It’s one of the things that is said most often to me. By family, by friends, by people we meet out and about and get talking to…
‘I don’t know how you do it’
‘I don’t know how you cope’
Within the community of parents of children with complex needs the answer to the question is usually very simple. You have no choice, you do it, you get out of bed in the morning and you cope and eventually you’re epic hard work becomes routine and therefore looks ‘easy’.
My answer to this is a bit different. While I totally accept that the having no choice aspect is very true (certainly in the beginning), for me a far more significant factor is the team we surround ourselves with. In this instance I don’t mean the professionals, the doctors, the therapists, the teachers, all of whom are without doubt making it possible for us to cope. I’m talking about the ‘normal’ people in our life. The people, in most cases, without any experience of disability to speak of.
We cope because our family embraced Mojo long before she was born. They adore her. They treat her just like the other children in the family. They meet her where she is at, whether that is physically contorting to ensure she is included or simply facilitating family time which is accessible without being contrived. We cope because when we wobble they are there, coping for us, coping with us.
We cope because our friends take Mojo in their stride. I don’t mean that they ‘accept’ her or even that they include her because of course they should. What I mean is that they do so without awkwardness or fear in their eyes. They ask questions unapologetically about how to move her or help her. They talk to her at an age appropriate level and, believe me, even some professionals struggle to do that with Imogen. They don’t bat an eyelid about sitting with her so we can have a break. They unflinchingly pass the sick bucket when she once again throws up her feed (in fairness that wasn’t anything special that particular week but that’s a whole other story!!).
So usually the answer to the friend who asks how we cope is, we cope because of you.