A year in the life of a swan

This morning I was re-reading an old blog post by a friend of mine about the passing of time when you have a child who is developmentally delayed. This passage, in particular, caught my eye:

My time may have been speeding quickly, but things for Rufus were and are a little more glacial. Not only is his experience of time far slower and longer than mine, it was becoming apparent that his development was taking a similar attitude. And why for me his second birthday is approaching at break neck speed, and yet I don’t have time to help him catch up. At two, I have to accept that despite the tiny, and may I say monumental, strides in his development for a child that had such a poor outlook, they will not make him a toddler be. He won’t be blowing out candles on his birthday cake, he’ll most likely be attempting to smash it with some toy or other.”

“I don’t have time to help him catch up.”
There are days when I wish I could slow down the passage of time, just for Orange. I’ve spent a good deal of 2012 trying to figure out how to help Orange catch up but as I see him slipping further and further behind what typical nearly-two-year-olds are doing I realise that instead I just need to move into a different realm. I know now that I can help him achieve but I can’t help him catch up.
It has taken Orange the best part of a year to learn how to sit. A year of weekly sessions with his wonderful physio and daily ‘sitting practice’ at home with me. In January, aged ten months, the only way it was possible for Orange to sit was in a Bumbo seat, wedged in with rolls of towelling behind him and all around his wobbly little body. Day by day, he gathered strength. By August he could sit on the floor without support for just long enough for me to be able to take this little snapshot.
It has taken him another four months of hard work and practice, that he has protested about daily, to be able to sit like this, and play, without wobbling over. He isn’t able to transition yet between movements, so he’s either sitting or not and the in-between lacks anything recognisable as grace, meaning it will be a while before he can be left sitting without close supervision, but we are getting there.
All in all, it’s been a year of wedging, holding, propping, distracting with rattling toys and endless verses of ‘The Grand Old Duke of Orange’, kissing bumped heads, cheering, clapping and occasionally crying (him and me). A year. In that time, I know babies that have been born who are now sitting, crawling, chatting, pulling to stand and feeding themselves. And this is how I know I have to move into a different realm, because the comparison with normality has become so distant I can’t even really imagine what normal looks or feels like. If I try and anchor myself in the normal, the everyday achievements of typical children become too painful to watch. First words, first steps, handfuls of biscuit being shovelled in enthusiastically by sweet, soggy little baby fists.
Acknowledging that we are in a completely different, and unknown, place frees up the soul a little, to celebrate life and all its achievements, both big and small, without comparison. I can enjoy Orange’s milestones if and when he reaches them, without dread or fear of their pace, while also still having room in my heart to celebrate all the little firsts of the other children in our lives, of friends and family. In learning to sit, Orange has worked immensely hard and has achieved something that I didn’t really know would be possible for him. Rather than mourn the fact it has taken him a year to achieve, or dwell on how tired I am from trying to help him, I just want to celebrate.
Before having Orange, I was a perfectionist to a fault and so terrified of failure that trying to do something I wasn’t absolutely sure I could achieve was out of the question. As a result, I have missed out on too many of life’s experiences and have wasted unexplored talents and desires through paralysing procrastination. Orange has brought a new perspective. Every day brings with it a complete unknown. This year he has taught me to try. Try, try and try again, even if you’re not sure you can achieve what you’re trying to do. Because you just might. And when you do, it will be totally brilliant.
In typical swan style, we have no idea what 2013 holds for Orange. As he grows and develops, I already have one long-eye on some of the challenges that will lie ahead but for now I want to stay focused on the positive. He is here. He is happy. We got him to Cornwall. Today, that’s what matters.
And just for fun, in case you thought all we’ve done this year is learn to sit ;), here’s a very brief run down of what’s been keeping us so busy in 2012… I haven’t written it all down before and although I need to point out that, for a swan, this is a pretty short list, it goes a very long way to explaining why my paperwork is such a mess and I haven’t ever quite  found the time to file my nails or prepare a healthy meal:

– Ambulance rides x 1
– A&E visits x 2
– Hospital admissions x 2
– Surgery x 1
– Paediatrician’s appointments x 4

– Opthalmic assessments x 2
– Hearing tests x 2

– Neurologist appointments x 3
– Geneticist appointments x 2
– Dietician appointments x 3
– Physio appointments x 27
– Portage play therapy x 5
– Occupational therapy visits x 3
– Speech and language therapy visits x 2
– Hydrotherapy sessions x 2
– Orthotist appointment x 1
– Team Around The Child meeting x 1
– ECG heart scan x 1
– EEG brain wave scan x 1
– Chest x-ray x 1
– Blood tests x 7
– Urine tests x 1
– Saliva sampling x 1 (oh yes, this was the most fun, digging around in a 1 year old’s mouth to send off samples for his DDD study)
– Social care assessment x 1
– Direct Payments assessment x 1
– Specialist health visitor appointments x 3

2012 has also been a year of discovery and forming new friendships. I cannot tell you what a support our new friends at SWAN UK have been. As you can see from the list above, having an undiagnosed child means a lot of therapy, invasive testing, questioning, assessing, occasional surgery and (hopefully not too many) hospital admissions. It can be exhausting, physically, mentally and emotionally to manage it all and not let it take over your entire life or bore everybody silly with medical terminology and test results. Having a group of friends, and I really do feel like I can call them friends now, who are all riding a similar path has changed what has been at times a bewildering and terrifying experience into a manageable one. One we can even make jokes about along the way as our children present us with an ever growing list of mystery. Here’s to a happy and healthy 2013, little swans.
“The swan, like the soul of the poet,
By the dull world is ill understood.”
Heinrich Heine, Early Poems- Evening Songs 
 
 

 

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