Unprepared

Yesterday, Inspired Wining got some great publicity in the Huffington Post thanks to supporter, Sheila Moeschen of HerSelf First.  I have to admit that I was on a high from the unexpected accolades and the hopes that Sheila's lauding will yield some new fans and supporters and will help us continue to grow and reach women all across the country.

My oldest son, Owen quickly sobered me up tonight when he asked if you could die from Duchenne.

I was watching a video about Charley's Fund, another organization who funds research for DMD.  Owen walked up and asked what I was watching.  After I told him it was a video about Duchenne, he blasts me with his question and I was totally unprepared.

I answered yes, you can die from Duchenne and explained as best I could why this was so.  Then, he asked if Matthew was going to die.  I think I said “Maybe.”  Owen said he hoped not.

Maybe?  Maybe?  I couldn't do any better than that?  I have been waiting for Owen to ask about Matthew's condition for years and finally it happens and I botch it.  This was not how I envisioned this going.  We were to be looking eye to eye, not at a computer screen.  My daughter was not supposed to be screaming for me in the background.  This was such an important moment and I come up with “Maybe.”

So he leaves, I cry and a few minutes later track him down in the bathroom and remind him that the races that we host every year are helping make Matthew better.  He nods eagerly and escapes.  After reading in bed, I ask Owen if he has any questions about Duchenne and he is quick to say no.  I lost my moment.

Right now, I feel broken.  Not only because I didn't react the way I had always planned, but because on the heels of a wave of a lot of positive movement, including Matthew's first participation in a clinical trial, a recent Inspired Wining launch in Charlotte and the new publicity, I am reminded that this isn't just about momentum and progress.  It is most of all about that little boy in the next room who has all of our hearts and is fighting the greatest fight there is and he doesn't even know it.

Ironically, I welcome this ache.  It is life-saving and healthy to be hopeful, but a little shot of reality is good, too.  I certainly never forgot the reason for all of our efforts, but I am refocused.  I imagine that just like in all parts of life, the scales will tip from time to time.  The cause will come calling again, but right now, I am going to concentrate on the peace that resonates from the three amazing creatures that sleep soundly down the hall.

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy.