Some people have told me that they find it hard to know what to say when they meet the parents of a special needs/medically fragile kid. I can't speak for all in this situation but I thought I'd put together a few do's and don'ts.
...notice and comment on something other than obvious 'defects' or medical paraphernalia. As a mother of a child with a tube taped to her face, I love it when people notice her eye lashes, hair and cute clips and clothes before her other differences.
...feel free to ask respectful questions about Kaylee's differences or medical bits and bobs. I do understand people's curiosity and I want people to understand Kaylee better.
...just say hi and chat! About the weather, any of my six kids, the price of cheese - whatever! Kaylee's differences do not define us or occupy our every waking moment.
..."Wow, she gets her food through a pump? It must be great not having to feed her all the time, you must get lots of sleep." Um. No.
..."Oh, at least you have five other normal kids." Kaylee wasn't the booby prize at the end and it is a stretch to call anyone in my family normal.
..."You are an amazing, brave, wonderful, inspiring person. I could never do what you do." I am just a Mum doing what many other Mums in this situation do. I realise this is intended as a complement but it does make me feel a little like a fraud and a bit uncomfortable. Other Mums of special needs and medically fragile kids have said they feel the same to me.
..."Oh, I know exactly what you're going through. My kid was born a few weeks prem and was tube fed at the hospital/was in PICU for a week with an infection/broke an arm and needed surgery/insert other scenario here." Anyone who has experienced this world knows you can only imagine what other parents in this situation are going through.
..."Kids with syndromes are always lovely." This is kind of like saying all fat people are jolly, all short people are insecure and all dark skinned people are musical. It's called stereotyping. Kaylee will have days where she is lovely and days when she is a right royal pain in the butt - just like my other five!
..."So are you going to have any more kids?" Right now I am not making any life long decisions, I'm just living day to day. I am also trying to fit 36 hours worth of work into every 24 hours (the only reason I am writing this is because I can type while expressing or calming a grumpy baby) so another baby is definitely not priority right now. It's really not a decision that I choose to share with the world at large anyway which is why I usually answer with wisecracks.
While all the don'ts are taken from real life, I do realise that the
people who make those comments are genuinely trying to be nice! I
always try and look to the sentiment BEHIND a comment, even if the
comment itself is less than appropriate.
Things said with love, compassion and friendship are usually welcomed with open arms.