Jordan Spieth, a professional golfer from Dallas, Texas, just won the 2015 PGA Masters tournament, one of golf’s most prestigious competitions, with a record-breaking score. But it didn’t take him long to turn the spotlight over to his younger sister, Ellie — a 14-year-old who has autism.
“I love having her around. She’s an incredible sister, my biggest supporter,” Spieth told CNN following his victory last weekend. “She is somebody who you can watch and then reflect on the big picture of life and understand that all these frustrations in a day, or in a round of golf, are really secondary.”
I cried after an interview with a woman named Hope Cross, whose now husband, Steve Dezember, told her she didn’t have to stay with him when he was diagnosed with ALS early in their relationship. She stayed. I cried because she chose love over a seemingly easier life. And she didn’t have to think twice about it.
Happy tears, sad tears, I’ve-been-there tears, I’ve-never-thought-about-it-that-way tears, I-couldn’t-tell-you-why-I’m-crying tears. Even maybe-I’m-just-a-sap tears. I’ve cried them all. Hell, I’m choked up right now.
When we started The Mighty a year ago, we hoped it’d be a place where people could come to feel less alone and find beauty in their challenges. We pictured this website as an uplifting, inspirational hotbed of news stories. I didn’t know so many people would lend us their voices. To date we’ve had nearly 900 guest bloggers. These people let us share their stories. They let us read about their darkest moments and their highest points. They were honest and heartfelt and vulnerable. They’ve driven me to tears.
Our founder, Mike Porath, likes sports references, so I’ll make one here. In his famed ESPYs speech, the late Jimmy V said we should all do three things every day:
Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.
So to our readers, to our contributors, to the people who volunteered for an interview in the last year while we’ve tried to grow this thing, I want to personally thank you. You’ve made me cry every day. Seven days a week. That’s something special.
When I was in elementary school my Camp Fire Girls group volunteered in the special needs classroom. I remember it taking me a few times to feel comfortable. I just didn’t know what we were supposed to do. Then I figured out you can just hang out with other kids even if they are in a wheelchair or still needed help with basic needs. I even learned some sign language. I remember this time fondly and my compassion for others grew.
Back then, “disability” or “special needs” were big words, but very small words at the same time. Those words meant significant problems. They were the major source of identity for those kids. It was a small, select group of people. That is what disability meant to me. It was different and something to be celebrated and embraced.
Then decades later, my daughter came.
I didn’t identify her as “disabled” or “special needs.” She was just “delayed.” We did therapy starting at age 1. She didn’t walk until she was 3, but she was still just “delayed.” At 3 she also only had a handful of words, but I still struggled to see us as part of the “special needs” community. We worked to find a diagnosis and a group to belong to, but none came. We just kept moving with multiple therapies a week, researching good occupational therapy (OT) toys for each gift-giving holiday, working for every small milestone. We sometimes felt overwhelmed, but I didn’t see us as being part of that community.
I didn’t think she was “disabled enough” to claim to be special needs. And I thought she would grow out of her delays. I thought they wouldn’t want me in their community because my daughter can look “normal” at first glance. Well, I guess she can now that we got rid of the walker. And if you don’t see her braces. And if you don’t notice she can’t talk or still needs help to get into a chair, or if you can ignore my constant swinging, singing, bouncing while we watch her big brother do martial arts…
Maybe she is part of the ‘disabled’ community. Maybe we are a ‘special needs family.’ But will they let us in?
Then her wonderful sunday school teacher approached me cautiously. She said that she volunteered at another church that ran a monthly “kid’s night out” type of event for special needs children and their siblings. She didn’t want to offend me, but thought we may be interested. “Us?” I thought. “Can we go to that?”
I felt nervous and wondered if we would fit in. My husband and I dropped the kids off the first month and we discussed feeling like impostors or taking advantage of this wonderful service that someone else needed more. But this community was lovely and welcoming and our older son made friends. The volunteers were great and loved my children and didn’t flinch when I told them all of my daughter’s differences. We made friends that I could talk to about where to get shoes for braces and possibilities for special schools.
Turns out, the words “disability” and “special needs” are indeed big and small words. Just not in the way I once thought. The community is diverse and welcoming and big. And they are small words, as they are only part of an identity. My daughter is an adorable, nonverbal, loving and stubbornly amazing little sister. And we are a family that goes to church, out to eat, to swim lessons and to martial arts. And a family that loves to go to the movies and on walks and so much more.
And we are a “special needs family.”
I am thankful that “special needs” is a big and small part of our life. I am glad my definition of these things changed. These words can change your life. They changed mine for the better — twice.
The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
As the feedback came in from my last post, “Please Don’t Tell Me Autism Is a Gift,” there was one critique with which I could not disagree. Some said that while they did not think autism was a gift, it had opened their eyes and made them appreciate the small things. It gave them perspective.
Am I saying I am thankful my son goes through everything he does so that I may come out the other side enlightened? No, absolutely not. I would not wish his challenges on anyone for any reason. I just wouldn’t. For me, autism is not a blessing or a curse — it just is what it is.
But just as I shared some of our struggles to give the outside world a peek into our daily lives, there is another aspect of this life I’d like to share to offer a more holistic view of our journey.
I would argue that we experience higher highs and lower lows as parents of children on the autism spectrum (or any children with special needs, for that matter). I can’t really describe to you the feeling when my 4 and a half-year-old used a spoon efficiently for the first time. Remember how excited you were when your 1-year-old first used a spoon? Now imagine how much more intense that excitement would be if you had waited four times that long to see it happen. Not only had you waited, but you and your child had worked tirelessly to make it happen. We worked with an occupational therapist to try to teach our son the coordination it takes to scoop up food and get it into his mouth without spilling it everywhere. We practiced at most meals even though he preferred finger foods. He often would not stabilize the bowl, and he would get frustrated when the bowl would push around on the table. As he raised the spoon to his mouth, he would always flip it and lose most of it. Then if any of it got on him, he would have a meltdown about something messy or wet touching his skin or even his clothes. I’m not going to lie — my heart soars every time I watch him eat independently, something I honestly took for granted with our oldest.
After so many hours of speech therapy and so much effort at home, listening to my son form a sentence is almost magical. There were so many times when he didn’t have the words. There have been so many heartbreaking instances when I would look into his eyes and feel like he was trapped inside himself. Hearing him convey his fears, express his needs, voice his feelings… in those moments, I couldn’t be more proud of something so many take for granted.
When we have a successful outing (even a 30-minute trip to the grocery store), I feel like I’ve just run and won a marathon. Do you know why I post about those good trips? Why I sing my son’s praises that he was able to handle the lights, the noise and the transitions? Because we had so many trips that ended with me in the car in tears. So many half-full shopping carts left in the aisles because I just couldn’t stand the judgmental stares anymore. So many trips have resulted in entire days of me trying to bring him down from the sensory overload. His tears, my tears, so many tears. So when we have an outing that doesn’t result in tears, you’re damn right I’m going to celebrate.
And the nights — I can’t really describe how hopeless I have felt during the bad nights. Not just nights when he was up and talking and I wanted to sleep. Not just the exhaustion. But some nights we had meltdowns, screaming, self injurious behaviors and even times when he would go after me. He wasn’t asleep, but he wasn’t awake, either — he was short circuiting and could not make sense of what his body was going through. During those nights that seemed to last forever, I have never felt more alone. Now, even though he never sleeps through the night, he only gets up once and usually goes back to sleep within an hour without incident. That might not sound like a good night to you, but I cannot even express how grateful I am for six hours of sleep and a night without him going through the trauma he used to.
Higher highs and lower lowers apply to our view of the future too. After receiving the diagnosis and the prognosis, I mourned for the life my son would not have. I don’t know if he will ever play a sport, live on his own, go to college, have a family or have a job. That is a heavy realization — one that continues to weigh on us everyday. But even during mourning there are glimpses of hope. With every little bit of progress with language, with each new skill mastered and with every academic achievement, my heart smiles and I am hopeful for the progress that lies ahead. Plus, having witnessed him so fearful, so miserable and so pained, simply seeing him happy on the good days is enough to bring me unmatched joy.
1. During the first year, you smell like barf, even after you use a wet wipe.
2. You never go to the bathroom alone. You lock the door, you turn the lights off, they know where you are. They will find you. They will yell and bang on the door. They will stick their hands under the door and yell “MOM! MOM! MOM! MA! MA! MOMMY! MOMMY! MOM! MOM!!
3. You step on a Lego and swear. You step on a Hot Wheels car and swear. Giving birth to your children was less painful.
4. You lick your finger and wipe food off your child’s face.
5. You lick your finger to fix your child’s hair.
6. You lick your finger and wipe off your friends’ faces.
7. You fart in public and blame your child.
8. Makeout sessions with your spouse… what are makeout sessions?
9. You go out for dinner with friends, dig through your purse to find your wallet, but all you come up with is a pack of fruit snacks, diapers, wipes, a half eaten sucker and a rattle.
10. You wake up feeling hungover at least once a week, but you haven’t touched a drop of alcohol.
11. Your frequent Internet searches are: How to be a better parent in a week. How to keep your patience when you have none. How to compete with the “other” moms. How to lose 20 pounds in a week. How to stop eating your kids’ leftover food.
12. Your email junk folder is filled with diaper coupons instead of Viagra and vibrator links.
13. Your backseat is filled with juice boxes, crumbs and toys.
14. Your cell phone sits on the table when you go out for dinner with friends because you left the children with dad.
15. You say “just a minute” 50 times a day.
16. You spell out swear words to your friends.
17. You carry Smarties in your purse just in case you need to bribe your offspring.
18. Your back always hurts and your biceps are beautiful from lugging around children.
19. You use your children as an excuse so that you don’t have to go out.
I was 38 weeks pregnant, a pumpkin with a head, achy, tired and moving slowly. I sat at my desk in my office looking at the piles of work and realizing that I no longer had the energy or brain power to focus. I waddled into my supervisor’s office.
“Sylvia, I think I need to start my leave.”
Sylvia* was a tall redhead, brilliant and kind. Her smile said that she knew this request was coming, even though I had told her earlier that I was going to wait one more week. She didn’t hesitate. “You bet,” she said, and finalized the paperwork. My leave started the next day and I was relieved. She was a good supervisor.
One November Saturday, Sylvia asked me to meet her for coffee. She loved coffee, never to be seen without a cup in her hand and I was happy to take a break from my toddler son. We sat outside Starbucks trying to enjoy the last vestiges of warm before winter started in earnest, holding our coffees closely.
“I have decided to leave my job. It is time for me to move on,” she told me. She was going to take a job in another country, one that offered a chance for growth and new challenges. I understood her decision, her need to move her career forward.
I also knew that I would miss her. Over the years we had grown to be friends, not just colleagues, and it wasn’t like she was going to be across town when she left.
The day of her departure drew near. Her office was emptied, diplomas, awards and certificates carefully boxed. I was on the road at a conference, looking forward to a farewell party in a couple of days, when I got a call. Sylvia had been in Starbucks ordering a coffee when she stopped being able to talk.
She was rushed to the hospital, where they discovered a mass in her brain the size of a fist. It was brain cancer, a horribly aggressive brain cancer.
“Don’t look it up online,” my friend Marla told me. “It is terrifying.”
But doctors were optimistic. She was young and healthy and an ideal candidate for new treatments. And they worked! Six months later, doctors declared her cancer-free. She started working again.
We attended a conference in Washington, D.C. a month later. My son was old enough to appreciate the trip, so we decided to make it a family vacation as well. He got to see the dinosaurs at the Natural History Museum and the view from the Washington Monument. He stood in awe at the gigantic yet gentle statue of Lincoln in the Lincoln Memorial and we read the Gettysburg Address together.
On our last night there, Marla, Sylvia, my family and other friends had dinner together in Georgetown. As we walked back to our hotel afterwards, my husband and I took up the rear watching those walking ahead of us. Sylvia was chatting away with my son, the Navigator, holding his hand, and he looked up at her adoringly as they walked.
I remember feeling how blessed we were. Months before, we thought we were going to lose her and here she was holding my son’s hand. I was so grateful that she was there with him, with us.
A few months later, she completed her plans to start her new job and moved away. We kept in touch as much as we could, juggling our jobs and our lives.
It was a year after that night in Georgetown when Marla called me. “Sylvia had a stroke.” The cancer was back. This time it was inoperable. It was just a matter of time.
Sylvia passed away almost four years ago. I still miss her. I miss her laugh and her wit and her brilliance. That memory of her laughing with my son has become exceedingly precious, like a beautiful gem.
I am even more grateful now that he had a chance to hold her hand.
This is what my son told me to say for him for Sylvia’s memorial:
“Dear Sylvia, Thank you for playing with me and carrying me in Washington, D.C. I will miss you. I know that God has made you at home in heaven.”
The Mighty is asking its readers the following: Describe a memory with a loved one that you didn’t realize meant so much to you until they passed away. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.