Disclaimer: This isn't a xenophobic rant about Italians
One thing I found while living in hospital and I know I'm not alone, is feeling bitter because of the unfortunate, life-changing situation I'm now in.
I unfollowed and unfriended countless people on Facebook due to them posting pictures of their stupid, healthy kids. It is pure bitterness. It's not their fault they have healthy kids and they want to celebrate achievements and milestones like everyone does. It just feels like a kick in the teeth when you think your child will never do that or is being deprived of these experiences. You're being deprived of them too!
This feeling hasn't left me, and I feel guilty for resenting my friends on occasions. When someone posts, "Worst thing happened today, little Billy fell and skinned his knee!", you do feel like posting a snarky sarcastic comment. The phrase 'you wouldn't wish that on your worst enemy' doesn't really apply. You wish that sometimes that even your friends could experience your worst day for a little perspective.
One of the hardest parts of all this is not being able to share how you feel. You should be sharing in your friend's joy, not secretly wishing their baby isn't perfectly formed or for bad things to happen. How could anyone understand the thoughts you're having? Some awful, horrible, sinister thoughts, born out of your own misery and anger? I've felt like one of the worst human beings on the planet at times. On good days when Isla is being a 'normal' baby the feeling isn't as strong, but I've still resented the fact that she'll always have issues and never be normal in the broad sense of the word. We'll always have challenges and restrictions on what we can do compared to our friends.
Through my sessions with the hospital psychologist I learned that it's ok to feel like this. You have to some extent suffered a loss; in the sense that you've lost the life you thought you were getting. You knew life would be different with a baby in it and had probably envisaged what that life would be like. That perfect picture you had in your head is no longer the picture you're getting, but your friends are. So as well as a feeling of grief, you feel jealous. Jealously is an ugly creature but is a normal human emotion. It's not your fault you're in this position. On the other hand, it's not your friend's fault that they have a healthy child. It's important to remember that and maintain perspective. It's incredibly hard but it'll get easier to share others happiness.
I should add at this point I love my baby girl more than words could ever say. Would I change her? Yes I'd take away her life threatening condition and years of pain. Would I swap her for a different baby? Not in a million years.
When we made it to 'apartment status' at McHouse for being there over 10 weeks (depressing in itself at the time), and climbing the list of long termers, we found a poem pinned on the notice board. It really helped me with my feelings and reassured me that I wasn't alone in my inner conflict.
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.