Muckfest 2015

Yesterday, I got an email from the Muckfest MS team, confirming my volunteer assignment for the "Boston" event on April 25 & 26.  I say "Boston" because Devens, MA isn't really Boston--it's kind-of Boston-adjacent. I guess it's all relative.

The Muckfest is kind of like a Tough Mudder watered down by about 1000%. It's still a physical workout, but there's no electrocution, no giant walls, no special ops training level stuff. And it raises money for Multiple Sclerosis funding and research, which is a cause near and dear to my heart. Two of the people I love most in the world battle with MS every day. Thankfully, it's fairly mild for both of them, but it's still a struggle, and I would love to live in a world where they didn't have to struggle any more, so I am all for helping to raise funds that help work toward that world.

After the event last year, I wrote the little piece I've posted below here. I want to share it again now. I know there are only a small handful of people reading this, but if anyone is interested in participating in or volunteering at a Muckfest MS event, they'd love to have you. And if you're Boston-adjacent and would like to volunteer on April 25 or 26, let me know. I'd love to have some company on the course!

Muckfest 2014 Reflections

A few people have asked me about my Saturday, about seven hours of which I spent volunteering at the Muckfest MS Boston. Although there’s no physical way I could have been a part of yesterday as a participant, it was certainly within my power to be there as a volunteer, so I drove the hour out to Devens, MA at the crack of dawn to stand in the rain with a bunch of crazy people, helping even crazier people successfully complete the 20 obstacles spread across 5k of muddy trail that comprised the Muckfest course.

Shortly after arriving, I was assigned to obstacle #12, the Tunnel of Love, with my partner-in-crime for the day, Matt.  From 7-9 a.m., we waited, listened to instructions, ventured through the Devens woods, and checked out the course.  From 9 a.m. to 2 p.m., I clapped, cheered, and directed people to get on their hands and knees and climb through the two giant sewer-type pipes set in the ground and secured at our station. 

Ours was a fairly easy obstacle.  The ground leading up to it, though very muddy, was fairly flat, and there was no water in the tunnel.  There wasn’t even as much mud as we thought there might be, later in the day, after the first half of the 5,000 participants had climbed on through.

 The two obstacles before us were the zig-zag pits, which involved running zig-zag through trenches that were mid-calf deep with muddy, mucky, cold water, and something called Natural, which involved climbing in and out of a very steep, very mucky ravine.  I’m still not sure what was at the bottom of it; my knee said no when I contemplated going in. 

Going through the obstacle after us, the Thunderstorm, involved climbing under a tent top that was just above ground level, under which was a pool of muddy, mucky, cold water to wade/swim/survive through to the other side.  Through the whole day, ACDC’s Thunderstruck played at full blast there, while the tent made thunder-like sounds while people soldiered through.  I was happy to learn that the noise was the tent, not the rainstorm that stalled out over us and kept us soaked through from start to finish.

Yes, comparatively, we were a fairly mild stop.  In fact, I encouraged many muckers through the tunnels over the course of the day by promising that it was warm-ish and dry-ish in the tunnels, or at least not actively raining in there.  The best news I shared, though, over and over with every group that went past me, was that just on the other side of the tunnel was the two-mile mark, so completing the Tunnel of Love meant you were about two-thirds of the way to the finish line.

For several years a couple decades ago, I volunteered along the route at the Boston AIDS Walk, part direction-giver, part cheerleader.  At the volunteer orientation we were all required to attend, the course coordinator told us, “I don’t care if you have cheered the same cheer thirty seven thousand times already and you’re sick of hearing your own voice.  The walker in front of you didn’t hear it the first thirty seven thousand times.  He’s only going to walk by you once, and it is your job to encourage him past your spot and on to the end.  Your cheering voice may be the thing that propels him to finish the course, so you better make damn sure he hears it!”

I thought about that yesterday, as I was standing in the muck, drenched through five clothing layers so that even my bra could be wrung out, cold and and tired, with feet I couldn’t really even feel any more and hands that were red and numb from the combination of the water and almost five straight hours of clapping.  I wanted to stop and find a dry spot and curl up with a cup of tea and curse the moment I ever decided to sign up for an outdoor rain-or-shine event in Massachusetts in April.

But then, one mucker would come around the corner.  Maybe she was wearing a shirt that matched a team that passed through 20 minutes before that, or maybe he was in clothes that matched no one else we’d seen all day, just running for his own private reasons. 

Participants had to climb a slight hill, maybe 10 yards or so ahead of the Tunnel of Love sign, to get to us.  These single muckers, without a team to bolster them up, almost always slowed just short of the hill.  Some of them stopped.  That spot was a sticking point, over and over again, all day long.

When I saw the muckers come to that spot, I cheered harder, yelling and clapping them up the hill.  Every single one of them, all day long, picked up their pace and crowned the hill, hands above their heads in victory as they ran, walked, stumbled, and slid toward my voice.

“Welcome to the Tunnel of Love—come on through!”  I yelled to the three thousand muckers who passed me when the reached the top.  “Just past the tunnel is the two-mile mark!  That means when you get through the tunnel, you are two-thirds of the way to the finish line!”

Over and over, I watched that news penetrate.  I heard cheers and happy exclamations and a few, Oh, thank God!s.  And maybe, once or twice, I got to be the thing that propelled them to the end of the course.  I know I was the thing that propelled them to the top of the hill.  And for that opportunity, I am eternally grateful!

Many of the muckers thanked me for volunteering as they passed.  A whole bunch thanked me for my enthusiasm.  One told me I was a “breath of fresh air” in the middle of the course.  Every single one of those comments was a gift to me and was WAY more important than my numb toes and sore hands.  That was why I was there.

I desperately, desperately hope that some of those dollars raised yesterday will lead to some discovery that eventually makes this evil disease a thing of the past.  But for that money to be donated, the fundraiser had to be held.  And for the fundraiser to be successful, people have to be there to do all the myriad of things needed to move people and their donations from Point A to Point B to Point X, Y, and Z, especially if there’s a Tunnel of Love situated somewhere between those points.  Being one of those people—that’s something I can do to help.  And I’m so glad to have the opportunity to do so.

To all the muckers who passed me on their way between Natural and Thunderstorm yesterday, thank you.  Thank you for being just crazy enough to strap on those now-ruined shoes and team shirts and tutus and duck suits and whatever else you donned to complete five kilometers of craziness (I’m looking at you, guy in the Speedo!).  Thank you for your time and your dedication and your blisters and your red, chafed skin.  Thank you for making your donations and maybe, just maybe, getting us one step closer to a cure.

My Saturday was great.  Thanks for asking!

Best Words

Monday morning, when we pulled up in front of the school, Will's principal was standing at the corner, letting the kids know that they were waiting for the first bell outside for the first time since before all the snow. For most kids, this was great news--a chance to run around like lunatics and burn off a little energy before they have to go in and sit down at their desks. For Will--not so much.  His anxiety immediately kicks in with a running diatribe in his head. "By the time you get there, everyone will have gone inside and you will have to knock on the door and get let in after it's closed and everyone will stare at you. Or you will come around the corner and everyone will be playing and you will be left out. Or you will interrupt someone's game and they will start off the day mad at you. Or you will step in a puddle or fall in the mud or do something equally as yucky and everyone will laugh at you and your day will be ruined!" Or something like that. I don't know *specifically* what his fears involve, but that's the general idea. Whatever he thinks exactly, it all means his anxiety is ramping before he even sets foot through the door.

In the fall and early winter, before the snow fell and covered the entire playground and we could anticipate the outdoor time, we had a couple different plans in place to deal with it, depending on the morning. But this week we were caught off guard. The change happened with no warning. We had been lulled into a new routine and I didn't even think about the fact that the return of above-freezing weather, combined with most of the snow being gone, would send the kids outside again.

In fact, Will was already out of the car and I was starting to pull away when I realized what was happening. I was in the drop off line, boxed in and unable to park and get out, helpless to help him. He was around the corner before I got out of the drop zone.

To make matters worse, Monday and Tuesday were MCAS ELA testing days. The bane of the SPED parents' existence. These days, Will is academically at a level where the test shouldn't be such a challenge, a change from when he first came into the school and was operating almost three grade levels lower across the academic board, but his anxiety and executive function challenges and inability to focus still make MCAS a nightmare for him. We do the best we can to play them down; I explain to him that the tests are more to show how the SCHOOL and the TEACHERS are doing at teaching him than to show what he, specifically, has learned. We have special MCAS breakfast on those mornings. I meet him at pickup with special snacks. We try to find as much of a silver lining as we can, but there are still Other Factors for him. And extra worries for me.

He made it through Monday and played down the drop off scene when I asked him about it later. We actually had a pretty good night on Monday, and Tuesday morning started off really well. Because I make him special breakfast, though, I'm always behind with MY schedule on those mornings and often end up driving him to school in my pajamas. Tuesday was a "behind" kind of morning for me.

While he was brushing his teeth, the last thing he does before we walk out the door, I mentioned that he would probably be outside again today and that we would go to the back of the school so I could drop him off at the field, as was our regular routine on outside days before the snow. He kind of grunted in response, finished with his toothbrush, and knelt down to say goodbye to the dog.

We got in the car and started driving to the school. I commented again about dropping him at the field and he froze.  "But Mummy, we aren't down on the field. We're up on the blacktop! You need to get out and walk me around!"

I was still in my pajamas.

"I can't walk you today, Will--I'm in my pajamas! I will have to drop you out front and you can walk around from there."

Arguments ensued. He demanded. I resisted. We pulled into the drop off lane. He refused to get out of the car. I started to lose my cool. The car behind us honked. It wasn't pretty.

Eventually, after an incredibly loud and angry, "FINE! BUT AFTER SCHOOL YOU OWE ME BIG TIME!" he got out of the car and walked around the building. I drove home feeling sick. All of the work I'd done to start his day off on a good note--out the window. Instead, I was annoyed, he was upset, and our exchange was anything but supportive.

 This morning, I got up a few minutes early, got dressed, and made sure I was walk-prepared. While we were eating non-special, regular morning breakfast, I asked him if he and I could talk for a minute about Best Words. He asked me what that meant. I reminded him of what had happened the day before and told him that I'd left the school feeling pretty yucky about our conversation. He admitted that he felt yucky, too, and we both agreed that we hate feeling that way. I told him that I'd thought about it a lot and that I believed what he was actually trying to say to me when he demanded that I walk him around the building was, "Mummy, I get anxious when I have to walk to the blacktop myself, and it helps a lot when you walk with me to keep me feeling calm." Why, yes, that *was* what he was trying to say.

I explained to him that if he had said that to me when I brought it up in the bathroom, I could have taken the time to change my clothes and been ready to walk with him, and that telling me what he was actually thinking like I'd just done, and which he admitted he was thinking in his head, would be using his Best Words. And when someone uses their Best Words, it's much easier to have a discussion and get what you want, instead of demanding and arguing. I also told him that I hadn't used my Best Words because I'd brought it up to him while he was distracted and hadn't made sure he had actually heard me.

We agreed to try to use our Best Words with each other going forward and then shook on it. I hope I can remember to do so myself, not just remind him to use his.

This morning, I parked by the field and we walked together up to the blacktop. He left for school happy. Score one for Mom!

Wouldn't life be so much less complex if we ALL used our Best Words with each other!

Another Day

I woke up this morning with a Sting song running through my head. I have no idea why this particular song has surfaced from the depths of my musical memory. I like it, but I haven't heard it in years. The brain, it is a mysterious thing.

Mister Will is home sick today. Again. Until February, we made it through each month of the school year missing only one day each month.  With Will, that's an accomplishment.  For the most part, the days he was home were days where he just could. not. deal. Then, in February, despite all the snow days and the vacation and all that, he was home for two days where school happened, but he was actually running-a-fever sick those days, so they fall into a different category. March hit and everything went to hell. He missed three just. can't. deal. days in March.  At least today is April 1, so today's day falls under a different month count. Jury is still out as to whether this is a true sick day or a just. can't. deal. day. We changed his meds on Friday and there are some side effects that are rearing their ugly heads, so I'm guessing the stomachache he was complaining of this morning is related to that. But it could also be stress.

Back in a different age, before the string of diagnoses that left Will with more letters after his name than a college professor, I was a smug parent. My kid was fabulous and we had a great relationship. Of course, in those days, I was with him 24-7 and he was not yet 3. Now, my heart breaks for his struggle every single day. And right now, well...right now is a bigger struggle than usual. And yet, somehow he continues on. There is an amazing resilience in my son, and I am so very proud of him.