinking a lot about keeping hope alive in the midst of the day-to-day stuff we all have to do just to keep our children healthy. I had a long conversation with his pediatrician way back then and she said to me that she truly believed there would be a cure before Liam graduated college, which sounded like a lifetime away, but I have held on to that.