This morning as I lay in my bed with my beautiful Amber, she reminded me that she knows so much, as we laid there, both facing the window, I whispered in her ear that I loved her, she turned around to look at me and gave me a kiss before turning back quietly. Today is a very poignant day today, it is the day that two years ago my beautiful god-daughter (little Cousin) Bethany lost her life to a brain tumour aged 5. The actual day was very much like today in the UK, wet and windy. I had driven to oxford to be with my other family members the night before as we knew that it was time. I remember whole night before, the drive up, the time spent with her in Intensive Care, and the time when we took her to the hospice where we all saw her take her last breath. It plays in my mind like a video-tape, like it was yesterday. You never expect to see a child leave this world, and this is something that I hear so much about due to the world I am in bringing up a child with a profound disability.
Bethany was such as special young lady, I was her first visitor and took her first photo, which still hangs in her mothers house, when she was born and when I left the hospital I went and bought a pregnancy test which confirmed I was pregnant. So not only was it the day Bethany was born but also the day in which I knew I was expecting another special Angel.
I remember visiting her on the day we were told that her tumour was likely to be terminal, I had travelled there with my Mum and Dad as I just had to see her. When we left the next day, Bethany just kept hugging me and kissing me as if it was the last time I would see her. Of course it wasn’t and she fought a brave battle around 18 months in total.
She was always such a caring and thoughtful child. A couple of weeks before she died, she was watching Amber who was sitting on the floor shaking her head rhythmically as she likes to do, at this point Bethany, who didn’t speak a lot around us at that point in her illness, look-up to me and said, “Carol-Anne, why can’t Amber talk”, I said “because she is special Bethany”, she said “but how can she tell you when she wants some sweets?” I replied “I just know, because I know her so well and understand her”, Bethany just looked at me, and said “Oh ok” and carried on eating hers. Bethany loved being around Amber, and I believe she is still around her. This morning when me and my girl laid in my bed, I told her that today was the day that Bethany died, and Amber listened intently, then although she was lying on her side was looking above her as if she was listening to someone. I am sure it was our Angel in Heaven talking to our Angel on Earth.
As I travel this journey with a child with CDKL5, it is like a journey of discovery I am learning so much everyday, being surprised by abilities of our kids on daily basis. As parents we often say that Absent Speech is a feature of the condition, however, its amazing how communication come in so many forms and not just speech. The other night Amber got off the Sofa and walked me back to her bedroom, because she wanted to go back to bed, then two days ago when everyone was enjoying themselves in the hot tub, she walked me outside to be with them. We have to listen, it is not in the traditional sense, its more listening with our eyes, our senses, our hearts. I am "listening" to Amber and understanding her more and more each day, I know she has intellect, courage and compassion for her fellow human I see it and sense it. One day last year, I was frustrated with her when I was trying to feed her, she could tell! Later that day, as I sat with her, I apologised for my frustration and she turned around and grabbed me around the neck and kissed and hugged me as if she was telling me, "Mum its OK, I understand" it was so deliberate and of course had me in tears. She understands emotions so well. I like to think that as she lays awake at night (sleep disorder) that she is being taught by the people we can’t see, or at least I like to think that she isn’t alone in the darkness. I have heard lots of parents of special children say they are sure their child has a special friend that they cannot see as they stare and look intently at something or someone we cannot see.
I would like to dedicate this post to my girls, Angel on Earth, Amber and and Angel in Heaven Bethany. Two days before Bethany died she sat on Simon Cowells lap and sang twinkle twinkle little star, and it then seemed that in a twinkle, she was up there with the stars. Love you my beautiful Angel always.