I am going to start this blog with an apology - haven't had the chance or motivation to sit down and write, even the idea of talking about life felt like my ideal of hell.
Word of warning, never ever sit and think that your life can't get any worse because trust me, it can. I don't feel ready to go into too much detail as yet but don't worry you'll get to know eventually.
Instead I am going to finally catch up on what I was supposed to be blogging about a month ago; The Amy and Friends Conference.
As a family from the 20th October to the 23rd October we spent time with families with children who also have Cockayne Syndrome. It is like we wait for it all year and then within moments it has been and gone. It is like a dream. Surrounded by people who are struggling on with the same journey that we are and volunteers who have fallen in love with the children and just want to be there to help.
Terri gets herself very excited for the retreat - we make the mistake of telling her months in advance and then she will not shut up about it. In years gone by Terri has astounded doctors and professionals with how, rather than deteriorating she seemed to be improving - she could walk, talk, eat unaided. But as we've all seen over the past year she has deteriorated at a speed faster than her usual. She no longer walks, unless aided, is near enough completely blind and her energy levels are low.
This year was hard, it went from me having to follow her for three days straight to her taking naps through the day and clinging on to us. Since deteriorating she relies on us to be her eyes, ears and comfort - she used to hate being picked up and cuddled. People used to beg her at the retreat for a cuddle, but Miss Independent would never give one up. This year she just hopped from person to person, cuddling. As much as it was lovely for those people, it was hard to watch her decline.
The retreat provides activities for the children and adults, doctors meetings/seminars and advice from charities/companies that can provide help to the children. It ticks every box. Don't get me wrong, attending the retreat is mentally, physically and emotionally draining - but we need it. You spend the rest of the year in your CS bubble, keeping it all in, getting on with normal life and then the retreat comes, and you just let go. Families attend with their children and those who have lost their child/sibling often also attend; I don't know if I will be strong enough to do that, but then again, you are in a place with children who give the best cuddles and surrounded by people who have known and love your child/sibling.
The friends I have made through Amy and Friends are friends I will have forever. I am closer to them than some people I have known my whole life. Even though I only see them once a year.
Maybe, you are sitting reading this unsure whether to attend the conference? Do it, you may not feel ready, but I don't think you ever will be.
It is scary.
It is draining.
But, it is worth it.
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