When I started this blog, I wanted to let people in to our lives to see how “normal” things are for us with Seren, and how much we love and cherish having her as part of our lives. Months down the line I realise that our lives are so very normal that I don’t actually have much to share… we just do normal things, our weeks are full of school runs and groups and trips… I barely have time for a cup of coffee.
But then I was reminded by a friend the other week that everyone’s idea of “normal” is different. Our “normal” embraces the additional needs that Seren has. The appointments at hospital, the development group she attends weekly, the professionals that come to our house… to us, its “normal”, but to a family who have children with no additional needs, this would not be normal. Seren also comes with extra paperwork… a whole load of paperwork – not least the dreaded DLA form which I look forward to filling in again at the beginning of next year as the system will not accept that Seren will not grow out of having Down’s syndrome.
Daily though we just live as a happy family and Seren is a joy. She brings a light in to our house that is unexplainable in its beauty. She fills us with pride and makes us better people. She has made me re-evaluate a lot of my idea on what life means, what its for, why we exist. The fact that she has Down’s syndrome does not define her, she is her own person. I have never been worried for Seren or her future because I have this gut feeling that she is going to be fine. I live in such a wonderful community and have such good friends that I am sure she will be well loved and will enjoy her life here. Seren is just Seren.
We are a family though and we have 2 other children… our lives do not revolve around Down’s syndrome, nor do we revolve around Seren and her needs. We have other stuff going on. We have our bubbly wonderful Ava who has settled in well to school and has just started gymnastics and has an active social life. She is an angel to us. So grown up and responsible. We are so proud of what a lovely little girl she is, empathetic, kind, well mannered and (mostly) very well behaved. She is a firecracker and she keeps us on our toes with her jokes and antics. She is a wonderful big sister and she gives us an easy ride.
Then we have Violet… and we have a whole host of other issues to deal with… My poor baby Violet who has been through so much in the first few months of her life. She had her MRI a few weeks ago and had to have a General Anasthetic to keep her still for the procedure. It wasn’t the most pleasant experience, but something which was unavoidable if we wanted a full diagnosis for her spina bifida. In the weeks following the MRI I had everyone, EVERYONE, tell me that she would be fine. “Ach, she’s so strong, she’ll be fine”… everyone assumed SB would mean that we should be able to see something physical, that she should have weak legs, be limp, be developmentally delayed and to look at, she is none of those things. I even had my GP and Health Visitor say it, so over time I began to think it must be true. I was confident that the MRI would come back clear and that her little dimple was something and nothing. I gave myself no time at all to consider that all the “could be this or could be that” which the consultant had told me about might actually come to something. Imagine my shock when the diagnosis became my worst nightmare… instead of hearing the word “or” in between all the “could be this or that” I should have heard “could be this AND that AND this AND that” because everything I was warned it might be, it was. I sat in front of the consultant in my blissful ignorance and felt like she had punched me in the face. That is one serious life lesson I will be learning – trust myself and don’t listen to what others say… prepare mentally for the worst and if its better than the worst then great. This is usually the tack I take, but for some reason, this time, I let my guard down and now I am paying for it.
Violet will have to have an operation on her spine in the new year and could be left doubly incontinent if it doesn’t go to plan. I can’t bring myself to talk any more about it.
So today I am locking the doors and staying home. I need some time to regroup and work hard on meditating my way out of this hole I have got myself in to. I want to look at my girls gorgeous faces and be thankful for what I have, 3 beautiful little girls who make me happy every single day. I love my husband and I have wonderful, wonderful friends who are amazingly supportive.
Bear with me; when my head is well and truly buried back in the sand I will emerge as my usual positive happy self again. In the meantime I will be feeling sorry for my little baby and myself while I locate my shovel.