Big Sur, big moments….CCC days 3 and 4

“Courage and perseverance have a magical talisman, before which difficulties disappear and obstacles vanish into thin air.”  John Quincy Adams

So, the riders actually made it to Big Sur on Monday…and soaked their feet in the river, sitting in Adirondack chairs in the water while sipping beer.  But the cell reception is absent, so I couldn’t get the details until our evening phone call last night.

10678544_10203716160357308_6081594654706937337_n10710787_841469609197929_4189949543869280773_nDave and Dan were sporting some jerseys we picked up at a brewery this summer on our vacation in Moab.

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It was a 40 mile ride between Monterey and Big Sur – which offered plenty of time to stop and enjoy the sites.  Despite learning the lesson year one that he was going to be able to complete the ride, and that he should now stop and enjoy the journey – this is still not one of Dave’s strong points.  While other riders like to stop at the local taco spot for lunch, Dave powers through those quaint towns.  Basically he only stops long enough to get some fuel at a rest stop or take photos.  Sitting down for any length of time, he says, causes “Café Legs” – or cramping, stiff legs that are not eager to pedal again.  But the sites on Monday were too great for even Dave to resist.  Along the coast that day, not only were there sea lions and dolphins, but several pods of whales – who were blowing, breaching, spying and generally entertaining the riders who were stopped to enjoy the majesty. So the day, with its beautiful vistas, seems to have had a more relaxed pace and vibe – which translated into more conversations, more people to meet, more connections.

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The stop at Big Sur River Inn also is acceptable – being near the end of the ride day.  (There’s also a shuttle going to and from the campground for convenience.)  It was here that Dave got to talk to Jerry.  I’ve been following Jerry’s story as he trained and fundraised for this ride in support of his 4 year old grandson Carter – who is so dang cute he looks like he popped off a Gymboree ad.  Jerry has a facebook page and has branded his efforts 525_4 Carter.  He’s been telling the story, getting local businesses involved and really going gangbusters.  Without having met him, I get the sense that all of his efforts are to balance the frustration he feels at seeing his precious grandson in pain…. and not being able to do anything about it.  When Dave talked to him, he could see that look… that shell shocked, just- been- through- hell -and- can’t -barely -turn- around- in- case- hell- is -chasing -you look. It’s that look that I remember on my own face for a long time… years probably, after Caitlin’s diagnosis.  That disbelief, that awe… that small flickering flame of hope trying to grow.  It’s the look I see on other parent’s faces when they are new to the family, and they are telling me their story with a sense of desperation – and there is a moment when our eyes meet and I can tell we will both cry.

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I don’t suppose Dave cried – but the moments he had that day brought him to the brink.

It’s always a fine line when we meet people who are newly diagnosed.  We want to share our story – and we don’t want to lie.  But we certainly don’t want every person who is already freaked out by every black box label and crazy statistic they have read on the internet to think that their kid will try and fail so many medications.  Or have their femoral heads sawed off and replaced with titanium.  But we also don’t want them to not “get it”.  They need to know what the monster is and that they will have to fight.  But that there are a lot of happy endings.  And middles.  And everything around in between.

Jerry clearly gets it.10665806_10152554265733673_4064968462862362567_n  And I believe that as he is pedaling this ride, every mile he is thinking of his beautiful grandson Carter…. knowing he would never stop pedaling and telling his story  if it meant the end of arthritis for that little boy.

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(this is Jerry with Amy D and Monica- two of the staff who make this whole ride possible!)

Dave is fond of saying that there is at least one moment at every event we attend or work that just shoots an arrow of this mission directly to your heart.  There is always a story, or a person, or a family… there is something that makes whatever you are doing – whether you are pushing a porta-potty across a hot parking lot, or handing out water, or setting up at 4am, or pedaling up a steep hill at the end of a really long day- there’s is always something that reminds you WHY.  Why you are volunteering.  Why you are spending your time.  Why you want to make a difference.

At the Orange County Arthritis Walk – Dave spent the morning in the CCC booth telling people about the ride.  There were two riders that signed up as a result of that 3 hours.  Two people out of 3000 that were there that day.  But – it was John, a JA dad and veteran. He found Dave at Big Sur and thanked him for motivating him to sign up.  John is active 46417bf3-1f36-467f-b951-f05ef4dbf40dduty military police in the Navy and is riding in honor of his daughter Hayden, who was diagnosed at age two.  Dave then thanked him for his service and I believe there may have been handshakes. (In my mind it was hugs, but I wasn’t really there..)

The honoree for the Big Sur day was Natascha- who is a 28 year-old dynamo who was diagnosed with arthritis at age 12.  It was a very difficult journey getting control and along the way, she was in a wheelchair, on crutches, splints and plenty of pain.  Natascha enjoyed her AF camp experiences so much, that she became a counselor as an adult – and now she is a mentor and trailblazer for kids with arthritis.  One of the best things about her is her perseverance and fortitude.  This chick does not give up.  She sticks to it so much that she is riding the ride this year.  Not part of a day.  Not just one or two days.  The whole ride.  It’s not really possible to spend time with Natascha and miss getting a mission arrow through the heart.

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So, it was one of those days.  Big Sur was beautiful.  The scenery was beautiful.  But the most beautiful thing was the people.

And while I am thinking about all the remarkable people on the ride – I want to extend some thanks to the remarkable people who supported Dave in making this week sojourn possible.  Dave’s parents drove all the way down from Oregon and his sister drove in with my nephew to cheer the riders on the start line- I know it meant a lot to him. Dan’s family was there too – both in SF and in Santa Cruz.  My family has been doing some serious overtime, with babysitting and pick-ups and drop-offs (not because I am at the wine bar!  It’s just too many things happening at the same time:) – I swear I gave them a two-page schedule with attached maps for everything I asked them to help me with while Dave is gone.  Dave’s work has been fantastic – not only his office mates, but the vendors, the guys all through the field- they have donated and supported him black eyes and all.  And naturally – all of the people who donated to Dave and Dan made this possible.

Thank you – and my most heartfelt gratitude to you.  May blessings rain down upon you all!

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Road warriors….

Just taking a slight detour from the success and great moments happening on the CCC – to spend a moment recognizing what it took for the riders to get there…. and the dangers they face on the road.

I have great mind redirection muscles when it comes to negative thoughts and fear fantasies. It comes from years of practice not going down the “what-if” road when it comes to JA issues. So, I try to give my brain a little slap if I start to dwell too long on the thought of what could happen to my husband, or my very good friend – or any of the other riders as they pedal down the coast mere inches away from speeding traffic on windy roads.  I mean, people ride all the time, right?  We live in a cycling state!  There are tons of shops dedicated to the sport, and pods of lycra-clad road warriors can be found at every beach coffee-house on weekend mornings (or even weekdays for that matter.)  So, it’s OK, right?

But this year – there was a training incident.  On the bike.

Dave came home from a 50 mile ride about two months ago – on a Saturday morning.  When he walked in and I asked him how the ride was – he just shook his head.  As he got closer, I saw the blood.  And realized he was cradling his hand.  He had gotten separated from Dan and had backtracked to find him.  He climbed a hill to get a better view, and not seeing Dan, headed back down the hill at high-speed – directly into a pole.  He wasn’t dodging a car, or puppies running in the road – he just for some reason rode directly into the pole. No explanation.

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The result was that we spent the day in urgent care and then the emergency room, where it was determined that Dave did not have a concussion (Yay!) but did need 5 stitches on his brow and had a probable fracture somewhere in his wrist.  It turned out to be a scaphoid fracture and he was issued a splint.  In terms of bike injuries – this was nothing.  BUT – it was the first one and it sort of opened up the fear fantasy factory for me.  About a week later, Dan sort of did a slip and slide on the pavement and left most of the skin from one arm behind…. and I started thinking maybe we should rethink this thing!

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Ultimately, it just meant a splint for Dave for several weeks (and visits to ortho for follow-up) – and lingering pain.  It put a big crimp in the training schedule for sure.  I was grateful it wasn’t worse.

All of the riders are facing some of my greatest fears when they do this tour.  I don’t believe I’ve ever come close to claiming I would do the ride as a rider someday- because I’m not sure I could overcome those fears.  The fear of riding near cars.  The fear of riding near other bicycles! The fear of riding uphill and actually travelling backwards because my legs are not strong enough to overcome gravity. The fear of being the cause of some accident, be it cycle of car because I’ve let my fears turn me into an uncontrolled lunatic on wheels.

I’m just saying – these riders are warriors. And even though I believe that many people could do this – you could do this if you wanted to – they ARE doing it right now. So, my utmost respect to them.  Eyebrow scars and all.

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Back in the Saddle, CCC 2014

I was going to start with an apology intended for those that have no interest in reading about this particular event - but I changed my mind.  Because, frankly, I’m too dang proud of my husband and the other 190 riders joining him in the 2014 California Coast Classic – biking 520 miles down the coast and raising $1 million along the way.  Also – I’m too moved and inspired by the stories I hear and the people I meet not to share with you.

So, the ride started Saturday in San Francisco.  It’s Dave’s 4th year riding as Team Princess Parade – and our great friend Dan’s second year riding.  Dan’s wife Michelle, their two kids, and my two sons and I drove up on Friday (after school) so we could be there Saturday morning to see them off.  It was a beautiful morning – just a slight chill in the air as the morning fog burned off, as the riders gathered at Fisherman’s Wharf for breakfast and a kick-off ceremony.  2014-09-13_08-22-50_172 2014-09-13_08-15-25_875

The ceremony was dedicated to Christiana Powery, who passed away in 2005 from Juvenile Dermatomyositis.  Her parents, Dwight and Maria,  ride every year, and they have a large team called Also Touch.  This is actually their 8th year, and their team raised over $30K this year.  Over all of their efforts, they have raised more than $275K.  In remembrance of Christiana, all of the riders have a SpongeBob sticker on their name tags and bike tags- because that was her favorite character.  In my mind, it feels like just yesterday that I learned about Christiana’s passing.  For reasons I don’t need to explain to you (because you understand), it was particularly devastating.  She was only 10 years old- Caitlin was 7 at the time – and the thought that such a young life could be taken so quickly, so dramatically, due to a disease similar to what my daughter had…. well. Can’t really spend too much time there, can we?

When I saw a sign later that day with the years of her life written on it – I was stopped with such a mix of gratitude and disbelief.  So thankful for my own daughter – (who was not even with us because she was enjoying 2 nights of One Direction concerts!) and so filled with wondering about what Christiana would be like this year – as a 19-year-old young woman- had she lived.  I don’t suppose there could be a better mission moment for why this ride is so very important.  I didn’t seek out Dwight and Maria that morning.  But to be quite honest – I sometimes have a hard time talking to them.  Not for the reasons you would imagine.  It’s not because I pity them, or even out of empathy – or because there are no words, even after 9 years, to say to parents who have been what they have been through.  Really, I am sort of in awe of them for their strength, resiliency, tenacity and GRACE.  They have so much grace that sometimes, I feel like I can’t be too close to it- because it’s like it shines so very bright you can’t get too close.  Sorry if that seems really weird – but it’s true.  So, I will just finish by telling you that they are extraordinary – and that if you can do it, you should visit their website to learn about Christiana and their story.

After the riders took off, and we had checked out of our hotel,  our motley crew headed to rest stop #2 to ring cowbells and thank riders as they stopped for rehydration and snacks.

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Then we moved on to stop number 3. There we met up with the honoree of the day, Mia.  Mia’s folks are repeat riders in her honor, with their Team Sluggy. It’s always a treat to see kids that you know from previous events – because of how much they have grown!  Mia is 11, diagnosed with pauci (Oligoarthritis) at age 6.  But it is a small part of who she is – an active runner and gymnast and Taylor Swift fan, who will accomplish whatever she dreams.

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Along the way, we rang bells as we passed riders on the road.  I worried that having a loud bell suddenly in your ear as you pedaled on a 6″ shoulder of a very busy highway might be dangerous,  but we started ringing well behind the riders and they smiled and gave us a thumbs up.

The 87 mile day ended in Santa Cruz, where the riders set up their tents on the football field.  My husband loves this part of the trip – the camping every night. Even though hotels are an option, and several riders do that – Dave loves the whole tent condo experience.  I have to say, I was tired at the end of that day – and I traveled the course in my minivan – so I can only imagine what kind of reserve it would take to finish that ride – and THEN set up a tent and all your gear.  Just another reason these riders are magnificent:)

Dave and Dan wisely chose spots on the edge of the field, near the track – just in case there was a repeat of the previous year when the sprinklers went off.  Turns out it was for very good reason – as Dave found himself stomping his size 12’s on the sprinkle head to hold the water at bay while he yelled at Dan to drag the tents to the track – at 12:30am!  There is a rumor that perhaps the high school football team played a part in this, because I know very well that the staff did everything they could to prevent this…. but the riders were quick to react and fortunately, most escaped without a solid drenching.

Day 2 was a much shorter day that brought the riders to Monterey.  Most riders were in by lunchtime, which afforded the opportunity to go into town to catch some football and some fried artichokes.  Yes… a local specialty!

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It was also team jersey day – so the guys were sporting their great Princess Parade jerseys.  Mark J is also on the team this year – and not pictured is Laura – riding this year as a princess:)

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Today, the riders are headed to Big Sur – which is one of the favorite stops on this tour.  Dave says the coast has been a bit foggy – so he didn’t get great photos.  However, they did see a pod of dolphins and a bunch of sea otters – so it has been a great day for coastal sites.

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There – they will soak in the river and enjoy some local food and drink before heading to camp.

I always ask Dave if he has ever met any new and interesting riders.  He texted me about Glenn from New Jersey.  Glenn has serious osteoarthritis and has already undergone knee and hip replacement.  He was looking online for a new riding jacket online and stumbled upon a CCC jacket.  Intrigued, he investigated further – and in a spontaneous bucket list cross-off, he signed up for the ride.  Dave says Glenn has been a tinkerer with bikes, but upgraded this year – and has been a tremendously strong rider every day.  Kudos to Glenn and to all those like him who take a leap of faith on an adventure like this!

Every year, I am struck by what an incomparable event this is.  And even though the kids and I follow along where we can, and ring cowbells and give high-fives – there clearly is a special bond that exists only among the riders, staff and volunteers that spend this week and this journey together. Someday, I hope that I can follow the whole week – and meet every rider.  I can make a mean peanut-butter and jelly sandwich too!  Alas – with three kids in school and activities, it will need to wait.  Hopefully, Dave will still be riding in 2027 when our youngest graduates!!!

If you are a bike rider (notice I purposely did not say cyclist?) – and you have spirit – I hope you will consider this event for 2015.  I promise I will be there, somewhere, and some day, to cheer you on!

Until then – please send up your prayers, positive thoughts and good vibes- that these riders will be safe in their travels and their efforts to get us closer to a cure.

Ride on!!

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Musings on the ice bucket….

Ice-Bucket-Challenge

I don’t suppose there is any way you could have missed this, because it has been EVERYWHERE. And every day, I think “Surely it is waning… I am seeing the last of it…”, but for weeks, I am consistently proven wrong.  It’s in the paper.  On the radio.  On TV news and talk shows. All over my facebook feed, my Instagram.  On the way home on Sunday night – I saw two different groups outside on their lawns doing it.  It’s somewhat of a recent obsession and I can’t stop thinking about it.

I can’t stop thinking about the Ice Bucket Challenge.

Had I written about this back when it first started crossing my consciousness – I suppose I could have culled a list of people I knew who had participated – and even thrown in a couple of – *gasp* – celebrities!  But now – it’s too massive and the impressive list of people who have joined this miraculous movement is far too ginormous to capture.  It’s so many well-known people now, that somebody has taken the time to make a list for Wikipedia. Some of my favorites have been Weird Al, Jack Black, and the Foo Fighters, who did sort of spoof on Carrie – and then challenged Stephen King to do the challenge (and he has also done his own video in response).  I could go on and on and on.

When I first started seeing these videos about a month ago – it was a general charity challenge not connected to a specific cause (and it also included the consumption of two beers along with the dousing of the ice bucket). I’m not sure where those came from – or if they were connected at all – or just a coincidental anomaly.

When I started really seeing these show up en -masse – I wanted to know how it originated.  What is the story behind the movement? Well, it is the story of Pete Frates - who is battling ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease.  He is newly married – expecting a child soon – and is not expected to live because the disease he has is a deadly one.  He is only 29 years old, and he is determined to make a BIG difference.  This movement began in support of him – by people who know him, love him and respect him – in response to his request that there be some urgency and action around making ALS a thing of the past.

As of this very moment (because it’s sure to change by the time it I hit the post button) – the ALS Association has raised $41.8 million dollars through existing donors and 739,275  new donors.  This is compared to $2.1 million during the same time last year.  Just writing that makes me want to cry for Pete Frates – for his family – for the people who know and love him,  for every person who loves somebody suffering from the disease or who has ever lost somebody to ALS. It makes me want to cry in solidarity for the gratitude they must feel to have not just the money – but the VOICE – of so many people saying it.  ALS. I am so happy to see all the people I know who have participated – Cheers to you all!!

Because I know how hard it is to watch somebody you love suffer from a disease that nobody seems to know about or pay attention to.  And I AM NOT comparing these two diseases – but people’s response is all about where they are coming from – and that is my origination.  No secret.  And I’m not the only JA Parent watching in wonder, and feeling the pangs of longing just a bit – eager to catch that viral trade wind to sail our little JA cause right into the mainstream.  Certainly, there are people passionate about other rare disease and lesser known causes doing the same thing.

So – I can’t stop thinking about it.  Examining it.  What was it about this donor centered campaign that resonated so well – that all of this could have happened?  It goes without saying that the cause it worthy… but given that so many people never even mentioned the disease in the early day videos – perhaps it wasn’t the biggest hook into this thing. There is some speculation that the timing was impeccable. It is summertime, after all – and what better time of year to engage in a little fun water play! And it is totally accessible – who doesn’t have some type of bucket or bowl and access to some ice?  It also plays on that quest we have to force other people to meet the challenge – to “call them out” publicly.  Naturally, I think it plays into something I believe in my heart and that is the fact that people, for the most part, are generous. They want to help when asked.  But there was something perfect about this time, this cause, this bucket bonanza – some magic – because otherwise, it certainly would have been done before.

There has been some pushback, naturally.  I know that my son is filming his challenge today with some friends – and here in California, you’d best be altering your challenge to capture the water for repurposing, or get lashed for contributing to our very serious drought.  And I have read that some people think that one social media campaign is really not good enough, given the seriousness of the disease – and have even pointed out that the challenge – in its common form – calls for the participant to do the bucket challenge or donate as a punishment for not completing the challenge – which isn’t the best message of philanthropy.  I think though, that even the people who were skeptical at first, have no interest in arguing against the potential benefit of $41.8 million dollars. It’s a success and I am just  happy for how much this has done.  I think people should watch this guy lead with a funny challenge intro and then talk about his ALS and how it devastates his family – if they have any doubt about why all of this was so important.

I do hope for the sake of every ALS warrior – that the movement continues.  I know it will be hard to ever live up to what this summer has meant for their cause… but if even a fraction of the 739 thousand new donors give again next year, or later….and if even one or two of those celebrities keeps talking about ALS, they will stay so much farther ahead of where they were in June.  What a beautiful, ongoing tribute to the passion of Pete Frates and his circle of influence.  Wouldn’t it be wonderful if this turned into a “ribbon season” for ALS… just like you can’t escape the pink ribbon in October – maybe summer will return again next year with ice buckets galore.  Maybe magic can stay.  Because what those warriors need is not just a summer of commitment from fickle hearts who will move along the trend highway – but season after season of people talking and giving and remembering them – until the disease is cured. Don’t get me wrong!  I would absolutely take one magical summer over a decade of shadowy struggle to get to the same place- but I hope this has some staying power.  Because the fight goes on.

And I have to admit – Personally, I have totally stopped trying to come up with whatever the next viral-social-media driven-philanthropic miracle of awareness and funding will be.  Honestly – I think given the total saturation, pun intended, of the public with this campaign – anything following too closely on the heels, or in format too similar,  will be met with bandwagon skepticism and snarky derision.

That’s not to say that I will stop thinking about it.  Or examining it.  Or trying to catch this summer lightning bug in a bottle so I can get a close look.  I think there will be another time when the stars align and magic is ready to commence again.  Because the take away for me is this – I guess it goes back to the famous Maraget Mead quote…

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”

This was grass-roots.  This started as  a bunch of people who did this for somebody they love – out of passion for him and for making a difference in the lives of others with the same disease. This wasn’t calculated, manipulated or engineered by peer-marketing reviews and test groups.  This was organic and it appealed and it just went. It was explosive – like a massive charge of dynamite. They did something silly, easy and fun to spread the word and raise some money for something serious, horrible, and barely spoken about.

I know a lot of people just like the people who love Pete Frates.  A lot of people with the same passion and drive to bring attention, bring funding, find the cause and find the cure for a disease that affects somebody they love. I see it every day – parents chipping away at this obstacle of juvenile arthritis – with lemonade stands, and speeches at the Rotary Club, and making videos to share their story – wearing T-shirts and wrist bands, beating the drum to bring the ears our way.  We may not have managed to get Oprah to respond, or have initiated a viral campaign that captured the news feed for week on end…. yet.  But there is every reason to keep going, with spoons or with dynamite – we will get through eventually.

I think Pete Frates just proved that we live in a world where that is possible.

 

 

 

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JA Conference in Keystone!

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So – Here we are again at our family reunion!

It was a bit of a journey to get here… 19 hours driving from California in the family minivan.  Caitlin rode out in another friend’s car – so it was just the boys, Dave and I.  I think we made it through Frozen and the Lego Movie before we even passed Las Vegas!  But there is a lot of beautiful land to see – and the boys were fairly patient.  And once we got here and started to see so many familiar faces, all those moments in the car that were a little nerve wracking melted away.

I started to get really excited and emotional once we hit the Colorado border.  It is one thing to keep up with people you care about virtually all year- commenting on their facebook posts or messaging every once in awhile.  It’s a whole different thing to be able to give them a hug, and see how much their kids have grown.  And I always look forward to meeting new people.

The opening dinner was last night – and 80’s themed party featuring a fantastic kids band KooKooKangaroo.  There was dancing and laughing – and lots of people with side ponytails and mullet wigs.  After dinner, kids got their first opportunity to go to the breakout rooms and meet people – and parents had a networking reception.  It was a great chance to relax and talk – and I got to meet several new families.  You could see that people had hard travel days (the traffic coming from Denver was so epic!!)- but it was a warm, breezy evening, and with 80’s music playing, we were able to hang out, chat and breathe deeply into the weekend.

This year is the 30th anniversary of this conference.  The very first conference was in this same location in 1984.  Later today, we will get to hear from a mom who was there, part of the original planning committee.  It’s hard to imagine what it was like then – before biologics, at a time when kids with arthritis were told to try not to move too much.  Can you imagine?? It makes me so very grateful for how far we have come.

It’s Independence Day today – and later, approximately 1000 people from 42 states- all part of this crazy JA Family will be celebrating together.  There are field day activities planned- and a BBQ dinner available – and fireworks over the lake at 9:15.  I know that I will be thinking about our country, and our history, and all of the men and women who have worked over the centuries to protect our freedoms…. but I will also be thinking of all the kids and young adults here, who strive to live their dreams, and overcome the challenges that JA brings.  I’ll be thinking about my own daughter – who once again is in remission and off all medications- and savoring the moments watching her celebrate with all her friends here.

I’m very grateful to the Arthritis Foundation, to all the sponsors, and to all the volunteers on the planning committee who worked so long and hard to make this all happen.  Having been a part of planning this conference twice, I will never underestimate the efforts that go into  all of this.  And I am also very thankful for all of the families that are here, and all the ones who are here in spirit- because it is the support that we give each other and the strength that we draw from this shared experience that is able to shine light on what might otherwise be a dark journey.  I have said before, there are blessings in this.

Happy 4th of July!!  Best hopes to you all for safe celebrations, good health, and shared blessings!

 

 

 

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I hope you dance….

271708326_i_hope_you_dance_lee_ann_womack_xlargeI wasn’t prepared to cry, really.  I was excited, and maybe a little bit nervous for her.  But I wasn’t prepared for the floodgate to open.

It was so simple and mundane – so normal for most parents.  Just one number with a beginning dance class in a two-hour performance.  Just one girl out of 50, dancing in a leopard tunic to another bombastic hip-hop tune.  Just four minutes.  Just a another high school show, parents and friends carrying the cellophane wrapped flowers and waiting by the stage door for all the “stars” to come out. My own parents must have done this same thing at least 50 times – because I was on stage from the time I was 12 all the way through college.

But this was so much more.

I realized it a little bit this week, as she brought girls home day after day to have snacks and put on costumes and make-up before the tech rehearsal and the dress rehearsals.  They had so much fun that they came over again before the shows Thursday and Friday – a little klatch of dancing cave girls – talking non-stop and building each other up with laughs, energy and camaraderie.  I realized it a little bit then, as I recognized in them that magic thing I have loved so many times in my life –  that thrill of performing, the safety of belonging with the group sharing the experience with you.  The excitement and vibrations of all the people backstage, the love you feel from the audience. And she was experiencing it for the first time.

But when it really hit me was when my eyes finally found her today, after frantically scanning the girls as they danced on and off.  I found her, dancing perfectly with an animated expression, her long blonde hair ratted to look like she was pre-historic, her face smeared with brown “dirt” smudges – and my emotions were stripped bare .  There she was kicking, turning, climbing the scaffolding! My eyes, though blurred with tears, never left her.  It was as if I was watching the final scene in some movie – and I could see all of these other scenes we had lived through to get to this moment flashing through my mind.

I was so emotional and could not stop myself.  My best friend was on one side, my husband on the other – and I was patting them because I know they know.  My mom was two seats down crying too.  She knows.

To me, it’s so much more than a high school dance show.  It’s quitting dance at 3 because she was diagnosed with JA – her little knees, still chubby with baby fat, too swollen and sore to allow those precious pink tights.  It’s quitting again at 7, after we already bought the butterfly costume for the big dance recital because her flare was soooooo very bad she could not do it – not do the little turns and stand on her toes – not lift her arms above her head.  It’s the years of physical therapy to keep her joints from having permanent contractures… The years of sitting out of P.E., dropping out of middle school dance because the pain was too great, almost as great as the pain of kids teasing her because she limped.

It’s not wanting to do drama, or choir – or anything really that would put her in front of people’s watching eyes – because she spends so much time just trying to not draw attention.  It’s hiding her reality from her peers – not mentioning the shots and infusions, the pills, the pain.  It’s sitting out too many times. It’s more than 12 years of systemic juvenile idiopathic arthritis.

It’s overcoming that.  Overcoming two hip replacement surgeries.  It’s auditioning for beginning dance and getting in – when 30% of the girls did not.  It’s insisting on being at school every day – not only because her dance teacher expects it, but because she loves it – she doesn’t want to miss out.  It’s being at a place, blessedly, where her arthritis is managed enough to allow all of this.

It’s fitting in.  It’s putting it out there.  It’s ice packs and rest and medicine at night, but getting up the next day excited to do it again.  It’s her – printing out schedules for local dance schools now – telling me she’d like to take some extra classes.  It’s talk of trying out for Intermediate II Dance next year – when PE won’t even be a requirement anymore.

When I think of all the times I had this dream for her, and stopped myself because the reality seemed to be something else….when I think of all the times I carried her and simply walking seemed to be a lofty goal. Dance was like fantasy fiction….

This was not just a four minute number in a high school dance show.  It’s so much more!

Today, it feels like a happy ending to the movie in my head.  It feels like a miracle.

Posted in Dealing with the public, Overcoming obstacles | Tagged , | 11 Comments

The party’s over….or at least on hiatus

parties overWell, it’s been two years since Caitlin had her last infusion of Actemra.  Two years since she took her last dose of methotrexate.   Two great years of remission – of vacation from almost everything we lived with her systemic juvenile arthritis.  It’s been blissful – a blessing I have tried never to take for granted.  But now, it looks like we’ll be taking a little break from our break.  A lull in the party so to speak.

She started having problems about six weeks ago.  But with school starting, and her being in Dance (the first physical education class she has had in three years) – I figured there were plenty of reasons for fatigue and swelling.  Activity induced, we hoped.  Ice, rest and over the counter anti-inflammatories- we assured ourselves – would keep us in the beautiful land of remission.  A trip to the rheumy then revealed swelling in fingers, wrists, elbows, one knee, both ankles…. The labs were slightly elevated.  Nothing to be alarmed over.  We opted for one quick pulse of prednisone hoping to get back to shore, back to the balmy, calm land of remission.

A week after the pred pulse (which is another story on its own.  Let’s just say that normal 15-year-old girlitude + pred = not very pleasant) – she was already having problems again.  I tried to stay positive – and keep her positive.  I guess that was interpreted as my refusal to believe that her arthritis was coming back, because I overheard her tell my friend,  “I’d be better if somebody would let me get back on the medication I need.”  Yeah!  That’s me!  The one who never seeks treatment for this poor girl!  Right. Second pred pulse 21 days after the first finished and then, back to the rheumy.

It’s been a long time coming – this transition period where I learn to keep my mouth shut, and let this soon-to-be woman have her own discussions about her own health.  I’m not very good at shutting up – and she is not always good at verbalizing.  More often than not – she stares blankly at the doctor’s question, and then stares at me with a “well, what are you waiting for?” look. I am amazed at how much she does not remember.  Sometimes, I think she would forget that she has titanium hips if we didn’t talk about it.   Not this time.

The labs are worse.  Nothing to get crazy about – but still, not going the right direction.  They certainly should have been better five days after finishing 90 mg of pred for five days straight.  The joints also have not improved much.  She explained the morning stiffness (3 hours?  I didn’t know…) and the fact that even on the pred, she was still in pain. “I need to be better.  I need to be able to get up off the floor in dance.  Some of my classes are upstairs.  I’m having problems holding pencils….” – she poured out the details of her days.

He suggested Actemra again.  No infusions, she said.  Unless the clinic is open in the evening or on the weekends, she’s not willing to miss school.  Well, he suggested… it’s been so long since she was on a TNF drug.  She is almost more poly now than systemic – no fevers, rashes or organ involvement.  Maybe she would respond to one of those?  OK, she said.  As long as it is injections at home.  Then, a discussion about Enbrel vs. Humira.  Still, I said nothing, knowing full well she does not remember either of those.  She was only four when she took Enbrel- and it was the only biologic on the market.  She was nine when she last took Humira – and does not remember hiding in the closet, screaming because she hated the way it burned.  She doesn’t remember that her baby brother hid under the kitchen table because it scared him so much to see her scream and cry.  She doesn’t remember.  But I do.  I said nothing.

Four choices, he said.

First choice – do nothing.  Not an option – she interjected.

Second choice – Humira alone.

Third choice – Humira with methotrexate. The mtx will take several months to get up to speed, but maybe we’ll be able to spread the Humira out again and wean down to just the mtx.

Fourth choice- another pulse of pred and hope for the best.  No way, she said.

So, option 3 is it.  That’s what she chose.  Methotrexate – oral for now and Humira, every other week.  The nurse quickly wrote the necessary prescriptions and warned me that this could take several weeks. I already got her a TB test last week, because I had a feeling that this might happen…. but it might take a while for insurance to approve and our pharmacy to ship.

“What am I supposed to do in the meantime?” she asked. Then a discussion about all of the pain meds she has taken followed, from ultram to vicodin – and ultimately, she decided she can wait. “I feel like my head is cloudy enough with all my classes as it is!”  Ha, ha.

As we drove home, I had the strangest emotions.  Given the fact that I was always told this day would come – I guess I am not terribly surprised.  But… I was gifted with a perspective this week that softens this transition so much, it barely touches us.  There was a lovely young girl, 12 years old – who passed away last week from complications from forms of arthritis.  Her disease was referred to as overlap syndrome – and I know she had many rare complications- I believe Scleroderma may have been involved as well.  I attended the rosary service for this young beauty – and felt keenly what the loss of her life means to her family and friends.  I have thought of them all week.

We are all entitled to our own response to our own situation.  Just because somebody else has it worse, does not mean we are not entitled to be bummed out about our own deal.  That being said… I have spent so many moments this week being grateful for the lives of my children – the idea of getting back on the arthritis roller coaster just didn’t hit me as hard as it might have two weeks ago.  Or maybe two weeks from now.  Who knows?

Maybe too… the idea of these injections don’t seem as horrifying with my 15-year-old daughter – who has already weathered so much more – as they seemed with those pudgy little five-year old legs.  I’m guessing she won’t want Princess bandaids this time around!  It used to be one of the few things she could control was the band aid…and which leg.

Instead of feeling the things I thought I would feel (ie: anger, frustration, depression) – I just sort of feel like when it’s the Sunday night of vacation and you all of a sudden remember the things you meant to do.  How you meant to clean out the closet, or read that book, or get the oil changed or whatever… the things that you can’t quite manage to fit in to your everyday life.  Except, it’s too late now. I sort of feel like that.  I’m not sure what it was we didn’t manage to do…. it just feels like something.

Maybe what I should call it is Denial.  Because honestly – I don’t believe this will be a long break from our break.

And actually – the whole appointment where Caitlin spoke up, and made her own decision – and was clear, definitive and decisive – HUGE Victory!

Even more – the process of getting our hands on this medication has been so smooth, I almost feel guilty for my good luck.  Our appointment was Wednesday…. and the nurse warned me.  At least two weeks she said. But then she called Thursday morning – to tell me that the prescription had already been approved by insurance and forwarded to Caremark, my online/mail pharmacy.  Thursday evening, I got a lovely call from Caremark.  In a matter of twenty minutes, I was registered AND she had applied the Humira patient assistance discount to the order (final total $15 for 90 day supply!!!!!!) AND she offered to include alcohol wipes and a sharps container for no charge.  It all arrived this afternoon.  48 hours after the appointment.  Crazy, right?

At this moment – it all feels like it will be OK.  I really don’t have any medical reason to believe that honestly.  Reading the history here, Caitlin has never had a remarkable response to any medication.  Her periods of remission have been more mystery than mappable.  But – we don’t need a miraculous response yet.  Just a little push.  A nudge.

For now, I’m calling this a hiatus. A break from our break.  I’m banking on getting back to those beautiful sandy beaches… and even though we’re all fine with our swim right now,  I reserve my right to scream if I decide that this water is too dang cold and choppy.  I know my JA Family will forgive me…and throw me a life-preserver.

Posted in Flares, Humira, Methotrexate, Pain, Prednisone, Remission | Tagged , | 16 Comments