Right now I'm sat in a hotel room metres from Birmingham Children's hospital. I was sat in this same room last year for Immi's video telemetry. This year we are a bit further down the brain surgery pathway; today she had a joint OT/physio/S&L assessment where they put her through her paces and tomorrow she has a MEG scan to place her language acquisition and processing areas in her brain - important so they know whether they can operate without her losing her language.
She did really well and answered everything the speech and language therapist asked (with a bit of help from her Ritalin and bribery of a Christmas present from the hospital dept!) The therapist wisely decided Immi had had enough and so we will go back tomorrow after the scan if able. She wouldn't have got much more out of her anyway as 5 minutes later as we walked the couple of hundred metres to the hotel, she had a seizure. It is quite interesting how much more help you get offered when having a seizure right outside a hospital compared to anywhere else!!
While sat here this evening I have been flicking through Facebook (as you do!) and clicked to see 'my album of Life' (see pic below). I nearly shared it, but something stopped me. As I sat and mulled over what it was that had stopped me I realised a few things:
1. Firstly I realised that Jed was missing from the photos. Now, Jed is a big part of our lives. We love him dearly. He is an amazing son and we are very proud of him. But he does have things to deal with that many of his peers don't. He has to deal with the fact that life pretty much revolves around his sister. That she demands attention. That his whole world was turned upside down when she was diagnosed; he moved home, country, friendships, school, language. He has learned to be very independent very quickly (probably too quickly) and is pretty mature for his age. We try to spend quality time with him, but after the daily routine of life with Imogen plus work, there isn't a whole lot left as these photos testify to. Family activities are few and far between now. I know once teenage years are hit it is often hard to get the family together anyway, but I always thought we would be going walking or riding together by now, but those kind of activities just cannot happen. So we either split up or they just done happen. Family time now is mainly film night on Saturday evening which, thanks to autism, has become something very hard to shift. So. Just for the record I LOVE YOU JED! Xx
2. Secondly, I realise life has not turned out how I wanted or expected. I thought we would be in Kyrgyzstan long term. I thought we would be having family adventures together. I thought we would be active. I never expected the majority of my 'life album' to be photos taken at home. Anyone who knows me will testify to the fact that I am really not a home bird...more a migratory one. But I have kind of had my wings clipped! I feel a bit like an Arctic Tern living the life of a quail! I'm still not quite sure how to act. One of the things I realise is that living this life I feel much more isolated. It is much more of a struggle to reach out to people. My life is smaller. Getting out at the weekend when you live with someone whose sole aim in life is to have consistent pyjama days is hard work! And when we are out my life is full of snatched conversation and chasing after Immi; constantly on high alert for danger or seizure. Either that, or hosting deep, UN-like negotiations about how long we have to stay out before she can have her iPad back! I'm sure I look either like a meercat on steroids or an overworked exhausted donkey when we are out, so mainly we don't go out. If we do it is planned like an army manoeuvre or I am alone! So if you are in the Penzance area please do drop in!
3. Finally, I choose to be thankful. I am thankful for family, for friends, for a great team I work with at school, for a home, for great (and supportive) schooling for bother kids, for the NHS (though I sooo wish it was better funded) we have had, and continue to have the most amazing treatment and care - the NHS is truly amazing. For Immi - she has taught me so much. I fear for her future. For what happens later when she has left school, and then when we are old, but also when I see the atrocities overseas at the moment I realise that if our country's infrastructure fell it would have an immediate and huge impact on her life. I'm thankful for her open and loving spirit. Her ability to make people smile with a word. She is so generous with her words and wherever we go, we normally leave someone smiling - although I admit there are the other times too! I'm thankful for Murray- the ultimate tag team. They say that families who have children with special needs have the highest divorce rate. I'm not surprised; the strain put on the family and emotional and physical energy needed to look after what is in effect a toddler FOREVER is huge. I have the utmost respect and awe for single parents, I don't know how they do it. But I am very thankful for our tag team. When one of us is about to lose the plot the other one can step up and it is so necessary. And I am thankful for God. It is God that has taught me that our worth is not based on what we do but on who we are. In the world's economy, unless you have academic ability or monetary value you have little worth (the recent debates on screening out unborn babies with Downs Syndrome pay testimony to this), but I believe the Kingdom of God has a different value system where we are valued and have worth because we are made in the image of God. Yes, it is sometimes a broken image because we live in a broken world, but our worth is not in what we do or produce, but in who we are. The world at the moment offers little hope in the face of brokenness, the kingdom of God offers hope and future. Jesus offers beauty for ashes, gladness for despair and freedom for captives....that's the kind of future I'm after!
