Article by Ashley Lawmon, Duchenne Mum
If you’re anything like me this word fills you with dread and fear. I put that conversation off for years! The picture I had in my head was SO different from what it is. Obviously, there is a very serious and sad side to going or needing a hospice which will never be take for granted or ignored because the heartbreak some families there are going through is unbelievable. BUT there is a totally different side as well. We now call it Rainbows Retreat in our house to take away that fear. It is a beautiful place where the staff are incredible.
Understanding every need
So much family fun and understanding of every need of the whole family, when we stayed, we laughed and played as a family. All care is given from the nursing staff to give parents a total break so they can just be a parent not a carer if you want it that way. If not, you are still able to carry out the care needed. There was a therapist for the family offering free massages, a flat for everyone to stay in and a perfect room for Dylan to stay in downstairs where the nurses looked after him all night, giving us the chance of some well needed sleep.
The happiness these places give to a family in such a sad and awful situation is amazing, people told me I would soon forget why we were there and its true, they have such bright and happy side to them. They are a great team to have on side when it comes to getting the things your child needs and deserves, they can support you with applications and situations where you may need to fight for things. They have emotional support in place for siblings and offer sibling fun days, which help siblings mix with other children in similar situations
Having a blast
My main advice would be if you are worried about this transition please ring and speak to the ‘retreat’ and ask if you can visit I promise it will change your mind. I was terrified even as I walked through the door I could easily have turned around and left. BUT both me and Dylan are pleased I didn’t as he has a blast while he’s there.
About the author
Ashley lives in the East Midlands with her three children. Ashley started writing blogs for Action Duchenne to help her navigate life during the global pandemic.
Read her articles here;
Ashley and Dylan attend Rainbows Hospice in Nottingham.
If you have a story you would like to share with us, please email info@actionduchenne.org.
Limitations…
