It's a cruel disease. Now we are about 3.5 years post diagnosis. What has changed?
I accept it all. The disability part, the death part. All of it. Connie says she's accepted the death part but she can still be floored by glimpses of how her disease will affect her future. We're working through it and she has a lot of specialist support. Her main response is denial but denial doesn't work forever as reality will always creep in.
Physically, she has declined a great deal. She can walk only with someone taking her arm and a lot of her weight and it's very slow. Mostly, she uses a wheelchair. She's still in mainstream school. We chose a wheelchair friendly school.
Her heart is stable, her scoliosis is severe, her speech has worsened and her sight and hearing have been adversely affected. She has all of this to deal with as well as just being fourteen.
Socially it's isolating. Her difficulties make her uncool. To avoid being hurt by people she's decided not to make new friends. She has only one friend at school and it breaks my heart. This is the hardest part of the disease for me. Watching the way it chips away at self esteem until it's gone.
But it is the new normal for us. A phrase which I'm sure you all understand and are familiar with. Life goes on. We have ups and downs. It's not always easy and I know the future is bleak but we try not to look too far ahead and we try to get a lot out of life and the time we have.
In 2018, Connie spent 10 days in Florida with an amazing charity called Dreamflight. She went to all the parks, swam with Dolphins and was treated like a visiting dignitary. I defy you to watch this film without sobbing...
That was a life changing moment for Connie. Whereas before Dreamflight she struggled to say anything good about herself, afterwards she acknowledged she was brave.Without hesitation. And she made a great friend in her roommate Mollie. They are still in touch.
Last summer saw us build a ground floor extension for Constance because reaching her upstairs bedroom and bathroom was not going to be a long term possibility. We had help from a DFG grant, another discretionary payment on top, help from our families and a charity. We built a huge side extension (wheelchair users need a lot of space) with a separate entrance, carers room/sitting room, a large wheelchair friendly bathroom and a large bedroom overlooking the garden.
I knew I wanted Connies bedroom to be bright, light and bringing the garden in. My inspiration pictures were;
So that was the plan. And that's what we built.
Connie is a bit of a Goth...
And her hearts desire was this photograph...
So plans changed. And not having so much as looked at a paintbrush for a few years, I embraced the challenge and got to work....
So Connie has taught me, DIY is not all about adding value to one's house. It's not about adding kerb appeal and maximising potential. It can be all of those things of course, but now, for us , it's about having the bedroom of your dreams because sometimes, life is short. Creating a magical space is where it's at for us.
The bedroom, or Goth Towers as we call it, is not finished. There's still furniture to paint and far too much white in there. We don't always see eye to eye, Connie and I. She reigns me in from full on Disney Haunted Mansion. She explains that Old House is ok, Haunted House is not. I have been put in my place. But so far, I think we have fullfilled the brief which was ''I'd like a bedroom that no other teenage girl has.''
We've enjoyed it.
So much so that I'm thinking of hand painting emerald green Chinoiserie walls in my bedroom. Why not? You can see where this is heading. We are going to be one of those houses that goes viral if we ever put it on the market!
But I don't care. We all deserve a fantasy room.
With the help of our families and one very kind stranger, we were lent a flat just minutes away from The London Eye for the New Years Fireworks at the beginning of 2020. Connie always said she'd like to go but there's no way she would cope with the cold as she cannot control her temperature due to her hear disease. Luckily Mollie from Dreamflight was able to join us so we made dreams come true for them both. Our windows looked out onto the Thames and the London Eye so we spent a relaxed evening in a restaurant before the fireworks. No need to claim our spot in the cold.
It was incredible.
Little did any of us know then what 2020 held in store. We've been shielding Connie for five months now. Jason's work has all but dried up. I nearly lost a dear friend. She survived Covid but will never be the same.
I hope you and yours are safe and well.
Until next time, dear reader, stay safe.