Just the other day I ran across an article on Redbook magazine asking “Would your friends be there for you in a Health Crisis” that made me stop cold. As I read it, I was nodding. Oh yes, I’ve been there.
You see, as I explained, or at least tried to explain in my book ‘Losing Alex‘, I was completely unprepared for the heartfelt amount of support-and the enormous lack of it after the unimaginable happened and I had to bury my first born. Then, when my son Nicky was born with a horrid disorder and the Doctors gave him a year to live, it seems as if everyone disappeared. Everyone. Well, maybe not everyone, but it sure felt like it.
My immediate family (my parents and my sisters and their families) have always, always been there for me, but they live on the other side of the globe, so inviting them for coffee or tea to have a chat or have them come help me when I was losing my mind was out of the question.
There was really no other family nearby, nobody came or called which I translated to ‘nobody cares’, and when a “relative” told me I was blowing things out of proportion when she had never seen Nicky’s wounds or heard his cries of pain, I thought I might drive a few hours to her house and punch her. BTW, this ‘relative’, which is a pretty close relative to Nicky relationship-wise, hasn’t seen, asked, emailed, sent a card or nothing to Nicky in 7 years. As a matter of fact, most of our U.S. based “combined” relatives haven’t seen Nicky in years, some as many as a dozen years, and they do not live on the other side of the globe, they do not even live on the other side of the country! With such caring relatives, who needs enemies?
By the time Nicky was 10 months old I was a horrid mess. I went to a therapist to help me out and my heart sunk when I saw that she was pregnant. Are you serious? Let’s see… my first baby died at birth, I lost the second to miscarriage, and my third might live a year and I have to tell all my sob stories to a pregnant therapist??? I sat there crying for an hour to a 7-months-along pregnant woman, who told me all my feelings were ‘perfectly normal’ and gave me a prescription for anti-depressants. Gee, thanks!
Over the years I’ve learned to toughen up and sometimes I went too far the other way. It was a balancing act, one I am still working on. Was I bitchy, oversensitive, callous? Oh yes, and I didn’t like it. Just last week I was telling my dad how this is why some people with disabilities and their parents become mean: the loneliness, the judgement, the stares, the stupid questions, the nasty comments, the lack of help, it all adds up. These families are in SUCH A DIRE NEED of love, I can’t even begin to describe. We need love, love, love, love and MORE love.
I can’t stress that enough.
Do I understand that people do not want to talk, visit or engage in a conversation with us because they don’t know what to say? I do understand it, but there is Google now, Google ‘what to say to a special needs mom’ or ‘what to say to a bereaved mom’ and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet. Try it, seriously. You no longer need to abandon your friends and families when they need you, just Google what to say. You will be their hero forever.
A couple of months ago, trying as I might to raise awareness for EB (as I have since Nicky was born), I posted a photo of Nicky, now 16, asking for a ‘One Million Likes’ for EB Awareness on my EB Info World Facebook Page. Well, we’re almost there now and some amazing things are happening. EB is getting a much needed buzz and I could not be happier. Tons of volunteers are coming out of the woodwork, people who never knew what EB was are now donating to the various charities, some have put it upon themselves and get involved, some are doing fundraisers, people with connections want to make a big impact. I got a small hint at the various things on the pipeline and it’s all amazing. Well, maybe not all. I try to keep my composure, my wits and humor about me, but sometimes it’s just too much. Life get to be too much. People are too much. Strangers can be absolutely wonderful, even better than family, but a very few (and there are only very few, I must always remember that, an extremely small percentage) are the most disgusting people ever. Some of the comments I received on my son’s picture have been so toxic I promptly deleted them. They range from the ‘this is fake’ to ‘likes do nothing’, some threw in cuss words for good measure, and at least a dozen people sent me that ‘canned’ Facebook message ‘This picture bothers me, please delete it‘. A child that suffers bothers you? Really? What kind of MONSTER are you?
But, I digress. This blog is not about people being mean, there will always be a small percentage of people who are ignorant, clueless & hateful. There might not be enough love in their life perhaps? This blog is about Love. What the world need is Love. The Beatles sang about it, countless movies sang its praises, remember how you catch more bees with honey? It’s true. Count your blessings every day. I do.
