1,000 or so days ago Lynn and I were awaiting the arrival of child number 2. Child number 1, Rory, was approaching 3 years old, potty trained and relatively self sufficient. Number 2 was part of a wider plan for a potential child number 3 before I would then hang up the boots, so to speak. Life was a breeze. Rightly or wrongly, everything changed for us on the 10th of April 2013.
If you think of your life as a motorway, driving foot to the floor, hammering along in one direction, the night that Eilidh was born we definitely took an unexpected slip road (it was a B road apparently). We took it at 80mph, and it was a right angle turn. We rolled the car into a field and didn’t wake up properly for months, maybe years.
Lynn and I had laughed in the run up as the baby was due on our wedding anniversary, the 11th. What a nightmare it would be if our anniversary always got trumped by a kids birthday party. Instead this particular anniversary was destroyed as we sat distraught, minds racing as to the new future that we now had to come to terms with.
Some parents talk about mourning the loss of the life they were expecting to have and that what you go through is effectively a form of grieving. It’s perversely comforting to know that there is an ‘explanation’ for how you are feeling and I read a lot about it to convince myself that everything was going to be ok. This is the classic grief cycle (Kubler-Ross’s cycle apparently)…
Denial – It was a few days until we got the ‘official’ test results confirming Eilidh had an extra chromosome. It was obvious, but I still refused to accept it. My google search history at that time would make for interesting reading… ‘mis-diagnosis of Down’s Syndrome’, ‘how common is mosaic Down’s Syndrome’, ‘pictures of people with DS’, ‘Liverpool FC squad news’ (some things are always important).
Anger – A friend of mine who had suffered immense tragedy in her life advised me to buy a punch bag and hit it until I cried. I didn’t need to do this, but I totally got the sentiment.
Depression – There was a long feeling of helplessness and I can’t fully remember how we got through. There are things I remember like the first friend we saw the morning after – she just grabbed Eilidh from us like she was the most beautiful and perfect thing in the world, the saviour who brought us the home made shepherds pie for our anniversary dinner, the boss I phoned from the hospital because I didn’t have my own mum to turn to, the friend who travelled the country to take me for a pint, or the friend who was totally chilled with it all when I couldn’t speak for crying down the phone at him.
Dialogue and Bargaining – Maybe this is where I am now. Sharing my story and talking about things that I previously couldn’t or wouldn’t.
Acceptance – Moving on. We’re doing this in segments. Some things happen that make us sad again and I drop back in the cycle, but the more that we practice the easier it is becoming. Eilidh needs us to do this, if we, her parents, can’t accept her then she’s in a spot of bother.
Looking back I’m not proud of how I reacted – I had a beautiful new daughter but I couldn’t see that, and my concerns were all self-indulgent – but I do now acknowledge that it is impossible to react rationally in situations as irregular as that. What chance have you got when even your medical expert refers to your daughter as ‘nobody’s plan A’?
I didn’t know what I was getting into, and that made the journey twice as hard. I had no knowledge of disability or mental health challenges. I had no understanding of the challenges faced by people who are different, or the challenges their families and loved ones deal with as a result.
There is a lot to be celebrated about the growing tolerance and inclusion for peoples differences in our society, but at the same time there are things that as a parent of a child with a disability shock and upset me. I believe that a lot has to do with education and awareness. Being different is not a bad thing, you can be different and be happy and lead a great life. Maybe if we had a little bit more insight to these lives then we might be more considered in our views…..
…..So, to 21 Blogs….. I’ve asked some people to write a few words on ‘being different’ so that for the next 21 days social media will be alive with conversation about this subject (or as alive as I can make it with the 200 or so connections I have!). Hopefully a few people will engage in the conversation and we will come out the other end more aware, a bit more educated and hopefully way more compassionate.
This is blog 1 of 21 Blogs. Please read them and comment on them. Start a discussion. Please share them and encourage your friends to tell 2 friends, and then they can tell their friends, and so on, and so on, and so on… you know how these things go.
Read. Engage. Find your plan A.
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