It’s been 22 years since I got that phone call from my Mom. I remember exactly where I was standing. I remember she was all choked up when she delivered the news to me. My older sister had her baby and they were quite certain he had Down syndrome. I remember shock. I remember silence, and I don’t remember anything else.
Having delivered my third ‘perfectly healthy’ child less than two months prior, my emotions were unsure where to go. I remember visiting my sister, her husband and the baby in the hospital. I remember tears and hugs and desperately trying to find the right words, when I knew that there weren’t any. It seemed everything I was to say would seem trite, wrong, insignificant.
Has this happened to you? You just want to be helpful, kind, understanding in a difficult situation but you feel ill-equipped to deal with the circumstance at hand.
Ignoring the issue, whether it’s a death, diagnosis, or other uncomfortable or awkward topic, is rarely the right answer.
But how can we appropriately convey what we feel, a sympathy for their sadness, disappointment, hurt, angriness…fill in the blank here. How can we convey it? And what do we do with the guilt that we have because said incident didn’t happen to us?
We feel sorry, we feel sad, we feel their pain. How can we be supportive and caring without being condescending and making them feel pitied? How can we be helpful without being too intrusive or seeming to overcompensate?
Fast forward many years and many more difficult situations and I wish I could tell you I found the right answer, the perfect words. But the truth is I’m not sure that I have become any better at handling these things. Our wanting to make things better doesn’t make them so. Our wanting to handle things more eloquently doesn’t make it so. Wishing and hoping things would be easier, different, better doesn’t make it so.
The only thing I do know for sure is that generally something is better than nothing. A hug, a sincere offering, even saying ‘I just don’t know what to say’ or ‘I’m here for you’ is better than pretending that there is not an elephant in the room.
My nephew is now 22. Those who don’t know him probably see very limited verbal skills, challenging behaviours and cognitive limits. All we see is a well-groomed young man, who loves music and friends and movies and life. He is someone who loves laughing and conversation and stuffed animals. He has a big circle of people who love and support him and his family, who accept and love him for who he is and not for what he has or hasn’t done.
My sister is just like every other mother – she worries, she laughs, she gets frustrated, she rejoices, she gets disappointed and she feels proud. No one knows what she has gone through on a personal level with her son. No one knows how many nights she has cried herself to sleep or felt judged or inadequate or angry or guilty.
With the birth of her son came the added benefit of a whole community of wonderful people she might otherwise never have known…(her own clubhouse, with her own peeps one might say). And I know she wouldn’t trade her boy for the world, he is a gift albeit not the one she expected – but a gift nonetheless.
Parenthood is not for the faint of heart, and the easy way out has birth control written all over it. But for those of us who choose to take up the challenge, I suggest we find ways to support each other, not judge each other. To encourage each other, not condemn each other. To use the adage ‘It takes a community to raise a child’ and to do that for and with other families who may have challenges that are different from ours.
Having a ‘perfect’ child does not make you a ‘perfect’ parent any more than having a child with special needs makes you ‘imperfect’.
We all have challenges, we all have struggles, and we are all doing the best we can with the information we have at the moment and with the circumstance surrounding us at the time. If you want to be a better mother, a better friend, a better communicator, a better … – do the one thing that is guaranteed to get you there, it’s my mantra and feel free to make it your own – work harder on yourself than on anything else. Everything else will get better from there.
And to all the mothers out there, fathers out there and fabulous folks who are influential in the lives of children even when they don’t have to be – I say thanks, hang in there and keep doing your best. Your best really is good enough.