This journey always had three main aims, circumnavigate the island, and write an interactive blog about it and mainly to help and to raise money for charities.
While the achievement of the first two aims are mainly dependent upon us, with the third one we need help.
Joshua is the young boy for whom we are raising money. We have introduced him already in our previous posts and explained what his needs are and what the money are used for.
This time we asked his mum, Tara, to write about her son.
So, please, give us a hand, and as we are nearing the half point of our journey, help us to bring our fundraising target to similar level. Thank you, Natalie and Michal.
by Tara Haroon
When we were told Joshua had PVL (Periventricular leukomalacia) which may lead to cerebral palsy and all of the conditions that go along with that we didn’t realise we were going to become experts in positioning, movement and communication. Over the past two years we have become lay-professional physiotherapists, occupational therapist, neurologists, nurses, visual impairment teachers and speech and language therapists. Of course our expertise lies only with Joshua’s conditions but in Joshua, we are experts.
So when Joshua is sitting in his new dinner chair and we can see his head dropping we are worried about head control and neck muscles shortening or lengthening. When he is in bed and brings his knees under him which causes a twisting in his spine we are worried about scoliosis. When he has a seizure we are worried that his epilepsy will change and become life threatening. There is always something to worry about.
Naturally when Joshua was diagnosed we refused to beleive it. We thought it would be fine, he’ll grow out of it. We remember sitting in the Neo-Natologists office having a discussion about ‘quality of life’. Still disbelieving and not wanting to acknowledge it we renamed the doctor, Dr Evil (his name was Ebel).
Physiotherapy started when Joshua was 6 weeks old. He was tiny, about 6lb and was just a regular baby. A new baby, doing what new babies do. Cry, feed, sleep and cry some more. At first as milestones passed and Joshua wasn’t reaching it we put that down to him being early, we believed that he would catch up.
When we noticed Joshua wasn’t tracking and following with his eyes was when we began to know that something wasn’t right. Our baby couldn’t see. Not with any consistency. He has glimpses, he definately sees better in a darkened room that a bright one.
We are always grateful to the team of therapists who support Joshua. Even when we thought it was unnecessary, we continued with the therapies, just in case. Knowing that extra help can’t hurt any child, we embraced it. Boy did he need it. We are so grateful to his physios who have worked to maintain range of movement and help teach us methods to reduce Joshua’s tone.
We have learned more from Joshua about patience and love. that has definately kept us sane and kept us going, trying to learn as much as we can to give Joshua the best possible chance to learn as much as he can so he can reach his full potential.
People have also been a great source of inspiration and support. We have had friends organising social fund raisers. Friends who donated time and money to help Joshua receive extra therapy from Bobath. And friends who have participated in sponsored events, like swimming, running the marathon, walking and even a mad couple who currently seakyaking around the UK to raise money for Joshua. We have amazing friends who show unwavering support and love for Joshua and give us strength and motivation.
Of course we have learned so much from Joshua’s therapists, but one of the many benefits of Bobath is the intensity of each block. Having physio every day during the week not only gives Joshua a chance to master a skill but it gives us the opportunity to learn how to hold, support and encourage good patterns. We are his daily carers and it is crucial that we understand the benefits and risks of different activities. We impart knowledge to others who support him but we have the skills and knowledge do that.
We are back to the Bobath for a week block next week. I’ll be sure to write up something about his progress.