Just over two weeks ago I had the pleasure of presenting at CHAS’s transition event about my life, my journey through education and how supported I’ve felt from the CHAS transition team with moving into adult services. CHAS (Children’s Hospice Across Scotland) is a brilliant charity that for over 20 years has been supporting babies, children and young adults with life-limiting conditions. They provide palliative care, family respite and ongoing support through homecare services, hospital presence and within their two hospices Rachel House and Robin House.
From the age of 13 until I was around 19 years old I attended Rachel House. When most people first hear the word hospice they have the image of somewhere very clinical and quite sad, however that could not be further from the truth. I’m not going to lie, I was one of those people, I was apprehensive about first visiting. Although as soon as I drove through the front door I knew it was someplace I wanted to go, and I felt more than welcome, it soon became my home away from home. I would visit 4 to 5 times a year and loved every minute of it. I got to go to T in the Park for the first time as well as daily outings like bowling, cinema, shopping, local carnivals and more importantly had freedom I didn’t have at home. I was able to stay up as late as I wanted to, and then lie in bed in the morning, as well as have the full support I needed. Families are also able to stay, but for me it was my time to have my own independence as well as to allow my parents to have a break themselves. I was able to have my friends stay with me, which I only done twice as I had made friends at Rachel House and sometimes it was just nice to go on my own and chill out.
When my friend did come though it was great because it was like having a very long sleepover. When I was younger I was able to sleepover at my friend’s house, I was very lucky as both my best friend’s mums are nurses, so they knew how my machines worked, but my parents still had to come to help me to bed. At Rachel House though as I said I had all the support I needed and the freedom, so we were able to stay up all night watching movies and have fun. We baked, went out on trips, had takeaways, had food fights and just had a laugh. Whenever you wander around Rachel House all you hear is laughter, the staff are amazing and no matter what the children or their families are going through everyone always has a smile on their face. Being here is about making memories and cherishing those memories. Unfortunately, some friends that I have made at Rachel House have passed away and it’s sad, but I am happy that I got to meet them and we all got share some great times.
Now that I am 23 years old it is time for me to move on from CHAS and the transition team have been helping me plan out what’s next. There’s still a long way to go to reach the goals that I made when I first started with the transition team, but I feel that being involved with CHAS gave me the opportunities to get there. It’s great there is childrens hospices out there like Rachel House to support children and young adults with life-shortening health issues and their families, however much more is needed when you come to the age to move into adult services.