At the beginning

It’s impossible for me to start at the beginning because my wonderful, complicated, enigmatic little boy is 3 in July – a lifetime away from when he was born.  At that time things were so very different to the way we are now – I look back and see a different family.  So – with apologies to those who have seen this before – here’s one I prepared earlier which gives you a little history, a little background and, frankly, the reason why I feel strong enough to put this blog together now…

It’s fair to say that within weeks of Small being born I knew something wasn’t quite right.  I think perhaps if he’d been my first I could have stayed in denial a bit longer but having had Big (his elder sister), and seeing how she had developed, it was quite clear that things weren’t happening as they should.  He wasn’t holding his head up, he was floppy, he was only interested in shadows, not people’s faces.  And so began endless time-consuming, life-altering rounds of appointments, checks, invasive blood tests and MRI’s all to work out what was wrong with our beautiful little boy.  Noone could tell us.

It’s hard to describe the devastation you feel when you realise that the child you imagined and the life you had playing out in your head is so utterly far from the truth.  You fear for your child – will they live? What kind of life will it be? You guiltily fear for yourself – how is this going to change my life?  Will I cope? You fear for your marriage – this isn’t what we’d pictured, are we strong enough to survive this? And you fear for your other children – how will they react?  How will their friends react to their sibling? How are you going to have time for them?  And all this whilst trying to remember to iron school uniform and keep enough milk in the fridge.

We know that children are all different, even within the bounds of the same diagnosis but having no diagnosis…. Never mind no pathway, no track, there’s not even a first direction to start walking in.  Almost every syndrome has a support group(s) available, they have awareness weeks, they have a wealth of readily available information for health professionals and there are established routes for accessing therapy, funding, equipment…. No diagnosis?   Sorry, you’re just not ticking any of my boxes.

Then, one day, a chance conversation at Great Ormond Street – do you happen to know of a support group, we just can’t be the only ones?  They wrote and suggested SWAN (Syndromes Without a Name).  And I was finally able to breathe out.  My boy is not an undiagnosed anomaly – he is a Swan!  And we are one of hundreds, thousands…

I always think of this quote from the end of one of my daughter’s earliest books, ‘Elmer’s friends’.  ‘Elmer’s friends are all different, but they all love Elmer’.  All our Swans are different, but we all love SWAN.  Because unlike the other support groups where they have one common binding medical issue (e.g. epilepsy, autism or tube-feeding) our commonality comes from no commonality – we all have no diagnosis, and so we all fit Swan.

For the first time I was able to see, realise and accept that Small being the way he is is not my fault.  It wasn’t the soft cheese I ate, the stress I felt at work, the fall I had at 35 weeks because I got up too quickly to rescue my daughter from that day’s impending doom, it just Happened.  And until you reach that position – of wondering every day if I Did This – I don’t know if you can imagine the relief you feel when you understand No, it’s not you.  It just Is.  This huge weight is removed from your shoulders.  And I was able to move on with life again. This is Huge.  Without connecting with Swan, this wouldn’t have happened.

It is National Undiagnosed Children’s Awareness Day on Saturday April 13th.  Finally, Small, and all the other Smalls have a day to call their own.


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