Tuesday, September 18, 2012

Hope - Mito Week

Happy Mito Awareness Week everyone. It's Tuesday, day 3. Only 4 official days remain. We'll be at the California Pizza Kitchen on San Felipe Wed. night at 6 p.m. - don't forget to print your flyer!
Yesterday, (Monday) I was overwhelmed with support. So many facebook friends have gone above and beyond. They have dedicated their cover page to Will and Mito awareness. Our friend Sara, or "Ms Big Sara" as Will calls her, created a cover photo for us to use to spread awareness. (She's not big, just tall, but she got the nickname in high school, when she was still not big, just tall).

Photo: If you want a profile pic instead of a cover photo for Mito Week...
How cute is that?
Then, I got this email from our friend Sheila as she was preparing her own outreach efforts in San Antonio, it put me over the edge...
"My plan for this email was to put a lot of information and links about Mitochondrial Disease, but then something happened on Sunday that made me change my mind and so I have decided to share something else instead.  I have a 4 year old daughter, Abby.  She knows Will and knows that he has a "sick" inside his body.  Every night she says a prayer especially for Will asking God to make Will's "sick" go away.  On Sunday I asked Abby if she wanted to color some of the Mito coloring pages I had printed from the UMDF website so that I could put them on my office door for Mito Awareness Week.  She asked my why I wanted to do that and so I told her that we want to tell a lot of people about Will this week so that we can all help the doctors make Will's "sick" better.  Then she asked me "how did Will get sick?"  Which we have talked about before but I explained to her again that the sick was just there in his body already when he was born and sometimes that right now the doctors don't know how to make it go away and that's why she saves money in her special Will piggy bank and why we need to tell a a lot of people so we can help the doctors. 
Well...she started colored the pictures, and we went on with our day.  When nap time came we went up to her room and got her settled and then she just looked at me and started crying.  Now this is nothing new for her...she is in the cry about anything and everything phase of being 4, I figured one of her nightlights was not on or something as equally as devastating
But when I asked her why she was crying she just put her head down and said she was crying because she was just really worried about Will and that she didn't want him to be sick anymore.  Now this just floored me...she was seriously crying...it was all I could do to keep from crying myself.  It was like she all of the sudden understood what we have been talking about with Will since last year, and she understood the seriousness and sadness of Will's situation.  Watching a 4 year old come to terms with this information was crazy and disturbing and impressive all at once.  
Later as I was thinking about what to say in this email this year I thought about Abby and how much she wants Will to be better and I thought if I can share this with you than maybe that would make more of an impact than the clinical info about Mito.  During this week I hope that you will just talk to anyone and everyone who will listen about Mito and about Will.  Over this week I will send more information about ways to help the cause, in the meantime you can check out the United Mitochondrial Disease Foundation's website at umdf.org.
Abby and Will at the Energy for Life walk in Houston.
Part of why Sheila's email hit me hard was the fact that one day, we're going to have to explain Will's situation to Will. How on earth am I going to do that? How am I going to explain it to his cousin Carson, his "best bud" as they call each other. I can barely deal with this in my own head. It's enough to make my head spin, tears fall and my stomach turn.
Then I realized, by damn, I hope I get to explain it to him one day. That means he will be old enough to understand, have the cognitive ability to understand and me and Neil to help him get through it. I hope I have the time to have more kids and get to explain it to them and for Will and his brother or sister (or both) to be there for each other.
I can't see Will past the age of five. That's just two short years away. I hope that I get him for a lot longer than that. I hope that he will be able to enjoy the brother or sister that I should be pregnant with, but that I'm not. I hope for so many things, but it's people like Sara and Sheila and her family that give me hope that one day enough people will know about mito and one day there will be a cure for kids like Will.


  1. Lori, it's Natalie Reed. You probably don't remember me, but I played volleyball with Julie in HS and I really appreciate you being so transparent with your family's experience with Mito and spreading the word. I'd never heard of Mito before prior to reading this blog and doing some Googling. Thanks so much for sharing and God Bless!

  2. Lori, somehow you always have a way of finding a silver lining, even for the most awful realizations (like explaining this awful situation to our hero Will). I am making wishes for you guys every day that not only do you get Will for a lot longer than that, but that he gets to be a big brother, and all the other things you so richly deserve. You have handled the un-handle-able with a maturity and style that most cannot imagine. I am lucky to know you. I'm planning a CPK outing for Friday with our regular dinner crew (they usually eat at our house). We will rep UMDF and rack up a bar tab while we're at it ;) Biggest hugs to you mama!

  3. We pray and we hope. And we're going to CPK Friday evening, River Oaks location. Love you, Martin family.