Joy, regardless.

IMG_4714.JPGTomorrow I will watch my boy turn 3. His birthday has caught me off guard as we have been so overwhelmingly consumed as a family these last few weeks by moving house that I’ve had no real time to process it and get ready for it. Until now. I am about to have a 3 year old. I stood and thought for a few minutes today about how I feel about this and then how I imagine I should be feeling about this as a parent of a disabled child. A disabled child who is so far from where your average 3 year old is in terms of development. A child who, on his recent early years development profile, was averaging a generous 10 months. Should I be grieving? Should I be thinking about the ‘what ifs’, the ‘what could have beens’? Pondering about which 3 year old appropriate presents he might be getting tomorrow if he didn’t have Angelman Syndrome? Mulling over the fact that he would probably be singing and clapping along to his own Happy Birthday song, blowing out his candles by himself, riding a new bike or scooter tomorrow afternoon, having a party with friends whose names he could actually say… and the list goes on. I thought about all these things for a brief moment, checked myself and then stopped. 

I am not in the business of comparing. 

I am not in the business of wishing and longing for something different.

I am done with that.

Tomorrow is Rufus’s day. It’s not my day to stand back, watching him whilst yearning for an alternative tale to tell. 

I do not have permission to do that tomorrow. 

Tomorrow, good health permitting, will be a day of joy. I often use the word ‘joy’ to describe Rufus because happiness just doesn’t seem to cut it. There are grades of happiness. ‘I’m happy with how that wallpapering turned out’ is different from ‘I just feel so happy right now’. Joy though, joy is different. Joy pierces through every layer of feeling ‘meh’. Joy is a thing that wells up from a deeper place regardless of whatever else is going on outside your own body and I think Rufus, most of the time, nails the epitome of joy. You can see it welling up in him if you hang around with him long enough. It comes from somewhere most of us have to tap pretty darn deep into on an average day and it’s the same place he stores his giggles, where his pining for intense cuddles live and where the words that don’t have sounds are kept.   

Rufus will be showered with cuddles, kisses, cards and presents tomorrow. He’ll eat cake and have candles blown out for him. We’ll sing Happy Birthday to him (quietly, mind you, because for some reason, that moment at parties when the lights go out and the cake comes out fills him with fear and he erupts into a bag of silent tears). We’ll take him somewhere fun and have balloons. He’ll have all the usual birthday stuff. He will be his own little 3 year old tomorrow, my 3 year old who I am fiercely proud of.

And if I catch myself going into comparing, wishing, longing, yearning, pondering mode, I will remember that Rufus The Joy Bringer doesn’t care a jot what any other 3 year old would be doing on their birthday. He is not in the business of comparing, therefore, neither am I.

Bring it on. 

P.S. Yes, he is getting a helium cylinder for his birthday. Why not? It’s the gift that keeps on giving.

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