I wish you knew how my son’s short-break care makes the most enormous difference - both for him and us, as parents.
Henry, 13, has a very rare genetic condition that was only diagnosed when he was eight. Among many complications, it means he has severe epilepsy and profound learning difficulties. He has life-threatening seizures and we live with the reality that one of them him could kill him any time. It’s terrifying and caring for our son is a 24-7 operation. We have to take turns sleeping in his bedroom because we need to listen out for the start of a seizure.
Despite these massive challenges, he’s a happy, cheerful boy who loves spending time at The Treehouse. He makes the most joyful, excited noise each time our car turns into the driveway. When we leave him, we know he’s having lots of fun and there are wonderful people looking after him. His breaks make the world of difference to myself and my husband, Nathan.
It’s only when he’s at The Treehouse that we can genuinely switch off, confident in the knowledge he’s OK. For that particular day or evening, we know he’s in the best and safest hands, being cared for by kind, compassionate and very professional people. It gives us freedom and, for once, we don’t have to worry. We have an opportunity to spend quality time together as a couple, or perhaps retreat to the coast and clear our heads during a long dog walk.
We have friends in other parts of the country and their local children’s hospice doesn’t provide the same level of care. In that respect, we know how fortunate we are and I simply can’t imagine life without EACH. Those breaks give us the headspace we desperately need and we always feel better, happier, refreshed and recharged afterwards. It’s great for us, and also for Henry, because we know he’s in his ‘happy place’. It’s a change of scenery for us all and works on both levels. Then when we go to collect him, we’re always pleased to be reunited and feel ready and equipped to go back to our life together.
EACH has also been an incredible source of support in terms of the counselling we’ve received. It’s enabled Nathan and I to communicate and support each other better and have a stronger relationship. We might not have had the skills to deal with our situation otherwise. Counselling has taught us to reframe our lives by focusing on the positives, rather than dwelling on the way things have turned out, in a way we never imagined. It’s helped us find joy in what we have and we’re eternally grateful for that.
Caroline Sheppard, Henry’s mum