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.

New Growth

That's what spring is about, right? New growth? I am very much looking forward to some evidence of such, but we still seem to have two feet of snow in much of the yard. It's been that kind of a winter, which has bled over into that kind of spring. I am as tired of hearing people complain about the weather as I am of the weather, but it's all we can seem to talk about. Winter 2014/Spring 2015 will forever be known as the seasons that Massachusetts became one-track boring. Sigh...

Since I can't find any new growth outside, I shall have to concentrate on the inner type. Today is Day 2 back on my ADHD medication after an...oh...maybe...three-month hiatus. The break just served to reinforce to me (again--when will I learn?!) that I need to take it on a regular basis or risk becoming a giant lump. Ten pounds heavier and surrounded by piles of stuff. Not my favorite way to be.

Deep breath in. Deep breath out. Today is a new day.

We took down the ceiling in the kitchen this weekend. I am slowly but surely returning things to their homes and/or finding them new ones as needed. I am keeping my fingers crossed that we don't sport the exposed beams, pipes, and electrical wires look for too long. It will be beautiful when it's finished, and I will no longer remember the frustration of starting each day by cleaning up the assorted ceiling detritus that descended overnight.  I appear to have short-term construction irritation memory. This is a requirement if you're going to buy and old house and tackle most of the jobs yourselves. Thank goodness for Kirk and his bank of house knowledge. My husband can never leave. The house and I would just desintigrate!

Back to The Big Clean.  Yay for Vyvanse!!!

Wedding Sappiness!

I'm sitting at my desk, listening to the rain pour down outside, looking again at the photos I took this weekend.  Sunday, Kirk and I went to a wedding in New Jersey.  I used to babysit for the groom and have known him almost his whole life.  Watching him get married was a somewhat surreal experience.

We shared our table at the reception with my mom and her boyfriend, our friends Erica and Mitch, and their daughters, Whitney and Bailey.  I used to babysit for Whitney and Bailey, too. Erica, my mom, and Judy, the mother of the groom, are the original Wild Women in my life.  I was lucky enough to be initiated as a Wild Woman myself a few years back.  Now, Bailey and Whitney, along with their younger sister Annie, have joined the ranks as well.

This is my chosen family.  Will's, too.  They are Funny Auntie Judy and Uncle John and Auntie Erica and Uncle Mitch.  Let's not even get started on how he feels about Whitney. 

Judy and her husband John live in Rochester, NY these days.  Erica, Mitch, and the girls are in the DC area.  We don't see them nearly as much as I wish we did, and the time we spend together flies by like nothing at all.  I cherish those moments and hold them close to my heart.

Thanks, Judy, for including us in Charles and Sarah's beautiful day.  I am so lucky to have you--all of you--in my life.

I admit it.  Weddings make me sappy.  In the best sort of way.  They make me look at Kirk and want to marry him all over again, which is a good thing, 11 years down the line.  They remind me of the promises we made when we stood in Charles and Sarah's place, and make me happy to realize that we've done pretty well with each other.  They make me look forward to our future, and they help me celebrate our "middle."

I'm glad I married him.  I'm awfully glad he married me.  We fit, I think.  Even when one of us is literally broken, like I've been these past few months.  He's picked up what I've dropped with grace and composure and compassion, and I am so thankful for that.

Onward and upward.  May we all live happily ever after.

What I did today (7/18/2013)

So it doesn't appear that any of the things I planned to do today are going to come to fruition.  What am I doing instead?

• I washed the back door from top to bottom after I opened it to let Will in and realized it was ridiculously filthy!
• I vacuumed the loose paint chips (probably all lead paint) off the floor that came off while I was washing the door.  
• Then, while the vacuum was there, I vacuumed the ceiling, which is a peeling mess and desperately needs some attention. 
• I chose potential paint colors (pending agreement from Kirk) for the teensy hallway just inside the back door.  It's one of those spots in the house that looks terrible and would give us HUGE bang for our buck if we painted it, but we've gotten so used to it in the past ten years that we stopped seeing how awful it looked.  
• I cleaned out the linen/vacuum closet in the dining room, removing anything that isn't either dining room or vacuum related.
• I added more stuff to the ever-growing yard sale pile that is taking over the dining room table.  And the floor in front of the radiator.  I think we should set a yard sale date!
• I weeded (almost) all of the non-functional raised bed in the yard.  There are three strawberry plants that came back from last year (one good sized one and two that are rather anemic, none of which will have a strawberry survive the deer), one volunteer squash plant, one tiny volunteer tomato, and something that my friend Heather says isn't a weed but I can't remember what she said it is.  My mom's boyfriend thinks we could dry it and smoke it.  I'm not certain he's wrong, but I'm certainly not the expert on the subject. 

Why didn't the original to-do list happen?  Because Will is busy playing with the kid who recently moved into the neighborhood.  Play time always always ALWAYS trumps errands in this house!

Now, we're off to the grocery store with a stop at Friendly's for some dinner first.  Why Friendly's?  1.  Coupon.  2.  Ice Cream.  3.  Air Conditioning.  4.  No need to cook or clean up.  5.  Kirk's having dinner with his boss.

Stay cool, Pony Boy!

This has been a year of change.

Since I posted that brief and rather depressing entry in January, I've done a lot of soul searching and talking with Kirk and number crunching and more soul searching and agonizing and overthinking and decision making and more talking with Kirk and a little more soul searching, and in April I finally gave my notice at work.

We have a kid who faces big challenges, many of them different from those other kids his age face.  He needs me more.  Work needed someone more, too.  I couldn't be more of me in both places, so something had to give.  More and more, it was my sanity, and that was no good.  Work can replace someone.  My child can't.  So...I took a deep breath, wrote up my letter of resignation, and gave my notice with an end date two months out, allowing enough time to find and train my replacement.

About two weeks later, early in the morning of April 22, I had an accident on our trampoline that left my left leg/knee with a complete tear of the ACL and the MCL, damage to both the medial and lateral meniscus (menisci?), and fractures of the patellar pole and the tibial plateau.  I spent the next six weeks on the couch, getting up to pee and (eventually) go to physical therapy. 

Today, I am walking with a brace and preparing for ACL reconstruction surgery in October.  In the meantime, Will and I are hanging out for the summer while he gets to just be a kid, not get shuffled off to camps and programs he dreads so that I can go to work to earn enough money to pay for the camps and programs he dreads.

Given the accident, things have not gone quite the way I expected.  I never went back to work, save the one day I went in to clean out my desk and eat cake.  My project list, the one I made during all that soul searching and discussing with Kirk, has been pushed forward, given my limited mobility and summer sidekick.  It also grew, given the six weeks I had to watch HGTV and DIY until I wanted to knock down walls and create an open floorplan (not gonna happen in this house; hello, structural supports!).  But regardless of that, and of the fact that there is a gigantic learning curve involved in shifting to being home full-time after, well, truthfully, never doing it before.  I don't count when Will was a newborn and my life was dedicated to either feeding the baby or waiting to feed the baby 100% of the time, and then, once he was 12 weeks old, I went back to work for at least a few hours each week. 

I told Kirk I'd given myself a new job title:  I am our household's Domestic Engineer.  The pay isn't so great, but the benefits are out of this world.  I look forward to enjoying the fruits of my labor.  You know, once I can walk without feeling like Marty Feldman in Young Frankenstein. "What hump?..."

Here's to living, not just existing!