To the guy who bought that last round of shots at Planet Fred’s about 20 years ago, I want to say thank you.
Because of you (and quite possibly the Lemon Drop), I asked a handsome young man to dance. He held his hands up in front of him and shook his head no, but pushed his friend towards me. We took off and boogied.
For the next few hours we shouted into each other’s ears as “This is How We Do It” and “Boom Boom Boom” rocked the dance floor. He was on spring break from Business School at Duke, I was a staff aide to a U.S. congressman. We may or may not have locked lips once or twice in between conversation.
As the lights came on in the bar signaling the night was over, he asked me for my phone number. “Maybe I could come up and take you out on a real date,” he said to me.
As a young 23-year-old in Washington, D.C., I wasn’t sure if I wanted a long-distance relationship. I wasn’t sure if I wanted a relationship at all; but he was cute, so I shamelessly handed him a card with all my digits. With a kiss on the cheek, he was gone.
I spent the cab ride home talking about that boy I met on the dance floor. I spent the next morning fighting off waves of nausea wondering what was I thinking the night before. I never could handle shots.
He waited the appropriate amount of time and called on Tuesday after properly vetting me through a mutual acquaintance. “She’s not an axe murderer if that’s what you’re worried about,” was the confirmation he received.
It was awkward when we met in the light of day. He was nervous, I was unsure. We shared a meal, some laughs and more details about who we were and what we wanted to do with our lives. It was not love at first sight, but we certainly enjoyed each other’s company.
For the next few months, we casually dated and spoke on the phone often. And then one Saturday, when navigating through a crowd, he reached back to grab my hand and the moment took my breath away. He had my heart.
Our big day, right before it poured on us. Thankfully we took our pictures before the ceremony.
A few years later, I conned the most decent man I have ever known into marrying me. Despite a record drought leading up to our big day, it rained in the middle of our outdoor wedding. I think it set the stage for our life together: always make the best out of every situation, surround yourself with people who make you laugh, even in the face of hurricane-strength winds, and always have an open bar and a dance floor.
Some would say that the combination of alcohol, loud music and crowds does not encourage serious relationships. I call this doubt and raise you three kids and two dogs. A full house always wins.
We’re celebrating our 15th wedding anniversary today.
I used to edit our love story, making it a little more family friendly or digestible to people I didn’t know well. No one wants to be judged, so “We met through mutual friends,” became my standard line.
But the truth is, how and where we met is just one tiny sliver of our story, just the first line in our full life.
It would be easy to chalk our relationship up to fate, Kismet or destiny, and sometimes it feels that way. Mostly, however, we have a successful partnership because we work hard and do a whole lot of forgiving of each other for our flaws.
15 years later.
So, to all those young men and women who go out for “Thirsty Thursdays” with the quest to find The One: you can find love —true, unbridled, like-a-scene-from The Notebook love — anywhere, including a bar.
Planet Fred’s is no longer around, but I’m thankful that cute boy is.
The 10-year old girl with the top hat and glasses slides up to the podium. Forgetting to adjust the microphone, she leans down and loudly exclaims: “Do you know which president’s real name is Thomas? That’s right, it’s Woodrowwwwwww Wilson!” The comment sounds more like the introduction for a Chicago Bulls basketball player than a 4th grader giving a speech on the 28th president of the United States.
The audience giggles and my friend leans in close to whisper, “She is a riot!”
I smile big and roll my eyes as I watch my daughter yuk it up in front of roughly fifty parents and her classmates, only looking slightly nervous.
Of the thirty students giving speeches this morning, my daughter is the only one to perform it like a stand up comedy routine. She rehearsed her delivery to ensure a few laughs.
I hear the audience chuckle again as she tells them that Wilson accomplished a little more than just being a father to three girls. I know the speech verbatim as we practiced it for two straight weeks. As it often happens when I watch her “perform,” a slew of other phrases pop into my head:
“She will most likely have learning problems like dyslexia.”
“We are hopeful that she may live a normal life.”
“You need to prepare yourself for a long road ahead.”
These aren’t phrases out of a carefully written speech; instead they are prognoses from a slew of medical experts about my daughter when we weren’t sure how to help her as a struggling toddler with significant developmental delays.
As she passed the first year mark, I knew something was wrong. She did not possess any words and seemed extremely high-strung and frustrated. She was an early walker at 11 months, but she quickly transitioned to walking only on her toes. I often watched her play with her toys in odd ways and she did not seem interested in other children. The rise of autism was all over the news, and of course I was scanning the Internet trying to figure out what was wrong with my baby.
Doctors could not pinpoint what was actually wrong with my her, and we received a slew of mis-diagnoses: apraxia, dyspraxia, Sensory Processing Disorder, PDD-NOS, Asperger’s. The list was long yet never seemed to fit.
Over the course of the next four years, my daughter participated in a range of therapies, including speech, occupational therapy, physical therapy, social skills classes, developmental therapy and more. We saw progress, but our lead case manager prepared us that she would most likely need an aide when she started kindergarten.
“Whatever it takes,” I responded, but I felt dejected and helpless, like we were on a hamster wheel running to nowhere.
I sought solace by building friendships with other parents of children with special needs, other people who understood what we were going through on a daily basis. We compared therapists and shared books. We celebrated successes and offered shoulders to cry on when it was a trying day. We discussed how to deal with our “typical” children and our fears of what lay ahead.
What is it like to raise a child with special needs? Sesame Street writer Emily Perl Kingsley, mom to a son with Downs Syndrome, equated it to planning a vacation but the destination gets changed suddenly.
When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guidebooks 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. 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.
That is what special needs parenting is like. Except I was fine not going to Italy, but I sure wanted to know where I was! I wanted answers. I needed to know where we were in my daughter’s journey so I did not feel so in the dark.
When she was almost five, we saw an orthopaedic surgeon to assess her legs since therapy was not helping. He told us our daughter had a minor case of cerebral palsy. In his opinion, although it did not show up on her MRI, she had experienced trauma in the womb that caused a neurological issue forcing her lower leg muscles to not function properly and interrupting communication with the brain to other regions. This, coupled with some tight tendons, caused her to be a constant, extreme toe walker (think all the way up on your toes, not just the balls of your feet). He also explained that of course her development was delayed. Could you imagine trying to spend your life balanced on your tippy toes and then process information?
While the news was a shock, I was relieved at the same time. The peg finally fit in the hole. CP often causes issues with speech and fine motor skills, but it was non-progressive, which is why we were seeing her developmental skills improve, albeit slowly.
We decided to aggressively pursue treatment for my daughter’s toe walking, which seemed to be a major issue for her both in developing motor skills and her confidence. The doctor would cut her Achilles tendons, elongate them, and then re-attach them in order to allow her to walk on her flat feet without pain. It was bittersweet when the doctor came out to tell us that she had one of the most severe cases he had ever seen, but felt it was successful.
Immediately after the surgery, she began to flourish in leaps and bounds. With a more centered core, it was easier for her to find words and process information for conversation. Her spatial awareness improved. Her sensory needs reduced and she expressed a desire to learn to read. She became more confident and easier to deal with since she could now communicate her wants and needs.
On her first day of kindergarten, she walked through the door on her flat feet and without an aide. Although she was still behind her peer group and required additional support in a few areas, she had surpassed all expectations.
The rush of clapping brings me back to the library, where I see my daughter’s braces-filled smile as she nods to the crowd, acknowledging the applause. My husband and I look at each other, grateful to see her exceed our expectations yet again.
After the last speech, the kids assemble for photos, and my daughter joins three of her friends, arms around each other, smiling for the iPhones snapping pictures at a rapid pace. It is hard to imagine her as a crotchety three-year old that could not even say, “More milk.”
Five years after her surgery, nine years after our first appointment to assess her development, my daughter no longer has what the State would deem “special needs.” She reads at an above average level and excels at math. Our time allocated for additional therapy is now used for horseback lessons and theater class. Kindness and compassion have replaced frustration when I describe her every day attitude.
Yet, sometimes, it is hard to let go of the past, the life I lived as a special needs parent. It’s hard not to worry each time she doesn’t understand a piece of homework or struggles to find the right words. It’s hard not to obsess over any small idiosyncrasy or awkwardness. It’s a struggle to accept that her differences have now become her strengths instead of her handicap.
I know I am one of the lucky ones. It is unusual for a child with severe developmental delays to be so heavily impacted by a surgery or even years of therapies. For most, it is a life-long struggle.
I know we are lucky, and I am grateful for this. And although I wish my daughter’s beginning was less complicated, I am thankful for what I have learned, such as:
Opening up my eyes to the beauty of different.
Understanding that I am my child’s best advocate — and sometimes even highly educated, well-meaning professionals are wrong. Always believe you child can do more than what you are told.
Accepting that it is okay to take help.
Celebrating my daughter’s milestones on her schedule. Little things are always big reasons to celebrate.
Struggling can bring your entire family together, and can impact the kindness and compassion of all your children.
But most importantly, I learned to celebrate my daughter for who she is, and not worry as much about what she has.
My journey with my daughter hasn’t changed. I will still advocate on her behalf and continue to ensure she has all the resources to succeed in this life; however, I am slowly accepting that our path is headed in a different direction. We may be leaving Holland and headed to Italy.
There is a line in my daughter’s speech that she delivered with impeccable precision and compassion: “President Wilson struggled in school in his early years. His teachers thought he may have dyslexia, but he eventually overcame it.”
May similar words be spoken about my daughter one day as well.
Author note: Special needs parenting is hard. In no way do I want to portray that most kids can outgrow their developmental delays or diagnoses. This is only a reflective essay regarding my experience with my daughter.
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It was one year ago when I permanently shut the doors of my public relations business and started writing full time. I have gained so much in the process: a new set of supportive friends that get the agony and elation of birthing stories; a group of “followers” whom I have grown to love and admire; a better appreciation for both the time and dedication it takes to be a writer; and a realization that I am actually living my dream.
I have also gained 6.8 pounds according to my scale.
I have noticed my yoga pants getting a little more snug on my thighs, and my skinny jeans cutting off my circulation a bit more lately, but I attributed it to the fact that I was a wee bit dehydrated. My choice of clothes started to dwindle as I began feeling uncomfortable in certain outfits. And then one day, as I was about to nosh on my bagel with cream cheese before plowing into an essay I wanted to write, I decided to hop on the scale. And there it was. Well, I’m not going to tell you what it said, but let’s just say it wasn’t pretty.
I decided I needed to leap into action, so of course that meant I checked Facebook, my blog stats, responded to a few emails and ate my bagel. Then the light bulb went off. I remembered I gifted my husband a fancy FitBit for Christmas. One designed especially for runners, with all the bells and whistles. Because my husband and I are infamous for taking forever to set things up, I was confident it was still in the box. I ran downstairs, grabbed it and then rushed back to my computer.
I quickly installed the software and slapped it on my wrist. This would motivate me. This would tell me how I gained seven pounds. This would be the change I needed. Right after I wrote my blog post.
Several hours later I hit publish. My goal for the day was done. I looked at the time on my computer and saw I had exactly 45 minutes to take a shower, grab a late lunch and get my kids from school. I would then chauffeur them around for the next three hours before coming home and taking care of the loose odds and ends around our house.
I forgot about the FitBit until bed time when I checked the watch. 2700 steps. 1.4 miles. That is all I moved the entire day. That labeled me as sedentary…one step up from complete inertia. Sloths were more active than I was that day.
Yes, I know that numbers on a scale don’t mean everything (or anything). Yes, I know that the way I look doesn’t define me. Yes, I know it’s what’s on the inside.
But following my dream was actually making me fat.
Now, don’t get me wrong. I do move around on most days. I go to the gym a few days a week. I clean my house (sometimes.) I walk the grocery store aisles and my kids’ school. But on days that I don’t have much on my schedule, the days I save to write, the days I sit on my bed spinning stories, I am a statue with moving fingers. My FitBit weeps for me.
And this new lifestyle trickled down to my normally healthy eating habits. I didn’t leave myself enough time to go to the grocery store, so I guess it’s nuggets for everyone tonight! Or, it’s Pizza Friday, and Pizza Sunday, and sometimes Pizza Thursday, but at least Huff Post picked up my article!
While writing is what I love doing best, I am realizing that it doesn’t always allow me to be my best. I have spent a lot of time the last few days analyzing my time management and how I can do things better, how I can be better, how I can achieve my best self.
What I have realized is that life doesn’t have to be an either/or scenario like so many of us make it….like I made it. Life is about balance. Stopping writing for a few days allowed me to remember this.
I will lose the weight. And if I don’t, I’ll at the minimum become more healthy, which is what it’s really all about (and feeling good in my skinny jeans again.) I am determined, and even reached 10,000 steps the other day in addition to hitting the gym. I allow myself a certain amount of time at my computer and then I make myself get up and move. I have broken up with my mean boyfriend Carb and replaced him with Kale, who is a little rough around the edges but much friendlier to my thighs.
But most importantly, I want to show my girls that you can live your dream without losing yourself. Even if that means giving up pizza a few nights a week.
But don’t count on me giving up wine. I’ll throw my FitBit right at you for suggesting that!
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