Like so many of us here the one most dreaded day of elementary school for our boys is Field Day. Well, today was Field Day once again. I have 2 boys with DMD and 1 who is "normal". Why the quotation marks?..Because really what defines normal anymore anyway?

My oldest is 15 and way beyond Field Day. I remember his first Field Day..What will happen? I have a pit in my stomach as everyone else lathers sunscreen on their kids, gives them a water bottle and they hop on the bus off to Field Day. I am on the phone a week before Field Day with the Adaptive PE teacher. What are the events? Can he participate? Will you be there to help?..I of course showed up early to make sure everyone understood what was going on. What I didn't expect was how well it wasn't just running races, it was water fights, scooter races, leaky bucket, water balloon toss and then the running, well by that time the stress of the whole thing was gone and everyone was having fun. Realizing that my son wasn't the ONLY child who couldn't run. It never dawned on me that the kids with asthma, heart issues..etc. etc. can't run either. The best race ever was the Jr. High volunteers running a leg of the 50 yd. dash with the kids on their backs that couldn't run.

We made it through that one. As the years past and the disease progressed Field Day wasn't as much fun anymore as it started to get competitive and we realized that Tom couldn't do the events and as he got older, the older kids went in the afternoon when it was usually close to 90 degrees.

By about 3rd grade we stopped doing Field Day but not because we felt the school was insensitive but because I think it was getting frustrating for my son. So, we started taking the afternoon off on that day and going to the movies or out to lunch or buy a Lego. Maybe that's not a good way to show participation but we sure had fun.

This year my middle child with DMD Kevin is 12. He is still walking fine (his brother was using a scooter at 12)..He has always participated in Field Day and didn't have the apprehension his brother had. The school added discus and shotput and for the last 3 years those have been his 2 events. Last year he came in second in the discus..But they took that event out this year. He woke up this morning and said, "mom i really don't want to do this now." There wasn't any real melancholy in his voice just matter of fact. I said fine and we decided to go see Wolfman.. something I would hate because of the gore but off we went..The only place it was playing was the cheap theater as it's almost now on DVD. We sat down in a theater with about 6 or 7 men sitting in various areas of the theater presumably retirees. I don't know why, but I found this extremely humorous as did my son. Everyone else in his class is sweating on the field, some crying because they didn't win ribbons and we are in a dark theater watching a Wolfman eat people.. Life is good.

And what about my "normal" son? Well he is 8. He was conceived after way too many drinks on St. Paddy's day when I was 38. What were my husband and I thinking? Obviously we weren't. I knew I was a carrier, I was careful..(i thought)..Then here comes Brian..all tested in DMD..what? Really? I gave birth to the Goliath.. 90 lbs now.. Strongest, fastest player Brian..So now what do we do?. Let him play football, run, go brian go!..Today he hops out of bed puts on all his Under Armor gear and starts stretching as he is running the relay today..My older boys find it funny as he is wickedly competitive on top of it all. Before I went to see the Wolfman, I went to Brian's Field Day. He ran the third leg of the relay.. He was behind the other two by a few lengths..All of a sudden he had a burst and took off past them and everyone around me is commenting on fast he is. I am screaming Go Brian Go! as loud as I can across the field realizing the rest of the parents are staring at me, like lady, that's really obnoxious..this is for fun! and I know how they we all do when we know our DMD boys aren't going to win the running race..But I couldn't help it. Run Brian Run!..over and over..Now I understand why I did it and I know a few of my friends did too. I was thinking in my my mind as I yelled.. Run Brian Run because your brothers can't, Run Brian Run because you can, Run Brian Run! They came in First Place....

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Comment by Donna on April 12, 2010 at 10:12am
I love this blog!!!! I can picture this happening whether it be you, me or any other parent (okay, probably us mom's ;-) )... Kyle (DMD) is our youngest, so it won't happen quite in the same order. I have an 8th grade daughter who is quite athletic and loves volleyball and confided in me one night that one of the main reasons she works and works so hard to get better is for him - for Kyle (yea, how do you not cry at that one!!). My 11 year old, non DMD, son is also quite athletic and very fast and while he doesn't "really" get this whole DMD thing and what that means for Kyle, I think too at some point some of what he does will be with Kyle in the back of his mind. I know I've read that sometimes it's hard for parents to make sure they don't push their non-DMD children too much with athletics, but what do you do when they are already pushing themselves because of it??? I think it's quite honorable and sweet. We are letting Kyle play baseball this year as he is quite mobile (alittle slower than his peers); but nothing can beat the HUGE smile on his face yesterday when he had his first scrimmage game. I got to the ball field and out of the corner of my eye I could see this little hand waving and I looked out to left center field and there he was, all dressed in his uniform and looking so happy - pure joy....
Comment by Rita Felling on April 11, 2010 at 1:55am
I read your blog and it made me think we have track and field day at school also which just so happens to be at the same time MDA camp is. I have two sons with DMD and I have been spared that event but, we also have winter olympics day. Like you I have always been there for the event with some anxiety for my sons. I also have an older son who is quote "normal" and I am the mom always pushing him to be the best at everything too.
Comment by jenn on April 9, 2010 at 9:13pm
awesome! i too have two sons with dmd, austin is 11, max is 8...i re- married and concieved (actually not in that order exactly, we married when the baby was 1 :) i gave birth to james, who is now a healthy, fast, toddler, no dmd. i have the same feeling sometimes, we have even decided to sign him up for the mickey mile in january in disney, do it for your big brothers we tell him!

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