Fiftieth birthdays are a big deal. You plan trips to Paris with your spouse. You make a party for you and all your girlfriends to live it up in Cabo. Wouldn't that be nice?
But what do you get when you're the mother of a 50-year-old disabled child? Where's your medal? Where's your party?
My sister turns 50 today, a milestone birthday. But for the disabled, the developmentally challenged, a big birthday is sometimes a bitter sweet reminder of the years and years of struggle and toll it's been on a family.
We honor my sister today and all her life means to us. We also remember the medical hardships she's endured, driving her to countless doctor appointments -- the two brain surgeries, the hysterectomy from rampant endometriosis at age 20. She lives at home with my sweet parents who look after her. My parents are in their 70s and 80s. They could use some looking after themselves! But they keep on keeping on, rising each day to help each other, making sure Leslie takes her medications, monitors her time she needs to shower. She can do it on her own, but her unsteady arms and legs mean someone should be nearby just in case.
Leslie can be a little stubborn. She is a 6-year-old trapped in an old woman's body. She likes movies and games and candy. My mom has found stashes of cookies and candy in her room before. Leslie can be petulant and insist on not leaving her room or wanting to change out of the shirt she's worn for four days straight. Like I said, she's stubborn.
Her medical file is as big as a phone book -- psychiatrists, neurologists, ear nose and throat specialists, orthopedic specialists... the list goes on.
I think of the burgeoning special needs community we have in our society today. The statistics of children diagnosed with autism in the U.S. are 1 in 68. Not that autism is always debilitating. So many of those who have it are independent and on their own. But my point is, it will make a difference for our future as a society. We need to prepare ourselves for that.
And the caregivers growing old as well, those who are looking after them, will need help, too. If you're a parent of a special needs child, you must think ahead to your next move as much as you can. You need to be proactive and an advocate for your child's well-being at all times, well past the age of their adulthood.
The exhaustion of today's battles with a special needs child doesn't yield to the forms to fill out for tomorrow or the worry for the next round of therapists needed. It's a constant.
And as blessed as you try to feel, honestly, you know that sometimes you wonder what life would be like if all the little birds left the nest. If your golden years were spent traveling and lounging, what adventures could you do, if your child wasn't sitting at home unable to leave the house without assistance.
Bringing home a baby swaddled from the hospital is the most fulfilling and promising act you can do as a human. And when that bundle doesn't grow and develop like their peers, it's devastating. Having a bird with broken wings, unable to fly, is not what you dreamed of as a parent.
What would life be like if your kid was "normal"?
You push that thought out of your head. How selfish of you! But wait, you've been selfless for 50-some years as a parent -- giving and giving.
When do you get your reward? In heaven? That's what so many tell you, isn't it? And that might be. I'm sure it is. I just wish I could give my parents a reward now. Something that is lasting and takes the burden from them.
To all of you parents out there celebrating the milestone birthday's of your special children, I salute you with all of my heart. I hope as a community we can be here for you. To lessen the load when it comes too heavy for you in your senior years.
So as I wish my sister a happy 50th birthday today, I wish my parents a blessed birthday greeting on them, too. They deserve it.
