I recently read an article entitled "Special Needs Conversation Killers".
The piece was about how to engage in an average conversation with other parents without over-sharing or being too blunt.
I tend to do both; I overshare and I am blunt, which I mainly do on purpose.
When they ask if I have any more children, they tend to add, "Ohh a teenager, it's all ahead of me, bet he is a great help to you"
I don't say: "Actually, he is dying of an incurable condition called Hunter Syndrome, so no, no he is not much help to me with his two younger brothers."
Instead, I smile and nod and I change the subject.
I don't want strangers to pity me, because that is exactly what I will see in their eyes; and Christ, I hate that look.
I do admit that I am blunt on purpose - I am.
When I met that mother, you all know her, the one who always has it worse than the mother sitting beside her, who hasn't slept in weeks because her baby is teething so badly.
She is that mother who will add "Oh you think that is bad, when my 'Sally' was teething, it was a solid six months before we got any sleep, I even had to go to the doctor to beg for help"
That is when I am blunt; I will add, "Wow, I wish that's why I wasn't sleeping, six months isn't that bad. I have not slept since my eldest was diagnosed with a life-limiting condition"
That line right there kills that conversation and hopefully makes that mother rethink her perspective on sleepless nights.
Other times I have forgotten myself and made a passing comment which has killed a conversation in a second.
I've told tales of Ethan, then when asked his age, the conversation dies because nobody wants to ask the follow up question, "what's wrong with him?" or "isn't he a bit old to be doing that still?"
When I talk about my boys with other mammies (who I don't know well) I do downplay what I tell them, how much of it is the truth and how much I think they can handle.
It is just too much to land on someone's lap after they have asked you a 'simple' question.
Ethan has taught me so very much; perspective is one of his main teachings!
I try to imagine how I would react or feel, if I asked a woman (who I see sometimes in the park) how her daughter was doing and she answered with "She's not well, she has cancer and her chances of living are slim."
I would want the ground to swallow me whole, I'd spend my day riddled with guilt and I would never speak to that mother again because I would have convinced myself she hated me for asking such a question.
I want friends, I need friends, I certainly don't want to scare them away or make them feel bad for how I respond, so yes, I do filter an awful lot of what I say before I say it.
1. They'll ask more questions about Ethan once they've found out he attends a special needs school.
Let me be crystal clear here; I don't lie about Ethan, I just don't tell them the worst things.
I am proud of my son and all he has taught me.
If they ask me a straight question, I will answer it just as honestly as I can (without getting upset, it is never easy to say the words 'terminal' or 'life limiting' when you're talking about your child).
2. They will keep meeting me and asking little bits here and there, so I can drip feed them the reality I live in.
3. They will tell me "Wow, I had no idea you were dealing with all this. How can I help?"
4. If they say that line, they are 'keepers'.
Let it rip...I tell them everything, I let them 'into my circle' because you will be surprised how small your circle becomes once you've a dying child.
Do you fundraise for equipment for your child?