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 Eric……it 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 http://www.fightlikeachampion.org/
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 smile…….in 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 :)!!!!!