This week we have removed the stair-gates from two doorways and passed them on to a good home. A home that needs them. Those stair-gates that were so necessary for our first born child in order to contain her and her growing curiosity as she developed mentally and physically before our eyes.
They stayed in place when her sister came along two years later but now, as Lou Lou approaches the age of 4 and can only sit unaided for a matter of seconds, they’re just getting in the way.
This got me thinking about her ‘delay’ and what it means in practice.
We’ve all been there. Bags packed, nervous excitement, waiting for the plane and watching the departures board. Anxious to know which gate etc but then the dreaded word ‘delayed’.
Next thing you know, you’re dozing on uncomfortable chairs or spending the last of your euros in duty free, playing the umpteenth game of backgammon or turning the pages of your last holiday read. You’re stranded, time stands still and you just can’t wait to get moving again and be on your way to where you need to be.
Our daughter was delayed on the outbound journey, not the return. A ten night hospital stay at ten weeks of age with infantile spasms and a catalogue of seizure types (I’m not sure how many of the 40+ kinds she exhibited) and we narrowly avoided intensive care.
From then on we were prepared for some delay. How could she develop normally when the clusters of spasms kept on coming? Then we achieved control of seizures thanks to an increase in medication and progress was made. She engaged in play and in us, smiling and giggling. Those were good days.
But her card was marked.
An assessment was made at the child development centre and a team put in place with an OT, SALT and Physio. Plans were made and early intervention sounded impressive. But then new seizure types appeared and built up into almost constant clusters of focal seizures.
We were suddenly back in the departure lounge and our plane was grounded.
Clinic appointments, letters, EEGs, MRI scans, global development delay changed from significant to severe to profound and multiple learning difficulties.
More milestones missed and, in this last year, talk has turned from plateau to regression.
I abandoned the traditional mother and baby groups early on as they became too painful to attend. Yet now the special needs groups that replaced them for us and were our safe haven, have new members whose children (while also delayed) are quickly surpassing mine.
Lou Lou started nursery in a special school last year so at least that’s offering us a place where she can just be and at her own pace.
It’s hard. I won’t try and hide it; it hurts and it’s hard. But our Lou Lou can only follow her own path. And we don’t know where it’s leading. But we’ll lead her down that path as far as we can and for as long as it takes and we’ll never leave her side.