Hope is a Journey….


FREEDOM…it’s a word that is often taken for granted.  It’s a word full of incredible possibilities.  It’s a word that holds so much promise. It’s a word that, to some is always just beyond their reach.

This weekend, our family got to witness FREEDOM in it’s essence.  We experienced FREEDOM in our own way….and we were surrounded by many others who were basking in the joy of that sweet, sweet FREEDOM.

You see, this weekend, our family participated in the Metabolic Family Weekend at Paul Newman’s “Hole in the Wall Gang Camp” in CT.  Paul founded this camp based on his passion for giving children and families with serious illnesses a place to enjoy FREEDOM in a safe and fun environment.  I have had many friends attend this camp (and rave about this camp), but our family has never attended…until now.

Hole in the Wall Gang Camp Family Metabolic Weekend 2012

It seemed like the stars all fell in line this past week.  For the first time in a year and a half everyone was well and my body was not in crisis.  For those who have been following along, it’s been a rough go…with one thing after another – so we knew that it was simply, ‘meant to be’ when we got the call that we were accepted into the camp for the family weekend.  Despite my apprehension over being far away from all our medical safety nets, we put both feet forward and took a leap of faith, and boy am I so glad we did!

The week leading up to camp was school vacation, and we took full advantage of the fact that things were going so well for all of us (minus a mini cold for Sasha) and we had 2 mini birthday parties,

We went to the circus…

The Zoo…

We ventured the farm,

Took our first trip together as a family on the Train…

Explored the Museum of Science…(details for all of that in a later post!)

And ended our week with camp.  To say that this has been the week that our family SO desperately needed is beyond an understatement.  I can’t even begin to tell you how thankful I am that we were given the blessing of good health all at the same time so we could – for the first time in years – truly ENJOY a school vacation with the kids!

What was so special about this weekend was that every family that attended this camp was on the same road that we were….uncertainty, struggle, medical adversity, heartache, the loss of predictability (missed birthdays, holidays, special events due to medical crisis or the fact that traveling with medical challenges was too difficult), strength, resilience, courage, humility, and HOPE.  We were surrounded by people that ‘Got It‘ in a way that most around us just can’t….not for lack of trying or lack of desire to understand – but because they don’t live it.  I can’t even begin to tell you how inspiring and uplifting it was to feel SO FREE and SO SAFE to be SO FREE.

Our day on Friday was a flurry of packing and getting ready for the weekend.  We packed our stuff, the kids and Beast in the car and departed a little after 4:30.  The kids had NO idea where we were headed….which made it all the more exciting for us (and them)! We hit a bit of traffic on the way there (rush hour on a Friday….of course) and ended up arriving late.  Will’s initial response when he learned we were at ‘Camp’ was “No way, I’m NOT sleeping here!!!!” – it was awful comical.  Sasha was excited but in all reality, she likely had no idea what “Camp” meant.

We were introduced to our “Family Pal” Lindsay – she was our ‘shadow’ all weekend and helped our family get around camp and also helped take care of the kids and watch over them – which also gave Ralph and I a little extra breathing room (very unexpected but welcome!).  She was absolutely fantastic and the kids adored her!

We headed into the dining hall and joined in on the festivities that were already taking place, and I ran into 3 of my friends (Nancy, Andy, and Karen) almost immediately!  We then were introduced to the Camp, the schedule for the evening, and we learned a few “Camp” past times….like – shaking your “Bushy Tail” if you go in the wrong door for the dining hall (there’s one side for ‘in’ and one side for ‘out’ – and if you get caught going in the wrong way, you have to sing along with a song and do a dance (Shake your Bushy Tail!) with all the others who have done so).  It’s pretty cute and the kids got a kick out of it.

We had an indoor ‘camp fire’ and then headed back to our cabins to meet our ‘Cabin Mates’ and get some rest…Saturday was going to be a busy day!

Our “Cabin Mates” were from Ohio and we hit it off right away.  They had a boy and a girl – the boy was Sasha’s age and the girl was Will’s age.  A perfect match for us!

We headed into our room – the kids were stoked – it was full of 4 bunk beds and 2 stand alone beds.  Of course, both kids wanted to be on the top bunks!  We attempted to put the kids to bed around 10….and, from 10 p.m. until almost midnight, we proceeded to go back and forth with the kids about going to sleep.  Will was wired for sound and Sasha was annoyed at her brother’s constant gabbing and her sudden onset of constant coughing.  Finally, both drifted off to sleep – although Ralph and I got very little sleep – Sasha’s coughing kept me up (I was in the bed next to hers) and Will’s wiggle worming and yapping in his sleep kept Ralph up (who, for reasons STILL unknown to me – picked the bed BELOW Will!!!!)

Will woke up bright and early asking if it was time to get up….OYE…..not even close kid!!!!!

After a tummy stuffing breakfast, Sasha and Lindsay headed out to Arts and Crafts and then down to the Tower – at which time she attempted to climb up the steepest rock climbing wall (30 feet straight up)…and, apparently did pretty well….until she looked down and panicked! Will went with Ralph to the wood working shop and built a bird house…they were very intensely involved in that! I ended up catching up with an old friend and then heading over to watch some of the campers record some pretty amazing music in the recording studio.  After that, we all met back up and got ready for lunch.

Just before lunch, we got a special treat from a local Glee Club – which Sasha really enjoyed.  After that was over, we headed over to the dining hall for lunch.  When lunch was done, we all participated in lots of singing, dancing, and silliness.  Sasha was clearly in her element….

We then had a quiet hour.  Lindsay hung out with the kids and Ralph and I attended a parent group – which was a really great way to get to have some time with the parents, I wish that more had been there as it was so neat to meet so many people from so many different places!

After quiet hour, we headed down to the docks and did a little fishing.

This was clearly a HUGE hit with BOTH kids!  Sasha was in LOVE with all the ‘bait’ fishies (as she called them)….and she was dubbed the ‘bait whisperer‘ as she could reach into that bin (quite fearlessly) and yank out a fish in no time flat!

Both kids were brimming with excitement as they caught their first fish…and then the second….and even when others were catching fish. It was so cool to see the joy just take over and see them light up over something as simple as ‘fishing.’  It was pure FREEDOM!

We headed over to the ‘Tower’ at 3:45 to climb the rock wall and do the zip line.

I was SO excited for this part of the day.  It was the ONE thing I had vowed we would all do – even if we were scared to do it.  I wanted us to learn to move past our fears and experience new things….and give them a chance to grow on us and open new doors for us.  I have always wanted to do rock climbing but have never done it…and I have ALWAYS wanted to go down a zip line…even though I am pretty scared of heights!

Ralph went up first (and he dominated the rock climbing wall – zipping up it like it was a little tiny hill!),

Sasha was ‘flown’ up (pulled straight up to the top) – which I was okay with because she attempted the wall earlier in the day.

 And Will was her anchor….so sweet!

All while Beast, Dr. Fun (That’s what I called him anyway!), and my friend’s 2 sons (and a staffer) watched on.

She and Ralph were tethered together and zipped down the hill at lightening speed. Sasha was pretty petrified at first, but – towards the end, she was enjoying it.

Will went up next (though he initially did NOT want to climb the wall – but, with a little encouragement from me and the other kids and parents, he attempted it and was successful!

Next up was me….I hadn’t been feeling 100%, but I wasn’t going to let that stop me – I was SO excited to give this a try.  I was suited up and then went over the cues (boost = I need a little help to get to the next foot hold and ‘elevator’ means I was all done climbing and needed to be ‘flown’ up).

I looked up at the wall, took a deep breath and began climbing.

It felt so natural to me….I just focused on the grips and kept going.

About 3/4 of the way up, I started feeling really crummy – but I wasn’t about to stop…..nope, I am a glutton for punishment!

I made it to the top nearly as fast as Ralph did (surprising me AND everyone else) – and, as soon as I hit the top, I started feeling terrible.

At the top, I couldn’t do anything but lay flat.  Will was kneeling over me asking if I was okay and I couldn’t even talk – but I wanted him to not be afraid, so I gave him a thumbs up and just tried to breathe through it…knowing I was on the verge of a full on out crisis.

Will putting my hand on my knees - as all I could do at that point was lay down....

After 10 or so minutes, I realized it wasn’t going to pass anytime soon, so I sat up – gave a very worried Ralph a wave to show him I was hanging in there….had them tether me to Will and we zipped down.

It was AWESOME…but I truly wish that I had let them just ‘fly’ me up so I could REALLY have enjoyed that ride down.

When I reached the bottom of the zip line there were 3 nurses waiting for me, and apparently I looked as bad as I felt – despite me trying to smile through it so Will wouldn’t worry.  I don’t remember much – I just remember one of them asking me if I was okay and I couldn’t even talk – I just shook my head ‘no.’  I believe, at one point, there were 2 of the doctors and 3 of the nurses with me (though it’s all pretty fuzzy) and I was just so nauseous, dizzy, disoriented, short of breath, and confused that all I could do was just lay there….I wasn’t much help.  Thankfully, Ralph made his way over to me and he was able to tell them that it was likely my preload failure, the rapid stress on the body and – compounding it all – was the fact that I was also very cold – which I do not physically handle well at all.  Ralph suggested they take me back to the cabin and put me in the bathroom (it was a sauna in there!) to warm me up…so that’s just what we did. I can’t say enough about how awesome the staff was getting me through the crisis and how willing they were to take the kids so Ralph could stay with me and neither of us would feel rushed into doing something my body wasn’t ready to do.  Dr. Kelly, Alix, and Juli were fantastic and cool as cucumbers despite everything and Juli stayed behind once I started feeling like the worst had passed.  After about 2 1/2 hours or so, I could think clearly, talk clearly, walk pretty well, and the shortness of breath and nausea was much better. I told Ralph it was time for us to go rejoin the group so the kids could enjoy the ‘Carnival’ – so off we went.  On the way up to the Carnival, Ralph said to me, “Well, I was really nervous about how they’d handle Will and his medical issues if something came up, but after seeing how well they handled you, I KNOW that they will do just fine with Will.  I actually feel a whole lot better because of what happened this afternoon….sorry you had to go through that, but seeing them in action really put my mind at ease.”  Honestly, I have to agree 100% – these people are amazing when it comes to knowing what to do in a crisis!

After the ‘Carnival’ we headed back to our cabin and hung out with our cabin mates from Ohio….they were awesome! The kids played with their Team Pal, Lindsay for a while the adults chatted.  Sasha had been coughing a little bit and we didn’t want a repeat of the night before, so 2 nurses came down and phoned in to the doctor on site and they got the order to give her a breathing treatment.  We are SO glad that we did it this way because it really did help.  She only woke me once in the middle of the night coughing!

Sunday was our final day at camp.  We woke to a dreary, damp and cool day…and heavy rain was in the forecast.  We made our way to the dining hall and the kids enjoyed a yummy breakfast.

After breakfast was over, Sasha and Will both stated that they wanted to go fishing again.  Had it been warmer or not as damp, I wouldn’t have cringed so much as the boat docks were a lot of fun….BUT…this wasn’t about ME or my level of warmth, this was about the kids having fun and having fun with US….so, I bundled up like an eskimo and we headed on down.

Weepee...the Lake Mascot

Sasha rushed to the bait cooler (of course) and dove hands first into the freezing water and instantly pulled up a shiner asking who needed a bait fish.  It was so cute!

Will was ready to get down to business and catch “Weepie”

Will got a bite on his line…and they reeled it in as fast as they could…but it got away!

 Sasha caught her own big fish….

Will got another bite on his line and you could tell the fish was gigantic because it nearly bent the pole in half!  As it got closer, you could see how huge the fish was – and it was SO big that it snapped the line!

Ralph showing where the line snapped

Will vowed not to leave until he caught a big fish…maybe even the one that broke his line (maybe it was Weepie???!?!)
Finally, another bite!  Everyone cheered on Will as he reeled it in and McGee (the Boat Dock Warden) bent over to scoop it up in the net.  As he did so, he lost his footing (the fish was heavy!) and started to go overboard!  Thankfully, Ralph was right next to him and grabbed the back of his life jacket and pulled him back over the edge!

Everyone cheered and Will got to pose in front of his BIG fish!

Even Beast got in on the action…..

He was quite unsure what all these things with fins were….

But after a tail slap in the face…he was happy just looking on.

The kids said goodbye to their favorite Boat Dock Warden and we headed up to the Wood Shop/Arts and Crafts cabins so the kids could finish the projects they had started the day before.  Thankfully the rain held off until we got inside…then it poured!

Will finished up his bird house that he built from scratch with Ralph…

And Sasha made me a beautiful Duct Tape Flower (that I know our good friend Rachael will be SO proud of!).

We headed over for lunch at the dining hall and closed the weekend out with some music and silliness.

The kids got to say their goodbyes to the staffers…

And they got pictures with their 2 favorite Pals…

And Lindsay:

Sasha was very sad to leave the camp, and Will was pumped to return in the Summer.

As we drove away from the Hole in the Wall Gang Camp, I reflected upon the one continuous thread for the entire weekend….FREEDOM.

You see…every single family that went to that camp got an entire weekend to be FREE to forget the tough times and create joyful times in a safe and fun environment.

We all had the blessing and the opportunity to shed our medical shells that we have built our worlds around (out of necessity) and find FREEDOM in letting go….knowing that we all had a safety net to catch us…which gave us permission to find laughter and wonder in the most unsuspecting places.

We were surrounded by 21 other families walking a similar journey as ours…and that gave us the FREEDOM to just ‘be’ – without fear of judgment, questions, or strange looks.

It truly was a weekend that was just as much FREEING as it was HEALING – not just for our family, but for all the families there.

Will and Sasha came to the Hole in the Wall Gang Camp with their own assumptions about who they were, what they could and couldn’t do, and they had fears about things that Ralph and I alone couldn’t rationalize out of them…but the camp, the staff at the camp, the families at the camp, the experiences they had at camp, and us being together at camp taught them that, even though they had a lot of things they weren’t able to do…there was SO MUCH that they COULD do – and you could see them shed all their fears and expectations away layer by layer and the FREEDOM that clothed them as awe inspiring.  It was truly priceless.

FREEDOM is a beautiful thing…and something that should be cherished, nurtured, appreciated, and shared.

This weekend, our FREEDOM was rekindled…and words truly cannot even begin to express our gratitude for the opportunity that we were given by the Hole in the Wall Gang Camp, their staff, and the families that we met there.

To see ALL the pictures from our AWESOME weekend – click HERE

Love and Light,


*The Hole in the Wall Gang Camp is a non-profit organization that provides individuals and families the opportunity to go to camp at no cost.  If you would like to make a donation to this incredible organization to help them continue their mission, please click HERE.

Comments on: "FREEDOM" (3)

  1. There is no way to express my joy in your Freedom Weekend and all the fun and freedom it brought you and your family. You’ve been long overdue for some timeout from your ongoing struggles and it sounds like this was what you needed: a place that gave you safety and support so you could just enjoy to the fullest all the fun activities (and feel secure doing so). Thank you for sharing your adventures with us! Love &Blessings, Nynah

  2. Dave MunrI said:

    Thanks for taking us inside the camp, looks awesome!

  3. How awesome is that? It looks amazing just seeing the pictures. The joy jumps right off the page. What a wonderful place!

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