Saturday, August 30, 2014

And then summer was over! (beware:random stories ahead)

WOW!!  Hard to believe yet another summer has gone by and Cam has started 6th grade.  Where does time go?  Why do the times you want to last go by so fast...........I feel like just last week we were starting our summer leaving for Tennessee.  

Where do I start, so much to say and yet I've struggled finding the inspiration to write..........

Do you ever meet someone and just know that they were put into your life for a reason????  Well, I will start there because this happened to us this summer.  Kevin and Cam were going downtown for what was to be a regular MDA event, taping a segment for the telethon, and spending the afternoon with our favorite MDA staffers and families.  Little did we know there would be someone there that fell into our family and Cam stole their hearts the instant they met!  There is an amazing fighter named Eric that is fighting his own devastating battle with ALS diagnosed at a very young age.  While he struggles with his own medical needs and challenges with his ever changing body as his disease progresses, he reaches out a hand to Cam and our family and offers to help in anyway possible.  We began a series of emails with him, and then his brother and then his sister and we must've sent 100 emails back and forth within a matter of days.  It was like we had known this family for years, yet some of them we had never met in person before, and I had never even met still gives me goosebumps when I think about how I felt about these people from the first message.  All of this was building up to Eric's 2nd annual barn dance benefit that we were invited to, and of course would be attending.  What we soon found out was that they wanted Cam to be a guest of honor and wanted to surprise him with something.  Unbelievable, fighting for you own life and still giving to others, I'm not even sure there are words you could use to describe what big hearts this man and his family have.  So the night rolls around and we finally get to put a face to a name and it was like meeting a long lost family member every time we were introduced to someone.  All I could think was "where have these people been my whole life?!"  We had a great evening and enjoyed meeting all of Eric's friends and family.  The night did not go without tears,  but I am not sure whether I shed more tears of happiness or sadness.....still a toss up!  Thank you Eric for being an inspiration not only to Cam, but anyone fighting a battle.  You are living proof that a disease does not have to drag you down....wake up and FIGHT LIKE A CHAMPION everyday! 

To learn more about Eric visit


     Another gift was brought to Cam this year, seems to be a theme that I am falling in love with :), he was given an opportunity to learn to scuba dive through a program at RIC called caring for kids.  For the last 5 month he has spent his Sundays in a pool training to become certified and successfully became a D3 diver.  He worked so hard and we couldn't be more proud.  He was granted a trip with the program as well as divers from DJ's Scuba to the Florida Keys to dive for 3 days in the ocean!!!  Kevin and Cam set off for the airport on August 20th along with 16 other people, including 4 kids with disabilities, dive instructors and RIC staff.  They stayed in a beautiful rental house right on the beach and Cam saw the ocean for the very first time with Dad and Victoria by his side.  You see, Victoria wasn't going to go but Cam decided at the last minute that "she might not be OK being away from him for 5 days" so, she flew to Florida with them.  The next day they set out for Cameron's first dive experience in open water!  After a small bout of sea sickness in the water he went with his scubility instructor R (we will refer to this amazing woman as R for privacy) and Dad in tow.  Cam completed to good dives the first day and progressed from there.  He was so excited about everything he saw and how amazing it was to be "free"  Can you imagine what that must feel like for him?  Being completely weightless, going wherever he wants to go without feeling like his legs won't take him there,  cruising the sea floor with someone watching you who has dedicated hours and hours to making sure his experience was the best it could be, fitting him with multiple wet suits, masks and regs to be sure they fit the best they could, a group of people who want nothing more than for you to come up with a smile.  I'm telling you we have been so incredibly blessed, the people that we have had the pleasure of getting to know in the past few months has been so overwhelming it makes me cry just trying to write about it.  Cam and R would descend facing each other, she would help him clear his ears, he would give to OK sign and they would continue.  She held him against currents and pointed out every cool thing there was to see under that ocean.  R you are an incredible woman, Cam does not trust many people, he is tough to crack, but you got him......although I wasn't there first hand to see it, I could hear it in his voice each day that I talked to him and that every picture speaks volumes for the experience he had.  And to all of you that dedicated your time to teach these kids and take them on this incredible journey....THANK YOU!  It is an experience none of us will forget, especially Cam.  I just hope you are all prepared to take him diving in the future because he hasn't stopped talking about what he wants to do for his "next trip"


      Onto Victoria, she hascontinued to impact our lives in incredible ways!  She brings joy to all of us each day with her crazy antics, cute face and unconditional love for Cam.  She still loves to work any chance you give her and is so proud of everything she does.  She is getting back into the habit of school, getting Cam's shoes, walking him to the bus and being depressed all day until he comes home!  I know I've said that I knew she would help Cam physically and was amazed at the emotional transformation Cam has made since getting her, what I didn't know is how she would impact me (kind of indirectly).  When we went to get Victoria we spent 2 weeks with families, some of which faced the same struggles we do and some who had struggles in different ways.  Even though conversation amongst Kevin, Cam and I and the others were limited, I came out of it with a couple of incredible connections to people that I would have never had an opportunity to meet.  It wasn't until after we left that I realized I really failed to take advantage of this.  I was in a place where I could have someone to call or email that would TOTALLY get what I was feeling, or give advice because they had already been through that and vise versa.  Thankfully there is this amazing thing called social media and I could reach out and see about making these connections now that I realized my fatal mistake!  Luckily, it worked!  Through CCI I have people that completely get what I mean when I refer to a certain frustration or emotion relating to Cam.  I also can lend an ear when they need it.  One connection I made is to a mom who never ceases to amaze me with her positivity, compassion and love for all children.  She has adopted more than one special needs child and would give anything to make sure they are happy and are surrounded by family and friends who love them unconditionally and she inspires me to be a better person everyday.  Another connection is someone who I feel like I could see or talk to once in a blue moon and we could pick up where we left off, I hope I never have to test that because I enjoy our frequent messages back and forth, but she has this strength about her that I'm not even sure she knows she has.  She has experienced things that no parent should, yet you would never know...she is always smiling and her daughter is a ray of sunshine.  I hope these connections continue and that they get as much out of our conversations as I do.  My only wish is that we all lived a little closer :(  Guess that's a good excuse for a ladies trip........

     Cameron's health has been good over the summer.  He wanted to go back to RIC for day rehab over the summer months so we got him back into that.  He was going 2 days a week, much to his disappointment, he wanted to go 3 days.  LOL  Now that school has started he will continue to go 1 day a week for 3 hours as well has pool for an hour each week.  Cam loves to work, he looks forward to therapy each week and can't wait to tell me about what they worked on!  As far as progress, he is maintaining, but not making much headway in the walking department.  I think the surgery was good for his contractures, but unfortunately Cameron's ultimate goal was to walk again and I'm just not sure at this point that it is in the cards for him, he never gives up though so I have to give him lots of credit.  (He is very stubborn and I'm not sure where that comes from;) )  We have seen most of his dr's for the usual gamut of 6 month follow ups and most so far are status quo with the exception of the Orthopaedic Spine doctor.  Unfortunately Cameron's scoliosis has become significantly worse in the last year.  He talked through some options with Cam, one of them being surgery, and we will re check in 6 months before making any decisions.  If the scoliosis continues at the current rate it may be time to intervene, but fingers crossed it stays right where it is.  He has been off of his G-tube for about 6 months, but looks like that too will be coming to an end.  He is not gaining weight at the rate they would like and just seems to be getting taller and taller.  We meet with his dietician in about 2 weeks and I am pretty sure she will deliver the devastating blow that he has to go back on nighttime supplements.  UGH........he has been doing such a great job with eating and trying new things, I sure hope  this doesn't send us back down the anti-food road!  I have been trying to ease him into the idea by talking about it a here and there, today I cleaned his room and plugged his pump back in by his bed in hopes maybe we can EASE into this........for anyone that knows Cam, you know I'm just teasing myself, there will be no easing......bedtime tonight should be interesting :)

I guess I will leave it at that for now, lots of random thoughts but it's so hard to catch up when it's been so long!  Guess that means I should write more often.............

Just remember wake up everyday and SMILE :)!!!!!


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!!


Saturday, February 8, 2014

Experience of a lifetime

There are not enough words to describe the emotions racing through my body.  They warned us in our binder we were required to read before we arrived that this would be an emotional experience and boy, they weren't joking!  On numerous occasions throughout the day I have held back tears of joy, been so proud of Cam, felt so bad for those that were trying so hard to no avail, felt frustration in myself when I wasn't getting a command right (thus confusing the dog), happy to be a part of this experience.......I could go on and on, but I will save you the long, long list of my feelings.  Overall as we were driving back after class and our first field trip we all agreed that this is the best experience of our lives to this point.  I expected it to be fun and exciting, like getting a new puppy, but in reality it is so much more.  I guess I could relate it to the feeling that someone experiences when going to meet a newly adopted child.  All of this anticipation of what will it be like, what will the dog be like, will she fit in with us, how will my routine change.......comes to a head when you are paired with this amazing "working" animal that will forever be a part of your life and continue to forever change the life of your child.  We have a lot of learning to do and by no stretch of the imagination are we using Victoria to her full potential, but just in  learning the basics we have all been tremendously moved by this experience and can see a change in Cameron's behavior, outlook and view on his ability to do things.  He remains very focused in class with clear goals in his mind, and anyone that knows Cam like we do, knows that nothing will stop him from getting what he wants out of this incredible opportunity.  He has bonded with Victoria in a way that I cannot even put into words, when you see him with her you will understand.  His smile is different, he is expressing his feelings differently, he looks to her and her to him like they were meant to be together and know what the other needs in that moment.  Last night was the first night I can remember that Cam never once wanted to be on his computer or put his headphones on.  He sat with us and joined in the conversation all night long, never more than 6" from Victoria.  He even expressed feelings that I'm not sure have ever come out of his mouth before.......As we were watching the Olympics he very openly said "I mean I like watching the Olympics because they're cool, but I don't because it's all stuff that I can never do."  Kevin and I sat silently looking at each other, unsure of whether to cry from sadness because it was heartbreaking to hear or cry from joy that he expressed it so bluntly or cry from pride that this experience has made him comfortable enough to just put it out there without a second thought.  Even almost 24 hours later I'm still not sure what to do........I guess all of the above seems appropriate.
Day one- all of the dogs waiting to be matched with their kids 

   Cam and Victoria right after we found out she was ours. It was love at first sight for them. 

Our first night at the hotel with Victoria. They were inseparable. 

During class we sit through lectures and demonstrations on taking care of the dog, what's OK and what's not, new commands, daily routines and a lot of information.  Following the lectures we are given time to practice as a group and individually.  For the most part Cam and Victoria nail it every time!  Today we took our first field trip to Meijer and they did great.  We walked through the entire store and she never lost focus on her job and responded instantly to Cam's every command.  Next week we move into advanced learning where we take the basic commands  and expand on them to work in our world.  Today we worked on get and give for retrieving items and next week we will take the basic command and use it for things that Cam will use such as getting his pencil off the floor if he drops it, getting his xbox controller from the couch (the important things) :)

As much as I'm looking forward to a day off, I am more excited to get back to class Monday morning!!  

Tomorrow we have the day off and will spend the day relaxing with Victoria and maybe venturing out to the mall and dinner.   We will keep you all up to date through pictures on facebook and can't wait for everyone to meet her.

Our new family :) 

Wednesday, January 29, 2014

Another leg comes to an end

As I sit here at the Starbucks enjoying what has become my normal Monday/Wednesday routine, I am filled with mixed emotion.  Today will be my final day of this, Cameron will be graduating from day rehabilitation this Friday and moving to an outpatient facility where he will be getting only PT twice a week for an hour.  This transition was supposed to happen 2 weeks ago and Cameron asked if he could continue at day rehab for 2 more weeks until he left to get his dog.  He truly enjoys his therapy and loves everyone that he works with at the RIC facility.  Every Monday/Wednesday/Friday he wakes up ready to go work for 3 hours and loves every minute of it!  He works harder than anyone I know and always does it with a smile on his face.  While he is sad to see it end and nervous about the transition, I am overwhelmed with emotions..........sad, happy, relieved, excited, nervous, ugh, you name it, I'm feeling it!  

I look back at the last 4 months, and first of all I can't believe we've been doing this for that long, and I think WOW!  We made it!  Another mountain adventure endeavored, another flag at the peak yet so many more left in my backpack to place.  We have made it through one of the toughest years yet and I'm sure it may not be the hardest one we will ever face, but boy it sure gave us a run for our money!  Yet through all of this we have experienced so many heart warming moments.  It is so easy to look back and reflect on the struggles we had and how hard things were, it seems so hard to find the positives, but they do exist.  Through everything we have learned that no matter what the news says about people, there are a lot of amazing people left in this world with huge hearts, people that even if they don't know you they are willing to extend a hand to help, or offer words of encouragement just when you need them. I look back at those moments and they continue to bring tears to my eyes, keep in mind I am sitting at Starbucks right now looking like a fool typing and crying :).
We realized that we have an amazing group of people that are supporting us no matter what and are willing to help in any way we need it.  I still remember the day we were sitting at the hospital unsure of how to get Cam home because insurance wouldn't pay for transport and the overwhelming response we received from people offering their services and time to help us.  Unbelievable!  Followed by this gift box we received that was put together by Cameron's best friend and his family.  They gathered things from all of these people, most of which we don't know, and that night was one for the history books!  Things had been worse than ever before and as we all sat in bed opening gift after gift, card after card filled with words of encouragement, our hearts were warmed and we were once again assured that we would get through this.  I remember falling asleep that night next to Cam feeling so at peace, something I hadn't felt in awhile.  From there we were inundated with cards, emails, visitors at the house and the hospital and each one of these left a mark on our hearts that we will be forever grateful for.  These are the moments that helped us get to where we are the peak ready for the next adventure!  

So onto the next adventure.  About a week before Christmas Kevin and I received the best phone call ever, Cam was matched with a service dog and we would be headed to Ohio I February!  We have been waiting for this moment for over 3 years. We decided to not tell anyone, including Cam and let him open the announcement letter on Christmas.  That moment was unbelievable. In 10 years I have never seen Cam cry from excitement before, and I mean cry, he couldn't even read the first line to let everyone else in the room know what it was.  He immediately teared up as soon as he saw the logo on the letterhead!  ( once again crying at Starbucks thinking about it). I have video and wish I could have held on to video tape a little longer, but I couldn't keep it together.  What a way to start 2014!!!!  So as we finish day rehab this week, we head to Ohio next week to begin an adventure that will be a huge part of Cam's life for years to come. We have a lot to learn and from what we understand the training is pretty intense, but we are ready.  

At the same time, we were approached by a group of friends that said they wanted to put on a benefit for Cam and us.  Wow, again what a heart warming experience to see a group of people dedicating their time, energy and resources to help us!  These people that have chose to be on the committee have jumped in head first and have been truly amazing, and were just getting started.  The benefit details are coming together nicely and a date and venue will be confirmed by the end of this week so we will keep you all posted.  

Through all of this I feel like my marriage to Kevin grows stronger.  It always amazes me that we can carry each other through each adventure and continue to strengthen our bond.  We seem to know exactly when the other person needs strength, compassion, encouragement or just a swift kick in the ass!  On a very rare occasion we are both sliding off the cliff and that's when we rely on the people around us.  Eventually one of us grabs a hold of the edge and lifts the other back up.  It's funny how people always question our marriage when things are bad, I think there is such a stigma about marital struggles when things are tough, but for Kevin and I we have some how managed to make ours work I thins crazy life we lead.  

Thanks again to all of you for your support, it truly is what keeps us forging ahead.  The words of love, support and encouragement are the foundation of our positive attitude and ability to keep going no matter what.