Shortly after I started blogging, I had someone tell me this:
"I just can't read your blog. It makes me too sad."
I wasn't sure how to respond to that.
Part of me felt like saying, "Oh, gee. I'm SO sorry my life is so depressing that you can't handle reading about it." I wanted to ask how, exactly, a comment like that was supposed to make me feel. I wanted to say, "Try LIVING it. I don't have the option to quit reading." I was not happy.
I didn't start a blog so that people all over the world could read about us and FEEL SORRY for us. That was not and is not the point. And if people are reading and that is what they're getting - then I'm doing something terribly wrong.
Because I don't want people to feel sorry for us. There is nothing to feel sorry about.
We have a great life. We have a wonderful, supportive family and friends. We have a wonderful school and teachers who truly LOVE Sweetpea and care for her like she's their own. We have a church that inspires us. We have jobs. We have health insurance. We have each other. We have LOVE.
And we also have diabetes.
The point has never been to make people feel sorry for us.
A facebook friend commented once that she didn't feel sorry for us but that she did FEEL FOR US. I thought that was perfect. I just want others to know what it's like. To know the battles we face. To understand the need for a cure.
That's why I blog. That's why I tell our story. AND - and this is a BIG AND - because I know that there are 40 new families every. single. day that enter this club. And through our story, they will see parts of their own. And they will not feel alone. They will know that others are out there. Getting up at night to check on their sleeping children. Worrying. Treating low and high blood sugar. Packing bags and bags of supplies before going places. Worrying. Counting carbs. Fighting for a safe educational environment. Piercing their child's flesh. Seeing their child's blood. Worrying.
It has helped me tremendously to read the stories of others and know I am not alone. I would have gone crazy long ago if I did not "know" others dealing with D. Even though many of them live in my computer, I still consider them friends. And they love and support and understand me. And I, in turn, try to do that for others.
United We Stand.
Then, last night, I read some tweets and a post call All There Is by Lee Ann at The Butter Compartment.
She said, "Such complex emotions to read about D kids. I'm sad for them, I'm sad for me, I worry they'll get cynical like me if they aren't cured. It pains me to read about the hope for a cure, and know if they don't get it, they might crash, like watching a car about to crash."
It made me think again of that person saying that my blog makes them sad.
Lee Ann is a adult with Type 1. I do not know her. I only know what she chooses to share on her blog. She is the creator of Diabetes Art Day - which we LOVED and loved participating in.
I value her opinion and views because she is a person dealing with T1. I don't know what it feels like. I treat the D. I fight the D. I think about the D constantly. But I don't know what it FEELS like. So the opinions and stories of adults living with D intrigue me.
This is a different spin on feeling sad for us.
And I so totally get what she's saying. How would I feel if I spent my life being told that a cure is right around the corner.... only to never see it come to pass? I might be very angry. I think it's likely that I would have some anger issues there. Some distrust. Some resentment. Now don't misunderstand, I'm not saying that Lee Ann does - just that I think that I would. It's understandable.
And I think it's an important thing to remember. To keep in mind. It's like telling your child that one day he or she will _______ (fill in the blank - get married, graduate from college, be a doctor, be the president... whatever) and then their life will be complete. Everything will be wonderful and all will be right with the world.
You're setting them up for failure by setting those expectations.
The same goes for the cure. If you approach it that way, then HOPE becomes dangerous. If that's how you set it up, then it IS like waiting for that car to crash.
But that's not how I approach HOPE.
I wrote a post about HOPE recently called First Words. Click to check it out.
I can not imagine living without HOPE.
I don't just HOPE for a cure for diabetes. I HOPE for a cure for all diseases. I have HOPE that Sweetpea has a great school year and that she will do well in school. I HOPE that she finds wonderful, loving, supportive friends. I HOPE she never lets ANYTHING hold her back. I HOPE that I am able to grow old and be her mom, here on Earth, for a long, long time. I HOPE that I can still fit in my jeans from last year. I HOPE.
My HOPE comes from a deeper place. The Lord said in Jeremiah 29:11 :"For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future."
And that is kind of HOPE that I want to share with Sweetpea.
I want her to learn that I blog and I fund raise in HOPE of finding a cure. A cure that I believe will come... one day. A cure that I believe is worth the fight. A cure that may not come in her life time. Of that, I want her to be aware. But I want her to know that I believe it is important to HOPE for and work for a cure even if she doesn't benefit from it. I do not do this out of selfish ambition. And her HOPE should not be purely selfish either. Of course, I want a cure for my girl more than anything. But I also think of the 40 new families whose world is changing today. And the millions of others. And I know that it's not just about Sweetpea. It's not about me. It's about all of us. We're ALL worth it.
Someone commented on Lee Ann's blog that they did not think it was fair to share their deepest feelings about their child's illness.
One day, Sweetpea might read this blog. She might read my words. And she will feel the depth of my emotions. She will see my deepest fears. Sometimes it's a dark place.
I don't want her to ever feel guilty or sad because of my words. But I do want her know. Because it's her story. It's my story. It's OUR story.
I want her know that I would walk through fire for her. That's what being a mom is about. There is nothing to feel sad or guilty about.
She won't remember what the early days were like. This is a memoir for her.
And when she reads it, I want her see that this blog is full of HOPE. HOPE that comes from the Lord. HOPE that keeps us going.
And I want her feel - in depths of her soul - that this blog is also full of LOVE. LOVE for my child. A love so deep and strong it's hard to put into words. And love for others. Others who share this journey with us.
After all, isn't HOPE and LOVE really All There Is?