Being the non stop chatter box that I am, I am rarely lost for words. Since having Isabella and finding (or not finding out as the case may be) about her condition I find my myself constantly in situations where people we meet on hearing about her condition are lost for words.
It is a natural thing for strangers when they see a baby or toddler smiling away to make conversation with them or the parents. I found myself in one of these typical situations a few months ago. I was waiting for a table in Frankie and Benny’s. Those of you who know me well, know that I love my food and love Frankie and Benny’s. Maybe a bit of shameless name dropping will get me some discount (just kidding!) The lady waiting in the queue behind me asked how old Isabella was, I told her she was nearly two. She pointed excitedly at her daughter and said. ‘Oh the same as my little girl, I bet now that she is running around she is keeping you on your toes!’ Bam there it was, the moment when I could feel the situation becoming slightly awkward. ‘Well she keeps me on my toes but she is not walking yet, she has special needs, you see.’ Before I could continue Bam, Bam conversation over. With her eyes averting my gaze the floor beneath her suddenly looked very exciting. I could see her willing them to hurry up and get a table for her and her daughter. I tried to continue but to no avail. No eye contact, no interest. So I had no time for her.
So my best friend and I stood there with Isabella, now also wishing they would hurry up. When we finally got seated I asked my friend if I was wrong. Should I have just smiled and made nice and said yes? No, certainly not. My friend agreed with me. If I had have just said yes she would have thought I was embarrassed about Isabella’s disability when she caught sight of me feeding her, carrying her to the toilet or holding her balloon she was given. I shouldn’t have to hide Isabella’s disability to make people feel more comfortable. Throughout the meal I could see this lady looking at me. Watching me feeding Isabella, staring when she was shouting excitedly (something Isabella does frequently) watching the way Isabella is fascinated by her baby wipes. Did no-one ever tell her it’s rude to stare.
If you ask a complete stranger a question you can never predict the reply. I learnt this the hard way. Years ago when I was a Holiday Rep I asked one of the hotel receptionists when she was due. She told me about 20 years ago. Simply put, Awkward.com./Flooropenupandswallowme. Hence now I say nothing in case I make another massive oversight.
People being lost for words and becoming awkward isn’t always the case mind. Sometimes when people hear about her condition they ask questions and seem genuinely interested. If you have questions I will happily answer them; Will she ever walk? We don’t know. Will she ever talk? We don’t know, but we can hope and give her all the tools and support she needs to reach her potential – whatever that may be.
On the other hand I have met people who have surprised me by the obvious frank disbelief in their voice. Just last week when I told someone all of Isabella’s tests have back normal, it was followed up with a ‘Really?’ and a screwed up face full of disbelief. It seems to be hard for some people to understand that Isabella cannot be placed in a box with a label. That she has had several tests that have come back normal and that Doctors don’t know why she is the way she is. Doctors have actually referred to Isabella as a puzzle. They have called her unique. She is severely delayed and disabled. She is undiagnosed. Put simply she is a SWAN. Our beautiful SWAN.
I recently messaged some friends on Facebook that I don’t see often or in some cases not at all. I asked them for their support in spreading awareness for SWANS and gave them the link to this blog, if they had the time to read it. Several people messaged me back and were certainly not lost for words. They sent me wonderful messages, giving their support and asking me the ways in which they could help raise more awareness. Sadly there were some people who didn’t message me back, they said nothing. You see while the internet is great for sharing thoughts and ideas like here in a blog, it can also be bad, as the words are on-screen and without a voice things can be taken the wrong way. similarly the people who didn’t message me back could have had legitimate reasons or they didn’t know what to say and chose to say nothing at all, but no reply leaves me wondering why? Why didn’t they say anything?
I will happily talk to people all day long about Isabella (in-between groups, swimming, dog walks, home visits and hospital appointments! ) If you have questions I will happily answer them, although my answers might be vague and short, as we don’t have many answers ourselves. Without a diagnosis we don’t know what to expect or what the future holds, as we have nothing to compare it to. That doesn’t mean I won’t answer your questions. I would rather you asked why then say nothing at all and stare at us, pointing and talking with your friends.
So maybe this blog and the people who have read it and the people who follow it will gain some insight and understanding into what it is like having a child with an undiagnosed medical condition. What it is like to have a SWAN. They can then pass what they have learnt on to friends and family. Then maybe if we are really lucky the term SWAN in the future will become more widely known and understood and parents can simply say when asked, my child is SWAN….