J and I love to read. We read constantly! I love reading... Especially "fluffy" mysteries. Ones that are heavy on the mystery and light on the murder.
Of course, I also like reading blogs! And right now ONE of the books I'm reading is "Think Like a Pancreas" by Gary Scheiner (more in that later...)
But one of my favorite books of all time... Since I was little... Is Madeline!
And Sweetpea inherited my love for Madeline, too!
We read Madeline a lot at our house. And watch the movie and the videos...
For the last two years, one line from the original book has haunted me...
"In the middle of the night Miss Clavel turned on her light and said, "Something is not right!"
(In case you are not familiar with the story, It turned out that Madeline needed to have her appendix out.)
I've been in Miss Clavel's shoes. Exactly two years ago, I had quite a few moments where I felt that SOMETHING was not right. I just didn't know what...
Maybe it's the time of the year and the fact that Sweetpea's Diaversary is closing in...
Maybe it's all the dx stories I'm listening to as part of a project for our upcoming JDRF Gala...
Maybe it's seeing all those blue candles and knowing what they mean...
Maybe it's hearing the news that my sweet friend Heather is facing the diagnosis of a second child...
Maybe it was reading Meri's post yesterday...
Memories of those pre- dx days are flooding in. And with them, the emotions and questions I constantly struggle with.
How are we going to do this?
What if our insurance wont pay for it?
What if we lose our insurance?
Will this ever end?
What's going to happen as she gets older?
How will she manage this when she's on her own?
And the one that in ask each and every day...
"Why couldn't it have been me?"
The one question that I don't ask is.... Why? Why my child? Why us?
I think that is REALLY unusual. And odd....
And in no way am I saying that I'm so much more well adjusted or anything like that... Cuz that is soooooo NOT TRUE. And maybe I'll get there... I have no idea where my journey thru the grief and emotions of this disease will take me next.
I'm just saying that from the start, I always answered that question with, "Why NOT us?".
About this time, two years ago... There was a song that I would listen to on my way home from Bible Study. There was something about this song... It would bring tears to my eyes and I didn't get why... Whenever I heard it, I just had this FEELING that SOMETHING was not right. I had this feeling that something BIG was going to happen... I just didn't know what...
I think it was God's way of preparing me for what was to come...
Now, you may disagree with this next part. And it's ok if you do. I think that we, as a community, are able to have differing opinions and still show each other love and respect.
But I believe that there is a reason that WE are living with diabetes. I think that the is a reason that God chose US- or let this happen to US... To Sweetpea.
As much as I wish more than anything that I could take on this disease myself, I believe that God chose her for a reason. And there is a reason he chose me to be her Mom. I believe it's part if His plan.
I don't know why... And I'm not even sure why really matters.
It just is. This is our life.
And I choose to attack this reality like I do best... With full force and passion.
It's hard to be our the sidelines while your child battles a disease... Only calling out plays and hoping that it will work. It's hard to not be in control. It's hard to not be able to make it go away.
And the way I handle that is by throwing myself into this world.
This is why we walk.
This is why we advocate.
This is why I fundraise like a mad woman.
This is why I am an advocate for JDRF.
This is why we we go to Washington to talk with Congress.
I don't think it would be much of a stretch to say this is why I live and breathe.
Because I don't know why...
But I know that I can make a difference.
For you. For the 40 children diagnosed today. For Heather and her Princess. For those who have lost this fight.
And, most of all, for my sweet little pea!
great post my friend!
ReplyDeleteMy thoughts exactly! We can't make our child's diagnosis go away. We can't ignore diabetes. We have to make the best of it...for our own children and for others.
ReplyDeleteHe has a plan, indeed; whether we understand, agree, or want it. We just have to trust that He's laid the path and take those steps of faith.
ReplyDeleteThe way I explain the "why" is that on that day, at that time, God's calendar said 'Bean will be diagnosed with Type 1 Diabetes.' and that's the only answer I feel I will ever have and that's ok with me; it has to be ok so I can keep putting one foot in front of the other!
I'm with you. There is a reason for the journey. Everyone always wants to know WHY we have three. The answer is, there is no answer.
ReplyDeleteLovely post friend!
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ReplyDeleteTwo months after my son was diagnosed, we had to sit down with the school administrators to discuss his care. The principal looked at my son and said, "God gave you this". Sorry, but God did not do this (if there is a God). You're right everyone is entitled to their opinion and if that is what you believe that is your right. I just wrote this as I feel Diabetes just happens. Just like any other disease or misfortune. It happens. No one has a plan for us. It just happens. This is my opinion.:)
ReplyDeleteGreat post! I love the Madeline reference...she's one of our faves here too!
ReplyDeleteAww..we love Madeline too! We have Madeline, Miss Clavel, Genevieve and three friends/school mates..they are like Barbies, but not so skinny! : )
ReplyDeleteUmm..Mary Claire stalked your site all evening, and watched Sweetpea's video-loved it! She said to tell her she did a great job (even asleep) : )
She said she'll consider making a video, but she's scared. (of me sticking the needle in on camera, since sometimes she still gets upset) (and if it's on her bottom, it's a no-go) : )
ps-I got a letter back from one of my senators, and he signed the letter FOR the FDA to proceed! : ) Yay!
Me too...
ReplyDeleteI am impassioned beyond previous years by Heather's recent news and by the deaths. I am tired of Type 1 Diabetes being "belittled" ... I am tired of people thinking it is not a big deal. It is a big deal. People die.
We are walking.
I am volunteering.
Let's "GET 'ER DONE" girl.
You, me, and those that are able must do our part for the future.
I get it. Its THE HARDEST THING I'VE EVER HAD TO DO...being on the sidelines, not being able to make it go away! And you are so inspiring, the way that you put your heart and soul into advocating. I heart you!! And thank you for doing it all for Sweatpea, and our kiddos too!
ReplyDeleteMe too. Me too.
ReplyDeleteI totally agree that my daughter and our family was chosen to battle this for a reason. I knew it from the very start of this journey. I remember saying right away that I know God has a plan. However, at the time I was so devastated that I also remember saying that I didn't care who was saved or who came into our lives because of diabetes. Now, I am more rational I know that this path could lead to her husband, or career, or so many other good things. I try to keep that bit of positive info tucked away for the times when I'm feeling down :-)
ReplyDeleteI couldn't agree with you more. I've had so many people tell me that my sweetie has the perfect Mom for this battle that we fight everyday. Pre-D...I also remember telling people that I could feel something big was about to happen in our lives. Shortly after, I had major surgery that the doctors threatened could be ovarian cancer and it turned out benign. EXACTLY six months later, our little girl was diagnosed. I totally agree that it was God preparing our home and family. I even bought a bunch of sugar free groceries that month before. During our hospital stay, I kept telling the nurses how amazing it was that I 'knew' before I KNEW! God is in control and I know that He will use this to make my girl an amazing fighter! She already is.
ReplyDelete