Updated: May 8
Today a special little boy should have turned 5, Joshua should have been waking up today another year older, I’d have been thinking about how time passes so quickly and have been wishing for it to pause. Instead, Joshua’s birthday is spent in a state of confusion. How can it be true that instead of having a party, we visit his memorial tree, it’s our reality.
Joshua entered this world peacefully, just as he exited. Naturally, I taunt myself with ‘what ifs?’ What if he had have remained healthy, who would he have been? Would he have been placid or characterful? Would he have started to play rugby and enjoyed superhero programmes? Had he have survived his extensive brain damage, what would our life have been like? I feel that this is a question which a can relate to more.
Everything I do now, I view with a different mindset, I view it as the mother of a severely disabled child. One who instinctively looks for a kind smile, an inclusive offer, a lifechanging support and one who sadly sees the many limitations that would have become huge barriers for our family. Joshua would now be a wheelchair user, he would no longer fit on a baby changing table and without a Changing Places facility I would now be forced to change his nappy on a toilet floor, having to lift him in/out of his chair manually. We’d have been unable to leave our house without careful planning, for fear of not being able to toilet our child with dignity.
I see myself performing medical procedures with noisy equipment attracting unwanted attention in public, whether this be tending to his feeding tube, giving him suction, etc. I see the stares as I do so, of people wondering ‘What’s WRONG with him?’
I see the steps/stairs with no option of a lift/ramp, wondering how on earth we’re going to get into a venue. Once inside, with manual lifting, I see that there is no equipment for my child to access. He requires specialist seating and specialist play equipment.
I see us invited to parties, playcentres and parks, only for Joshua to be unable to actually play due to the lack of inclusive equipment, because let’s face it every park has the ‘tick in the box’ inclusive swing… Which in reality means that I would have had to have manually lifted Joshua out of his wheelchair, weaving around his multiple tubes to sit him in the swing without any supportive seating, to then transfer him back with back breaking effect… But I’d have done it for Joshua, whilst questioning, why, if this was the only one piece of inclusive equipment on the park, was it not actually accessible, surely we deserved a wheelchair swing…But of course, that would be too expensive, so it’s easier to ‘tick the box’ and put in an ‘inclusive’ piece of equipment that doesn’t actually work!
I see us selecting a school for Joshua and having to learn to put my trust in those who would care for him, a mammoth step for any parent, but especially for a Special Needs parent, our children require expert medical care, advanced communicators and those who are willing to truly learn to understand and meet our child's specific needs.
I see us juggling hospital stays and hospice stays, we’d have probably had to have come to terms with the fact that we needed a personal carer to help us to support Joshua’s needs. We’d have had to have let somebody in to our home, had them in our lives day and night in order to allow us to try to find some respite. Not because we wanted to, but because we would have had to have realised that we are not superhuman! Perhaps, to allow us to give some focus time to Joshua’s siblings, perhaps simply to permit us to give ourselves some well deserved time. I would not just be Mum, I would be a carer, a nurse, a social worker at the very centre of my child’s ‘case’ managing the professionals and services involved with my child’s care, (23 at last count). I would be Joshua’s voice, his advocate, his everything, he would have relied on me, our family.
I see us never travelling lightly or spontaneously. Everything would have to be pre-planned to ensure that medicines and medical equipment were packed.
I see us struggling to park when we get to our destination because people have used the designated disabled bays without permits.
I see our calendar full of appointments, to which I would have needed time of work in order to take Joshua to. I see that being a problem for some employers.
I see me having heated discussions with professionals/services who are not hearing what I say, who are not valuing the fact that I am the expert when it comes to my child.
I see us unable to mix within our own community, not through any other reason other than the fact that it doesn’t have the inclusive provision to have met Joshua’s needs.
I see all of these barriers and more, and I’d have fought like hell to overcome them, like many of our families do. I know I’d have paraded Joshua as best as I could within our community and further afield, for the world to see. He may have had Profound and Multiple Learning Disabilities (PMLD) but that did not make his life any less valuable, it did not make his ‘voice/view’ any less important, it did not mean that he couldn’t communicate, it simply meant that we had to understand his alternate method of communication and help others to too!
Today, our brave boy turned five, we only managed to celebrate his first birthday with him present. This year we reflect and celebrate the fact that because of Joshua many of the above barriers will be removed for those in Rochdale who have a disabled child, the Jolly Josh centre will be fully accessible and inclusive, with ceiling track hoists and a Changing Place facility. It is with gratitude and love that we thank everyone who has supported our journey of love and grief and who work so hard to enhance the lives of families like ours.
Happy 5th Birthday Joshua James, grief remains intense, it has not eased, but only because our love for you is strong and always will be.
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