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It's my birthday. `
39.
Thirty-NIIINE.
How did it happen? Twenty-nine feels like last week. Twenty-nine, flaunting
her carefree life. Working, dating, jet-setting... who WAS that person? One
thing's for sure, she didn't know the first thing about autism.
Twenty-nine soon became thirty-four. The last year I remember having the
life I'd planned. Married. Baby Caroline just turned one. Building a house
with room for more kids.
But then came thirty-five. And ever since, I'm convinced I've been living
someone else's life. And any day now, I'm ready to give it back.
Because, you know what, this is not the life I signed up for.
Nope. Not me. I'm a planner. And none of my lists, outlines or schematics
accounted for this.
Not the notebook full of potential universities. Not the list of future careers.
Not the "goals" section of my resume. Not even the match.com ad I placed
looking for dates.
"Fun loving 29-year-old seeking travel and romance giving way to stress and
frustration with the addition of an autistic child."
The only hint at any of it might have been in our wedding vows.... "for better or
for worse." But even then, who really thinks the "for worse" will come at
thirty-five?!?
Of course everyone's life takes unexpected turns. I am not alone. But for
those of us whose lives have been senselessly uprooted... whether it be due
to an accident or a disease or autism... birthdays can be hard.
Birthdays are a day of reckoning. Our own personal New Year. A day in
which we reflect on the past and contemplate the future.
Which brings me to...
My wish
A dear friend posted on my Facebook timeline that she hopes my wishes
come true.
And so I thought, and thought, about what my wishes might be.
Of course, there's the obvious wish. That Caroline will fully recover. And
actually, in addition to the Guest Assistance Pass at Disney, that's a definite
perk of having a child on the spectrum. You always have a built in wish.
Beyond that though, I would have to wish that our world begins to see. Really
SEE the true impact on society of all of the "greater good" children and decide
to do something about it.
Because it's not just the children. Of course, our children's lives - sacrificed
by the choices of our nation - are the most tragic part.
But what about all of us? The moms and dads. Parents, abandoning their
own hopes and dreams to care for their sick children.
It's not just 1 in 91 children. It's 1 in 91 mothers, giving up a life they planned.
One in 91 fathers, forgoing their own needs. So many families strapped by
the emotional and financial burden of raising a child on the spectrum.
Homes torn apart, literally and figuratively by the insidious beast. Funds,
earmarked for vacations and college, siphoned away to buy supplements
and provide therapy.
Not only have our children's lives been unfairly altered, so have our own.
What about us?
When will we be able to look at a carefree twenty-nine year old with pure
jealousy of their youth, not needing to worry that he or she may someday be
trading in their own dreams for days and nights revolving around autism?
So that is my wish.
For the hardest thing I have ever known in my life to go away.
For us.
For everyone.
Forever.
I wish for an end to the senseless destruction of dreams.
I wish for my life back.
One string attached
Always one to make special requests... my wish is no exception!
If it's granted, WHEN it's granted, my memories and friends must remain intact.
The people I've met and all that I've learned on this journey have made me a
better person. In many ways, ironically, I'm lucky.
I'll never worry about whether Caroline is the most popular girl in school, I'll be
grateful she has a friend. Yale or Harvard? Not even on the radar. I'll be
happy she's going to college. And if it's a community college in the next town,
I'll be the proudest parent there ever was.
Even the smallest accomplishments, like having the strength to open the car
door all by herself this morning are celebrated and treasured.
Autism has a way of putting everything in perspective.
So when the day comes that my life is back, it really won't be back. And I
wouldn't want it to be. I don't want to unlearn what I've learned or 'unfriend'
my amazing friends.
The parents in this community know what it means to have a built in wish.
Something we've set aside our own hopes and dreams to accomplish.
Something we're stronger and better for having endured.
That part of me, I will never give up. I owe an enormous debt of gratitude to
everyone who has helped me feel less alone and given me the faith to press
on even in the most challenging of times.
I am blessed in ways I never imagined possible.
And would you look at that... turns out my life is pretty wonderful after all.
Happy Birthday to me. Thirty-nine. Going to be a banner year!
***
This blog is dedicated to all the parents who have it much, much harder than
my husband and I. Having only one child, we will never know that challenges
you face and you have our utmost admiration.
On your birthdays I hope you can take a moment to dream. Really dream of
the day your child is recovered and what you and your family will do to
celebrate!
39.
Thirty-NIIINE.
How did it happen? Twenty-nine feels like last week. Twenty-nine, flaunting
her carefree life. Working, dating, jet-setting... who WAS that person? One
thing's for sure, she didn't know the first thing about autism.
Twenty-nine soon became thirty-four. The last year I remember having the
life I'd planned. Married. Baby Caroline just turned one. Building a house
with room for more kids.
But then came thirty-five. And ever since, I'm convinced I've been living
someone else's life. And any day now, I'm ready to give it back.
Because, you know what, this is not the life I signed up for.
Nope. Not me. I'm a planner. And none of my lists, outlines or schematics
accounted for this.
Not the notebook full of potential universities. Not the list of future careers.
Not the "goals" section of my resume. Not even the match.com ad I placed
looking for dates.
"Fun loving 29-year-old seeking travel and romance giving way to stress and
frustration with the addition of an autistic child."
The only hint at any of it might have been in our wedding vows.... "for better or
for worse." But even then, who really thinks the "for worse" will come at
thirty-five?!?
Of course everyone's life takes unexpected turns. I am not alone. But for
those of us whose lives have been senselessly uprooted... whether it be due
to an accident or a disease or autism... birthdays can be hard.
Birthdays are a day of reckoning. Our own personal New Year. A day in
which we reflect on the past and contemplate the future.
Which brings me to...
My wish
A dear friend posted on my Facebook timeline that she hopes my wishes
come true.
And so I thought, and thought, about what my wishes might be.
Of course, there's the obvious wish. That Caroline will fully recover. And
actually, in addition to the Guest Assistance Pass at Disney, that's a definite
perk of having a child on the spectrum. You always have a built in wish.
Beyond that though, I would have to wish that our world begins to see. Really
SEE the true impact on society of all of the "greater good" children and decide
to do something about it.
Because it's not just the children. Of course, our children's lives - sacrificed
by the choices of our nation - are the most tragic part.
But what about all of us? The moms and dads. Parents, abandoning their
own hopes and dreams to care for their sick children.
It's not just 1 in 91 children. It's 1 in 91 mothers, giving up a life they planned.
One in 91 fathers, forgoing their own needs. So many families strapped by
the emotional and financial burden of raising a child on the spectrum.
Homes torn apart, literally and figuratively by the insidious beast. Funds,
earmarked for vacations and college, siphoned away to buy supplements
and provide therapy.
Not only have our children's lives been unfairly altered, so have our own.
What about us?
When will we be able to look at a carefree twenty-nine year old with pure
jealousy of their youth, not needing to worry that he or she may someday be
trading in their own dreams for days and nights revolving around autism?
So that is my wish.
For the hardest thing I have ever known in my life to go away.
For us.
For everyone.
Forever.
I wish for an end to the senseless destruction of dreams.
I wish for my life back.
One string attached
Always one to make special requests... my wish is no exception!
If it's granted, WHEN it's granted, my memories and friends must remain intact.
The people I've met and all that I've learned on this journey have made me a
better person. In many ways, ironically, I'm lucky.
I'll never worry about whether Caroline is the most popular girl in school, I'll be
grateful she has a friend. Yale or Harvard? Not even on the radar. I'll be
happy she's going to college. And if it's a community college in the next town,
I'll be the proudest parent there ever was.
Even the smallest accomplishments, like having the strength to open the car
door all by herself this morning are celebrated and treasured.
Autism has a way of putting everything in perspective.
So when the day comes that my life is back, it really won't be back. And I
wouldn't want it to be. I don't want to unlearn what I've learned or 'unfriend'
my amazing friends.
The parents in this community know what it means to have a built in wish.
Something we've set aside our own hopes and dreams to accomplish.
Something we're stronger and better for having endured.
That part of me, I will never give up. I owe an enormous debt of gratitude to
everyone who has helped me feel less alone and given me the faith to press
on even in the most challenging of times.
I am blessed in ways I never imagined possible.
And would you look at that... turns out my life is pretty wonderful after all.
Happy Birthday to me. Thirty-nine. Going to be a banner year!
***
This blog is dedicated to all the parents who have it much, much harder than
my husband and I. Having only one child, we will never know that challenges
you face and you have our utmost admiration.
On your birthdays I hope you can take a moment to dream. Really dream of
the day your child is recovered and what you and your family will do to
celebrate!
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