5.04.2012

Happy Hand Campers, Part 2 (much happier)

Well.
After that first rough night under the stars... camp could only get better from there!
(I looked into hotels for night two for Ellie & I.  But the nearest one was nearly 40 minutes away.  Thankfully, the camp directors found an empty little private room for us.  She was able to go to sleep closer to her bedtime and with a night light on and quiet in the cabin... she slept all night (inside!!) as did I.  It was glorious.  Meanwhile, Will didn't have to leave early and got to go to the party the last night.  Rumor has it he was the life of the party.)


I realized after leaving camp that most of our friends will never see their child experience camp for the first time.  They will drop them off and they will pick them up a week later and hear all about it.  But they won't be an eye witness.
R and I were privilged to watch Will experience camp for the first time.
(Technically - it's his second time as he did go to Baby Day at Out on a Limb Camp.  But he was 10 months old at that time and therefore doesn't remember it.  That was more beneficial for me to meet other moms than it was for him, obviously.)
We watched as he woke up in a cabin and his eyes grew big and his smile spread huge as he realized there was another kid in the bed right beside him. 
We watched as he loved sharing every meal with other campers.
We were there to answer as he asked permission for everything...
May I jump on the bed with friends?  No.  Thanks for asking.
May I run to the cafeteria with my friend?  Yes.  Have fun.  Save us seats.
May I eat the cookie? Of course.
Can I have a sprite?  Yep.  You're at camp!
(I love this age.)
We watched as he interacted with counselors.
We watched as he did the limbo at the last night party.  R said he was the life of the party.
It was really fun to be an observer of our son - to watch him experience these special firsts of the camp experience.  

He loved walking around camp with his new friends.

 It was an interesting experience.  I'm not sure I can do it justice here but I want to get my words and thoughts out.

I think that I had kind of a high expectation- a high expectation that at Hand Camp, we would, for once, be like everyone else.  That no one would stare or ask questions or point.  We would just be a family at a camp on a random April weekend.
But.
There was actually lots of staring and questions.  Lots. Because this was Hand Camp.  So everyone had hand differences.  But not a single other camper had feet differences too.  Not a single one.
 And most only had one hand difference.
 So we really kind of stood out.
(not to mention the fact that we also had a sibling of a camper who herself has a medical condition.)

 And while I would have thought that kids who are used to being different and therefore dealing with questions and stares would be less likely to stare or question, that thinking was proved very wrong.

 Perhaps the fact that these kiddos are so used to answering questions about themselves made them feel more comfortable touching Will's zancos, asking questions, and making comments?  Or maybe it was just that he was totally new - we knew no other campers.  
Will did great.  He answered their questions and none of the children were rude.  It was just incessant  at some points during camp.  Thankfully, all of the children ultimately came to the conclusion that they liked his "little feet/special feet/helper feet" (they had lots of names for them) so that was good.  I think I had expected this to be a "safe" place - one where he (& we) didn't have to deal with this like we do in everyday life and that was not the case.  At all.
(for the record, there is a camp for kids with limb differences that includes more kids with prosthetic legs... Out on a Limb Camp.  We attended that a few years ago but only for one night due to Will's age.  He is still not old enough to go all week there and he would only be allowed to take one parent and the one night date doesn't work for our calendar this year.  Interestingly, as I recall from 2008 when we were there for Baby Day, very few of those campers also had hand or arm differences.  So perhaps we would still stand out there?)

For next time, I'll know to prepare myself & Will for the barrage of questions.  And comments.  And stares.  And grabbing.  And maybe if my heart is prepared, it won't hurt as much that even at a camp for kids with differences, my kid has to deal with being "more" different.


I was so very thankful for this counselor:
She had a hand difference and a foot difference!  She was the only other person there in a prosthetic that looked just like Will's.  This was her first time at camp and she came from MS to be a counselor! We were so thankful for her and for her funny stories and energetic personality - perfect for a four year old's counselor.  Will loved her and later told me she was his favorite counselor.

Interestingly, several of the teenage counselors with differences shared how they internally kind of rank each other in terms of who is the most different and therefore has more challenges.  It was reassuring to hear this voiced out loud!
I think, as parents and as humans, that many of us probably do this.  We make ourselves feel better about our challenges by thinking others have it much harder.
Or perhaps we validate our own fears and worries and difficult days by affirming to ourselves that others don't have nearly the difficult journey that we do.
I suppose it goes both ways.
Regardless, it is comparing and it can be dangerous.  At least for me.
I admit that at camp, my mind instantly went into a comparison mode - noting how grateful again I am for elbows for each of my kids.  Elbows are really underestimated, I think.  Until you nearly don't have them or until you have a child with limited range in her elbows, you just don't know to give them so much credit!
I noted too, however, that no other child had feet differences.  And few had both hands affected.  I have to be very careful when I start making those sorts of comparisons.  I don't want to compare my child to others or rank his challenges.  It is what it is.
But I suppose it was reassuring to me to hear that others do the same thing - and the teenagers shared their rankings with such grace and humor and it was comforting to me to hear.
I think I've needed more humor in my life.

The camp had different activities we could choose from.  When we applied, Will was most interested in archery and we checked that off on the application. He's been telling nurses and doctors and grandparents that he was going to go to camp and have someone teach him how to do archery.  We've had a hard time figuring this out with hand differences so we were all excited for the hand difference experts at hand camp to help him out.
Unfortunately, upon arrival at camp, we were informed that the camper had to be age 9 to do archery!  I wish they would have clarified that on the application as he was a very disappointed little boy.  (The ropes course has a minimum age and that was listed on the application for some reason. No age min was listed for archery. :()

So, we chose art for our first activity.


 Will made a very original piece of art:  the "angry beetle"
One counselor shared with R how much he liked Will's art.  It didn't fit the "theme" of most of the other masterpieces (all of the family's handprints) and it may not be framed above my mantle... it's a scary angry beetle!  But.  It was all Will's creativity.  We let him choose and go with what he was wanting to do at that moment.  And he does love bugs.
 In between the family activities, there were breakout sessions for parents and the kids got to hang out with the counselors - mostly teenagers and college kids with hand differences.
Will LOVED this part!

Several years ago, someone put me in touch with a woman in our West Texas city who had children with limb differences.  She was a huge encouragement to me and had great advice and insight and stories.  Then, about two years later, Will & I ran into her son at a pharmacy and met him.

We were so surprised and excited to see him at camp & for Will to actually meet him!
 Now a junior in college, he is studying to be an occupational therapist.

The last night of camp, my eloquent little four year old, sometimes wise beyond his years, walked up to him and said,
"J, when you were four, did kids tell you you only have two fingers even though you have more?  And what did you say to them?"

I was so proud of Will and his ability to express himself and his confidence in himself to seek answers to something that really bothers him.
J got right down to his level and answered him and encouraged him and I watched as Will just grew before my eyes.  He just needed someone to look up to - someone who has quite literally walked in his shoes.

I can't do that for Will.  I can give him my answers and I can point him to truth.  But I haven't been there.  I don't know what it is like to be four and to be different.
So finding someone who does- that is such a gift for my child.  (And for me.)

 The counselors were my favorite part too.  I just loved watching Will be around older kids - kids who are making good decisions in life and who are teenagers yet want to invest their precious weekend time in encouraging little kids with differences.  Kids who have dealt with teasing and bullying and figuring out new ways to do life and doctors and therapies and who know the feelings and emotions and challenges of being different.
But they are also kids who are first chair in their state's band, kids who play football and karate and who are in college or going to college next year, who take AP classes, who drive, who text, who have friends and dates and dreams.
They are just typical teenagers.
Actually.  They aren't so typical.  They are empathetic to others and compassionate.  They put others ahead of themselves for this weekend.  They invest their time in younger kids.  They had a maturity in talking to adults that was very impressive.  They carried themselves with confidence and poise and they found humor in life.

Many of them have grown up as campers here together so they have been life long friends.  I couldn't help but flash forward - wondering if someday Will too would be a counselor and would have some life long friends from hand camp.
Yes.  This was my favorite part - watching Will from a distance as he hung out with these teenagers and learned from them and was encouraged by them.
And hoping that someday, he too, will be making good decisions and will want to spend his spring weekend hanging out with little kids & encouraging moms and dads.


 We all took extra long naps on Saturday (wonder why) and skipped one of our activities.  We caught up, however, in the sports barn.
 It cracked me up when these two boys voluntarily sat down to roll the ball with Ellie.
 working on walking

 At breakfast one morning, doing his Kung Fu for some of the counselors


 Showing off some skills for the counselors
Several of the little boys realized they could climb up the walls of the cabins.


 Will was so proud of himself for doing it all by himself!

 Within minutes of leaving camp, I turned around in the car to see this:



In some ways, the hand camp experience was bittersweet.
Our reason for being there, for instance.
R and I both agreed that while it was such a cool opportunity, the fact that there is a camp for kids with hand differences and that we fall into that category just seemed surreal to us.

Yet we were so thankful for the opportunity to hang out with other parents who get it.  They get our world - our fears and our struggles and our unique challenges.  Say the word "kindergarten" to any parent of a child with a limb difference and I promise the first thing that goes through their mind is not just that their baby is growing up but is that Oh My Goodness - the kids and the questions and the teasing and the challenges and will he/she be accepted?
It's so refreshing and comforting to be around others who just get it.
They know the highs and the lows and they've cried the tears and prayed the desperate prayers and understand how somehow grief and joy can go hand in hand.
Our hearts are linked instantly, I think, by this shared experience- even when we don't know their names.  
And we wouldn't change it for the world.
I just can't explain how empowering and encouraging it is to be surrounded by others who simply get it.

And the counselors?
Definitely my favorite part.  There was a breakout session for parents when several of the counselors sat on a panel.  We divided into two rooms - moms & dads.  And there were two panels - a girls one and a guys one.  They switched rooms half way through and bless their hearts, they sat in front of us and we asked the hard questions.  We asked what their parents did that was good or what they regretted.  We asked about school and teachers.  We asked about bullying.  We asked about dating.  We laughed a lot.  Some of us may have cried a little.  Their insight was invaluable.  Their honesty refreshing.  

The next morning, several of their parents travelled to camp and assembled another panel.  This time, we asked similar questions but directed to parents who are further ahead of us in this journey.  These parents have been where we sat.  They know first hand our fears and challenges and aches and joys - unlike any other person.  Their wisdom and encouragement was so meaningful.

Monthly, we skype with a dear man in another country who generously invests his time in getting to know Will over the computer.  Will's favorite part of that conversation online is always when they high five.  
Because his friend in that far away country has a hand just like one of Will's hands.  So Will repeatedly asks to high five him on the computer screen.




Imagine if you never saw someone with hands or feet like you.  Imagine if every single place you went, you saw people who all pretty much look alike... and yet you don't.  Imagine if at the park, the store, the beach, the hotel, the hospital, the school, even in the comfort of your own home... everywhere you went, you were different.
Imagine if every time you high -fived a friend, shook a hand of a stranger, held your mom's hand, played with your sister, or played patty cake with your grandmother, your hand was different from theirs. 
Imagine if every time you saw a handprint or footprint it didn't match yours.  Imagine if you held your pencil differently, your fork differently, your cup differently, your toys differently, if the way you opened the door was different, how you put on your clothes or brushed your teeth was different.

Pretty soon it becomes your normal.

It's just your life and so you get used to it.
And you get used to the stares and questions because, frankly, that's part of the normal of being the one who is different.

Imagine if that were you or your child.
(And if it were, imagine if it took you awhile to come up with that list above because it seems so normal to you now that you don't even really think about all those things that the rest of the world must look at and see as different.)

And then, 
imagine if, for the first time in your life of 4 years and 8 months, seeing someone with a hand exactly like yours in real life.
Imagine giving them a high five.
And really touching that hand with that high five.

I stopped the counselor, C.  I had questions and furiously took notes as he described a recent surgery - something we are considering doing for Will someday.  I asked him about writing.  I had never in person seen a hand that looked so similar to Will's.  He graciously humored me and answered my questions.  
He is in high school planning for college soon.  He dates and has a full calendar.  He plays golf competitively and takes difficult classes.

But he took the time to be there for my son.

And my Will looked into his eyes and then he looked at me.
His eyes grew big.  His smile grew big.
He knew.  
He exclaimed, "You have a hand just like me!"
And he laughed so freely - with such joy and abandon at perhaps realizing he's not alone.  
He found someone who shares his normal.

And  then they high-fived.

My heart soared that day.

That is what Hand Camp did for us.

5 thoughts:

ywilbur said...

Ok. I love your long posts! But sometimes I can't make it through without commenting...so could be more to come!

Kharan gets so many questions too due to multiple limbs. Kharan also points out every person we pass with missing limbs too though. What you describe with all the questions was Kharan's first year in America! Everywhere we went. Now that he is older not so much. I think that outgoing, life of party kids (like Will and Kharan) seem more approachable? Kids never seemed embarrassed at all when Kharan was younger but now that he is older and a bit more reserved they don't approach as much.

You need to come to Camp No Limits! Kharan had met my friend's husband right off the plane from Russia who is missing right below elbow and that was his first meeting with someone with at least one limb like his. But at Camp No Limits I was surprised at how many had multiple missing limbs and older counselors too which helps kids adjust.

We walked in and up came Cameron Clapp to buffet line right off and started talking to Kharan . That was great to have confident multiple limb loss role models: Josh Kennison was there too and between him and Cameron (who Kharan called with his limited English at time 'my boy'). Aside from the kids I was just thrilled to have so many positive male role models in general there: the PT guys were great, etc...Sorry turned into ramble.

Can't wait to finish reading!

Mike and Christie said...

Katie, we want you to come to out on a limb camp next year!!!!!!
You can most likely bring Ellie too... (it has been done before) :)
There are several kids at out on a limb with hand differences and leg differences or no arms at all.
Sarah has hand differences and prosthetics, so she goes to Out on a Limb with Erika. Erika is the only one with Arthrogryposis though.
I would actually say the majority of the kids have hand differences and prosthetics. It just isn't that noticeable when they are all having so much fun. :) I remember Will on baby day. He was SOOOO CUTE! Still is. :)

ywilbur said...

Was the beetle angry for missing archery? Do they have camps for kids with arthrogryposis?- just curious

Kharan said after karate that he was shy and lost limbo on purpose "because i didnt want everyone to see my hands but it no grow back. God made me like this. I dont know why He did but he did"

Nothing like trying not to weep over subway. I told him again that I thought it was so i could find him in his orphanage.

Natalie said...

Can't wait for Hand Camp when Collin is old enought! Thanks for sharing yalls experience

shae said...

Katie b.----sounds like such a moment for will man....thanks for sharing!! So proud of him and I love to envision him as one of the mentors some day!

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