I had a bad week. An emotional week. After meetings, appointments and such I felt that tinge of depression start to creep its way back in. What I mean by depression is the ever lasting questions that I have yet to answer… how can I help my child? how can I get others to understand? which help do we need? how can people be so cruel? why? if’s?
When I was pregnant with Carter – I had hopes and dreams for him like no other. When I gave birth to him and held him for the first time – the dreams and hopes became bigger. The day that Carter was diagnosed with autism… those hopes and dreams paused. Not saying that the hopes and dreams I had for him before are not possible – anything is possible… my hopes and dreams for him have changed since the diagnosis. We have a longer road ahead of us than I originally hoped and dreamed.
A new friend of mine shared the following with me this past week. It was something I needed at the right time. Each person reading this post needs to read this and share it… if you do not have a child with a disability… no matter how much compassion you have for a friend or family member with a child with a disability – you still don’t understand. I didn’t until… God decided to make me the mother of my beautiful Carter.
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.
“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 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.”
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.
So – what does a family do when when one member has a disability?
- Life goes on for each person.
- We all must come to grips with new pattern of change.
- We learn to make changes.
- We must learn to ask for help and support.
- We can make positive or negative decisions.
- We learn to make do with what we have to work with and continue to search for new avenues.
- Or we can choose to not deal with any thing at all and “cry uncle”…
Is everything perfect in our family? Absolutely NOT! But, we get through it – sometimes with a smile and sometimes with a smile that we have to fester up because things are really hard for us.
- Life goes on and we all must make adjustments because we love some one so much.
- We don’t judge a loved one by what he or she can and can not do.
- We celebrate life and every thing available that we can do to express thankfulness for what we do have.
My hopes and dreams about the future were paused with autism changing my son’s destiny. (Or did it change?)
- Still we get up every day.
- We put smiles on our faces.
- We concentrate on what he, his brother, my husband and I can do.
- When hope and dreams are paused, we make changes to do what we need and can do.
Nevertheless – it doesn’t mean it is not gut wrenching hard and tears are not shed. But WE tread on – we wear our smiles and tread on.