Should you ever find yourself researching raising children with disabilities, one of the first things you are likely to come across is an article by Emily Perl Kingsley called Welcome to Holland. It’s very well known, widely reproduced and generally accepted as an appropriate analogy for the unexpectedly tangential lives parents with complex children lead.
The article addresses expectations. The ongoing contrasts between the should-have-been and the reality. The never-ending succession of things which have the potential to trigger comparisons and therefore, grief.
These comparisons are more easily drawn when dealing with something where expectations are already running high. Things like Christmas, summer holidays or, as was the case for us this weekend, a family wedding.
I am very close to my siblings, they are incredibly important to me (remember Sibling Revelry). So watching my brother wed the love of his life (and I have lucked out in the sister in law stakes too) was a big, exciting, deal. My brother has a very special relationship with Mojo they have a kind of unspoken bond that has been evident since she was very little. As if that wasn’t enough Mojo and her little sister were to be flower girls, pretty dresses, pretty hair, sparkly shoes the whole lot.
It would be very easy to self-indulgently feel sad about the differences between Mojo’s experience of being a flower girl and those of an average 4 year old girl. Dress shopping involved me wrestling dresses onto her while she tried to eat them or hide behind the netting in the skirts. There was no ‘give-us-a-twirl’ and she had no opinions to share (other than perhaps, which offered the best opportunities for chewing). I flirted with feeling sorry for her (and myself) that day, until she started belly laughing at me trying to get the dress over her non-cooperative elbow. I was making the mistake of presuming that the only way something can be enjoyed is in the traditional, conventional way.
And so it was for Mojo’s whole wedding experience. She travelled to the wedding wrapped head to toe in towels as I was terrified she would be sick on her dress. The beautiful braids which were very carefully put in her hair by the hairdresser lasted approximately ten minutes before she ripped out the bobbles and clips and restored her characteristic bed head look. How she laughed.
We adjusted her dress to fit her Upsee (an amazing harness made by Firefly which allows non-mobile
children to ‘walk’). This meant she could experience walking down the aisle alongside her cousin, rather than in her wheelchair. I’d given this a lot of thought and we’d measured up and dress rehearsed well in advance. We didn’t however, rehearse in the tights she was wearing on the day. So when we came to strap her feet into the foot pads in the church her tiny feet slid clean away from her shoes leaving her floating fairy-like a couple of inches from the floor. When it was clear that the shoes were not for staying put, we dispensed entirely with the footpads. Initially my conventional sensibilities felt a pang that she wasn’t going to be able to ‘walk’ like we had wanted her to. Seeing her float delightedly down the aisle like a particularly giddy fairy holding tight to her cousin’s hand left those thoughts in the dust.
As ever, Mojo ended up doing things in her own unique way with a huge smile on her face.
I got my proud mum moment and my proud sister moment and there were happy tears all round.
It wasn’t just in the Kodak moments that I found peace with the parallel experiences of a non-conventional flower girl it was in the little things, the unplanned, expectation-free moments. Seeing the bride leaving the top table half way through dinner to check in on Mojo who was tucked away enjoying some ipad down time, really moved me.
For a day so filled with unusual activity, new people, loud noises and minimal down-time Mojo naturally had her moments and so subsequently did I!. I can’t pretend it’s always easy to ignore the comparisons but it’s only me who struggles, Mojo is completely unconcerned. That is what I need to remind myself of when things feel a bit ‘Holland’.
At the wedding reception each guest had a card on which to write their words of wisdom for the newlyweds. I was distracted trying to keep Mojo entertained and happy and fed. I’d just spilt an entire bottle of feed on my cream shoes. Unsurprisingly I had a total mind blank. I didn’t have a single word of wisdom to offer. It was only when I had time to reflect on the day and indeed reflect on the five years since I married my own Mr Right that my ‘words of wisdom’ arrived. And so…
Dearest G & D,
Be happy, be truly happy. There are no rules about how life should be enjoyed. No formula for contentment, your happy doesn’t have to look like everyone else’s it just has to make YOU happy.
Be prepared for happiness and joy to come heavily disguised, sometimes convincingly disguised as disaster or heartbreak. Be prepared to look and to find joy in unexpected places. There is beauty in learning to value each individual moment of joy, all the love and all the laughter. Embrace the grey, the difficult days and the challenges, the tears. These things don’t spoil the happily ever after they enrich it, they build you and they reinforce your love.
You have done the difficult part, you have found each other, you looked further than most would ever dream to, you overcame an ocean of obstacles. Your story will be unique and beautiful. If you always look to each other first in all the happiness and in all the sadness there you will find your reason, your purpose, your anchor in the storm.
Be happy, be strong, be together. We love you both.
L, B, M & C