We’ve just had an intense three days. This weekend we are recharging our batteries and mulling over the events of our road trip up north to attend a multi disciplinary meeting with expert professionals in our daughter’s condition. We’ve had so many questions over the years to which we’ve found no answers, and as time has passed emerging health issues have taken us completely by surprise. We had asked to be referred to this rare clinic last year and expected a long wait. In fact we’ve had only a week to prepare. It seems our appointment letter had gone astray and an administrator was charged with chasing our confirmation. Luckily we could drop everything at short notice and make the necessary arrangements to go.

Over the years we have attended literally hundreds of appointments regarding the many facets of our daughter’s health, education and social care needs, but never before have we seen so many professionals together in one place to offer us their wealth of experience and knowledge in our daughter’s condition. History has taught us to manage our expectations as so often we’ve been disappointed. With our daughter’s complex needs there are so many variables and conflicting opinions, and making informed decisions hasn’t always been easy. This time we are keeping any expectations firmly in check.

We have a six hour drive to our carefully chosen accommodation in a well known northern town, a flat near the centre and not far from the local hospital where the meeting is being held. We have a good supply of food, drinks, dvds, medication – usual for us when we venture away from home for any length of time. We have booked a two-night stay so that we can see something of the area while we are there and enjoy the break in a part of the country we don’t know.

True to form we have a bad night and when we arrive at the hospital our girl is not in good shape at all, displaying serious signs of the health problem which has dominated our lives for several years now. The group of medics and therapists are kind and sensitive, give us time and space to tell our story, observe our daughter, ask us questions, talk about the nature of her condition, suggest explanations and offer advice. Their perspective is new and gives us hope. This is amazing. And refreshing. We hold our breath and look at each other. Our daughter watches something on her tablet, laughs, and glances round at us, wanting to share the joke. We are very proud of her for being able to keep so focused and good natured despite feeling rotten.

We leave the appointment with an unexpected optimism. Unfortunately all plans for the rest of our stay have to be shelved and we are confined to barracks as our girl is too poorly to go out. I manage a brief foray out to the supermarket and my partner gets as far as the local chemist. The drive home is uneventful but we are all in good spirits after a reasonable night’s sleep. Our girl is engrossed in her films and we are full of excitement at the thought of the changes we are going to make in the coming weeks and months ahead. As we arrive home a wave of exhaustion overtakes us all. It’s good to be back.

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