Monday, June 16, 2014

Clearing the air.....

     Ok, normally I post only about Cam and our family but this time I think I may speak for others in the disabled community because I can't imagine we are the only people that experience this.  I just have decided after years of questioning, wondering and sitting back waiting and watching that I should clear this up.  Whether or not it has any impact, I don't know.  I would hope that somewhere it causes someone to pause and think twice before excluding someone based on what they think is better for that person.  

     So every year Cam goes to school and talks about how many friends he has, he has great birthday parties with lots of friends, we had an amazing amount of support for the benefit,  we've had great turnouts at BBQ's at our house, yet our mailbox and phones seem to only work outbound?????  Nothing ever comes calls for play dates, no mail for birthday invites, no pool party invitations, no summer BBQ's, no beach days with friends, no multi-family weekend trips.  It seems as though year after year as Cam gets older and his ability to participate like every other child his age diminishes, the invites get less and less.  At first, Kevin and I questioned ourselves.  Maybe it was us, maybe the parents didn't like hanging out with us?  Maybe we misunderstood the relationship with parents from school?  Then we would see everyone again at a function and they would all talk about getting together and how much fun they had, yet nothing?  So I started reevaluating the situation and came to this conclusion:

     I think people in general are nervous/afraid to invite someone with a disability to a function for fear they might offend them because it's something they can't do or participate in, or they are worried they won't be able to accommodate them.  Well, I'm hear to tell you it is quite the opposite!  Trust me when I say that person and/or their family will let you know if they cannot attend because it's just not something they are comfortable with or can do, but would much rather have had the opportunity to decline themselves rather than have someone make that decision for them.  When you have a disability so many things are out of your control and so many decisions are made for you everyday, being a friend and participating in activities shouldn't be a decision made by others.  I will tell you 9 times out of 10 Cam would rather be invited and go knowing he can only participate somewhat than to never be invited at all.  I don't think it used to be so hard to hide it from Cam, but as he gets older and social media becomes more popular it seems to stare him in the face everyday. 

     As parents it's always hard to watch your kids grow and friendships form, friendships fade, feelings get hurt, the normal kid stuff.  But it's 10 times harder knowing they weren't invited just because someone assumed they couldn't do it or that it would be too hard for them. 

     Trust when I say this isn't a woe is me, feel sorry for myself moment.  This is a statement that I think many of us feel, but don't know how to express for fear of offending someone, or worse yet, worrying that the next invite is out of pity!  I don't ever want someone to feel sorry for Cam, or us, or feel obligated to include him.  I just don't want him, or any other child with a disability, to be excluded based on thinking that it's just too hard for them or they can't do it.   

     All we ever want for our children is to for them to be treated just like everyone else......... And if you don't know, just ask and we will probably tell you more than you want to know :)

Tuesday, June 10, 2014

Living the dream

Do you ever have those days where you feel like you're just "living the dream"?

     Really though, what is "living the dream"??????  I think the definition for this is different for everyone, for me it's now.  2014 has started out pretty darn good if you ask me, way better than 2013 that's for sure.  Let's see.....

     January just kind of rolled along in anticipation of getting Cam's dog.  As well as a group of friends had decided this was the year we could not say NO to a benefit for Cam, so let the planning begin.

     Then came February, off to Ohio to get Cam's service dog.  Let's just say we knew she would have an impact on Cam's life, we just had NO idea that the impact would be this great!!!!

     Cameron has always been a happy, optimistic, roll with it kind of kid but now, OH MAN, he is a totally different person.  Having Victoria has given Cam confidence like no other.  He has signed up for a scuba program through RIC, is going to to RIC summer camp and has shown interest in joining a wheelchair basketball team......WHAT??????  Just last year he wouldn't even go watch a wheelchair basketball game to see what it was like, let alone wanting to join the team!!!  His grades in school have been fantastic considering all of his therapies have him out of school over 50% of the time.  I think the greatest part for me is that he hasn't used his G-tube since the first night Victoria spent the night with us in the hotel at training.........He has been eating and maintaining weight ever since they met.  I can't believe that a year ago our story was so drastically different.
One of the first nights together at the hotel.

Right after the match was made, love at first sight!

Finally home and inseparable

     March came around, Cam celebrated another birthday, turning 11, with lots of friends and a joint party with his best friend Dec.  Kids came from his new school as well as his old and had a great time.  It's amazing to me the bond that this particular group of friends have formed at such a young age.  There is a group of them that remind me of me and my best friend, they could go months without seeing or talking to each other and catch up where they left off the moment they connect.  Relationships like this last a lifetime and are the most important things in the world.  I often think people get so caught up in how much "time" they spend and not the quality of it.  I think a true friendship can go days, months, even years without connecting and pick up right where it left off.

     Onto April, benefit plans are well under way and the support is unbelievable.  Kevin and I are so humbled by the amount of support being shown by our family, friends and community.  The day of the even arrives and WOW, it goes on without a hitch.  The committee did an amazing job planning organizing and executing what will go down as one of the highlights of our lives!  The venue was incredible, the gift baskets were over the top and the amount of people that showed up was amazing.  We loved seeing everyone and so did Cam.  A few highlights from the day......
        1. The first PT that asked us at 18months if anyone had ever mentioned MD to us was there (let's just say that conversation was very surreal)
        2. All of the main PT's and OT's who have had such an impact on Cam over the last 7 months were there!
        3.  We had family in from out of town showing their support!
        4.  I was approached by a young boy who handed me a bag of change that said " Mrs. Schwartzberg, I have been making and selling loom bracelets to help Cam, this is for him."  He proceeded to hand me a bag of dollars bills and change as I welled up with tears. (for the millionth time that day)
      5.  Cam was given a stack of cards from his friends at St. Damian because they had made him their VILP (very important Lent person)  Let me just say, reading these cards made me have faith that the next generation is AMAZING!
 The day was something that will forever remain in our hearts and minds and truly one of the best.  Thank you all from the bottom of our hearts.
The Crew for Cameron's Crew-sade!

Throughout the benefit process one of the things we really wanted was an accessible vehicle so Cam could drive his chair in and out and we wouldn't have to continue to lift him and his chair everyday.  Although Cam still only weighs 43lbs, his chair was up to 75lbs with his emotion wheels and was beginning to take a toll on my body.  Out of the blue we get a phone call from someone that says they need to talk to Kevin calls, hears them out and then calls me to call back and make sure he heard them right.  It couldn't be.......... we had just decided 3 weeks prior to this phone call that we would get a new van and have a rear lift put in and continue to lift Cam, but his chair could go on the lift.  This was  a much more affordable option, but this phone call changed everything!  This person recently lost someone to ALS, a disease in the same family as Cameron's, and they have a van they no longer need that they wanted Cam to have.  Life changing....those are the only words that describe owning this van!   The people that made this possible are the kind of people that restore your faith in humanity.  They have a beautiful, polite, loving, happy family that genuinely cares for each other and other people.  They would do anything for anyone if they thought it would help them.  Even through their own struggles they always search for ways to lift someone else up......That my friends is the meaning of "life"

Onto May, school is wrapping up, summer is on the horizon and we cannot wait!!  My sister and I took Cam and my niece on vacation to TN and had a blast!  I found a place that could accommodate Cameron so he could zip line through the Smoky Mountains, we tubed down a river, rode an alpine coaster, danced at the Wild Horse Saloon and saw the Dixie Stampede......all in 3 days!!!!  It was amazing.  Now school is out and we are getting our camping trips together, looking for places to kayak and waiting for the days we get to spend on the beach in Michigan.

My sister, the kids and the guides who made this possible.

That smile says it all! (from both of them)

      Sometimes in life you think why me, why was I chosen to take this path.  Is there a reason?  Is there purpose?  Does God really have a divine plan for each of us, and if so, why is this mine?  What did I do to deserve this path?  Yet you push through so that at times like this you can enjoy every moment to the fullest and smile bigger than you've ever smiled.  And enjoy each moment like it's the best you've ever had.  And appreciate every person who has touched your life along this crazy journey, even if that the moment you meet you have no idea what their purpose day you will and in that moment you will smile :)  Our support system is what makes us keep going and for that we owe all of you a "Thank you"  and hope that tomorrow you wake up grateful you were given another day, know that you have changed our lives, (along with many others, I assure you) and SMILE because what do you have to lose!!