I have indicated in previous posts that things have been getting tough with J1 in ways other than his physical disabilities. I do not mean for J1, but for me.
J1 is developing a fantastic sense of real awareness which is wonderful in so many ways. The downside to this is that he is also developing the understanding of frustration. The understanding of things he can not do, that other children around him can. Things he would like to do but physically is unable to achieve.
For me, this lead to trying to explain why he can not do things as easily as others may be able too. To trying to remind him with gusto of all the things he can do. To desperately try and think of things that we can do, altogether, so that he doesn't have to worry about not being able to join in with his brother or friends.
To J1, I have been a cheerleader of positivity and 'can do'. In private I have cried, felt frustrated myself and very low. It kick started that anger only induced by the feeling of extreme unfairness. The feeling of looking for someone to take responsibility for what happened to J1, only to find that is as productive as trying to climb a mountain made of fine ash.
I went along to my doctor, having seen the signs of a slippery slope approaching, who referred me to a good counsellor. From this some of the negativity has subsided. This teamed with the sheer inspiration and opinion defying wonder that was the London 2012 Paralympic Games has propelled my energy back into being more proactive.
We thought about what we could do, as a family that would be amazing. Something mammoth that would stay with the boys forever. I knew what I wanted to do. Have wanted to do for sometime. Something that would be a big undertaking, requiring a lot of research, a lot of phone calls, a lot working with other people to make it happen. A lot of saving.
We wanted Florida. We wanted Disney, Universal, Seaworld, Water parks. We wanted the holiday of a lifetime. So we decided it is time to make it happen.
After weeks of browsing hotels, for those with suitable rooms, amenities, environments we narrowed it down. After numerous phone calls to the airlines 'special assistance' hotline regarding specialist flight seats, hold capacity (as J1's chair does not collapse), and what we could do with regard to changing J1's pad on the flight - we decided on a date to go. After contacting many transport companies to find one with a wheelchair adapted vehicle that could also seat five additional passengers, plus luggage we decided on where we wanted our transfer too.
We built our dream holiday.
We are making it happen.
We are going to take that leap of faith and hope that the people on the other end of the telephone are correct in what they are saying and that in reality we do not find ourselves facing a whole heap of challenges. The biggest predicament so far has been the flight seat. The childs flight seat would be ideal for J1, but already at 8 years old he is too big for it. So we are having to rely on the different adult version. I hope that the transport company have fully understood that J1 has to go in the car, in the wheelchair and the wheelchair must be fixed as a seat itself. I hope that the hotel have reserved the 'accessible' room and do not just allocate it 'if it is available' when we arrive as we have read about in some cases before. We can only hope that we were firm and clear enough in our phone calls. We can only hope, because if we did anymore than that we would never have made the decision to actually do it.
So, with sheer excitement welling in our belly, we are going to a place where J1 can get on the rides (well, most suitable ones of course - I don't think The Hulk will be sporting a wheelchair carriage but who cares we'll be in the marvel, magical land of Florida!). We are going to a place where, for the boys, the characters they watch on TV will be real life. We are going to a place where we know we will only need shorts and t.shirts and suncream.
For three weeks we will take a step outside of the reality of life and build memories to stay with us all forever. Roll on 2013 - watch out Orlando and Clearwater Beach we are on our way.