Well….first of all, it has been quite a while since I posted. This year has been incredibly busy….Ben has been playing ‘catch up’ all year with school, appointments, and life in general. I also have been playing ‘catch up’ work wise….I started working part-time at the kids’ school in September, which quickly became full time. Because I only started off the year part-time, I decided to continue teaching night school and doing my best to maintain the books etc. for our company, so needless to say, it has been a busy year for all of us!
Anyways, back to wishes and dreams. This year we were told that we have an opportunity to have a ‘wish’ through Rainbow Society – an Alberta children’s foundation granting children with complex needs an opportunity to make a ‘wish’. We were given a list of guidelines and were told to think of at least three wishes that somehow reflected who Benjamin was as a person. What an amazing thing to be able to do! At the time, Benjamin was sporting his new neck brace, and we were going for adjustments at least once a month. Every time we did an adjustment, he was in a significant amount of pain for about three days or so. On top of this, we were doing private physio two times a week to see if we couldn’t increase his range of motion in his neck a bit. This was also painful for him, but (as usual) he did it without complaint. He did however begin to ask for Tylenol quite regularly, which was our only indication that he was in pain. Anyways, throughout all these appointments, before and after) we would talk and wish, wish and talk. Doctors, physios, orthotists…whoever….would chime in with ideas. What a delightful distraction to discomfort! Finally….we were ready! Ben had his list and he was ready to go. We set up our appointment with Rainbow Society….and off we went! We had decided early on that Ben was running the show for his wish…so I promised to shut up during the interview and just let him do most of the talking (yes…it was difficult).
Ben met with the people and talked…and talked….and talked….his final ‘wish’ list was four items. The board would meet within the next month or so and designate one of those wishes to him.
His wish list was:
- ride in an army tank – Ben’s favourite anything is to play army, so that was a natural fit for his wish.
- vacation to Disney World (there was a vacation selection on the guidelines pamphlet – Ben was eligible to stay at a ‘wish’ village based on previous life threatening events and complicated future procedures.
- a pet dog – our family dog died while Ben was in Montreal – Ben loves animals, so this was also a good representation of who he is!
- see how movies were made (Ben has been a HUGE movie buff since he was one year old….the only time he ever fussed was when we went past the theater and didn’t stop in – this kid is going to be the next Spielberg).
As a parent, it was difficult not to manipulate him because I worried that he would later regret his wish in some way. sidenote: any child receiving a “wish” from any organization – Make a Wish, Rainbow, etc. – only receives one in their lifetime. We felt good that his overall list really showed who he was and what he was like. Anyways, as I said Ben talked and talked during the interview. And most of what he talked about was having a pet dog. (I’m not going to lie….I totally didn’t see this coming!)
My supportive conversation with Jesse after the interview: “Crap….I think we are getting the dog”. (sidenote: Rainbow asked us if we were willing to have a dog, which we said yes to).
Anyways, the more I thought about it, the more I thought….well….maybe a dog is the best wish for him….we know he will have more surgeries and procedures until he becomes an adult…maybe having a dog will be a perfect distraction….we could call him Wishes. So….the month went on and we waited to hear about our wish. I received a call from our contact at Rainbow saying that the board had decided on our wish…would I like to know….or should we wait for our letter in the mail. I said I would wait, so we could all hear it together!
And there it was – a letter to both kids (Hannah was thrilled)!
You are going to Disneyworld!!!
The kids were/are beyond excited. So as we work our way through our home summer school (with all of Ben’s missed school, we really struggle to keep up with our peers) every second conversation we have revolves around our trip. We need to finish reading Harry Potter! We should watch Pirates of the Caribbean again! Where is the Indiana Jones movie? How tall are you? How tall are you in those shoes? You need to eat more vegetables! Is there a place there where you can buy giant turkey drumsticks and eat them while you walk around (Jesse)? Can we have ice cream for breakfast there?
We just had our final meeting with Rainbow Society…and I have to tell you…I am a hot mess! They gave Ben a beautifully packed little suitcase filled with toys and things he might need for the trip. They also gave us a gorgeous hand-made quilt from a stranger – one we will treasure…they took care of everything (EVERYTHING) for us…itineraries, insurance, tickets, absolutely everything. We just have to show up. I was overcome by emotion in the office (and I suspect this won’t be the only time during the trip that this will happen). When Ben was born, I braced and prepared myself for a myriad of awful things that could happen, but nothing prepared me for the kindness shown by strangers/organizations that has become a beautiful woven part of our lives.
And yes….we are considering getting a dog….