Baby I was born this way

We accept it now.

Lizzie's first beach trip with
Haystack rock behind her.

You have big blue eyes, low muscle tone and a shrilling cry (when you do cry about once every few days). All of these are Lizzie's unique Down syndrome characteristics.

Lizzie we love you. Your hard work is inspiring. You let us roll you over on your tummy to build strength in your neck, back and arms. We make you wait for a bottle while we massage your cheeks and gums to remind you to use them, even though you are innately just calling out in hunger. We shielded our story from all but our closest friends and family until last week, out of ignorance.

Because we didn't know you would walk and talk and be everything that every other baby is and becomes. Now we know you can lift your head high at tummy time. You are determined to see the world around you for as long as your tiny muscles allow. You show love through your cuddles to everyone lucky enough to hold you. And you talk to us. You coo. It's a blessing.

Last week, Elliott and I finally shared with 500+ Facebook friends on World Down Syndrome Awareness Day that our darling second daughter was born with Downs. That was on 3/21/2012, just over four months after Lizzie joined our family.

The heavy bricks fell off my shoulders; a smile spread across my face; I felt like I wasn't in hiding anymore. By sharing with others our "secret," I embraced my life, my family and especially my daughter with Down syndrome. Little Lizzie is no longer the baby with Downs. She is my cute infant who coos, rolls-over, scoots and smiles. She's the baby that I dress-up in tiny Polo outfits and matching PJs with her big sis.

Why did I ever hide? Why did I let myself be insecure these last four months?

I was dealing with emotions in grave conflict with one another. All at once I was happy, sad, embarassed and angry. Happy to bring life into this world; sad that she would have a disability; embarassed that I was sad instead of being thankful for new life; and finally angry for a multitude of reasons.

Now I'm learning from Lizzie, just as I have with Maddi.

It's amazing what a community can do to put you at ease. When we shared our story - you told us of friends and relatives with Downs, you went a researched more about the diagnosis, and you said, "Lizzie picked the right parents."

I'm still fearful of what's to come. There's no guarantees in life, though. We are all unique and I am now excited to champion that for our Lizzie, and Maddi too.

"My mama told me when I was young we're all super-stars....There's nothing wrong with loving who you are because he made you perfect baby, so hold your head up and you'll go far...God makes no mistakes. I'm on the right track baby. I was born this way." ~Lady Gaga

Make time to hear the music

I am a working mom with 4-year-old and 4-month-old girls. My youngest has Downs, which some call a special needs child.
At night, I lean over the side of her crib, and I gaze in the darkness at her gently closed eyelids, and her chest moving up and down. It’s ecstasy. I begin thinking about her future. What school should she go to? What will be our most difficult milestones? What on Earth is she dreaming about now and what is she thinking about during the day?

Having a special needs child was not in my “plan.” It’s not in anyone’s plan but I’m going to stop living by the “plan.” Vision and values; those are different. I want to live by those. I’m throwing out the plan. If I live by this so-called plan, what might I miss?

Maddi getting "screen time"
(not in the doctor's plan)

My 4-year-old Madeleine makes every excuse in the book to protract the bedtime routine. There are nights when we put our foot down. Then there’s tonight, when Maddi laughed, played jokes on us, and whispered secrets in our ears. And all the rules went out the window.

How could we reject this playful moment, though it was already 10:15pm. Though school starts at 8:30am and kids should have 10 hours of sleep. Though the routine my husband and I agreed to was kids in bed by 8pm.

That’s the plan. Let’s throw that out (sometimes).

I want to have a memorable, fun life. Sometimes a “plan” gets in the way. Yes, boundaries are OK but make them wide and encompassing.

What works for me doesn’t work for others.

When Maddi turned 3-months-old, I called my CPA firm and said, “I can’t come back just yet. I need 3 more months.” They said, OK. I couldn’t bear the thought of leaving her.

Some moms opt not to work. When I returned to work, it took me months…almost a year, to accept something that wasn’t in my plan. My “plan” was to stay home with my kids. I re-think this decision multiple times a day. When I’m getting dressed and dropping my oldest at preschool – all day. When I kiss the forehead of my special needs child to say good-bye. When I wake-up at 5am to work, and come home at 5pm utterly exhausted.

Given in at the candy store

Now I love my work and I love my family. I cheat some days and work from home. Last week, I stayed home to be at Lizzie’s physical therapy. Every moment I cherished. We worked on her lip strength for sucking bottles and taught her where her feet are so that she begin grasping them (as other babies commonly do).

Some might think 10:15pm is too late to go to bed; others may think working full-time while raising family isn’t right. But this works for us. Each experience is special, whether it’s working with my clients and co-workers or playing with my children and family. Maybe a plan isn't the right thing to live by. If I am rushing to work, rushing through my commute or something else, what am I missing?

Did you read the Washington Post experiment about Josh Bell?

"A man sat at a metro station in Washington DC and started to play the violin; it was a cold January morning. He played six Bach pieces for about 45 minutes. During that time, since it was rush hour, it was calculated that thousands of people went through the station, most of them on their way to work.

Three minutes went by and a middle aged man noticed there was musician playing. He slowed his pace and stopped for a few seconds and then hurried up to meet his schedule. A minute later, the violinist received his first dollar tip: a woman threw the money in the till and without stopping continued to walk. A few minutes later, someone leaned against the wall to listen to him, but the man looked at his watch and started to walk again. Clearly he was late for work.

The one who paid the most attention was a 3 year old boy. His mother tagged him along, hurried but the kid stopped to look at the violinist. Finally the mother pushed hard and the child continued to walk turning his head all the time. This action was repeated by several other children. All the parents, without exception, forced them to move on.

In the 45 minutes the musician played, only 6 people stopped and stayed for a while. About 20 gave him money but continued to walk their normal pace. He collected $32.00 When he finished playing and silence took over, no one noticed it. No one applauded, nor was there any recognition.

No one knew this but the violinist was Joshua Bell, one of the best musicians in the world. He played one of the most intricate pieces ever written with a violin worth $3,500,000 dollars.

Two days before his playing in the subway, Joshua Bell sold out at a theater in Boston and the seats average $100.

This is a real story. Joshua Bell playing incognito in the metro station was organized by the Washington Post as part of an social experiment about perception, taste and priorities of people. The outlines were: in a commonplace environment at an inappropriate hour: Do we perceive beauty? Do we stop to appreciate it? Do we recognize the talent in an unexpected context?
One of the possible conclusions from this experience could be: If we do not have a moment to stop and listen to one of the best musicians in the world playing the best music ever written, how many other things are we missing."

All before 8am

The bustle starts early in our house - usually at 5am.

I log-in to my computer to squeeze in a couple hours of work or writing, catch up on emails or register for yet another swimming, dance or music class. But first the French Press coffee is set to brew. There's not much I can do without a small cup of coffee.

Lately, I've found myself outside sipping my coffee, like today to welcome spring. I listen to the birds whistle and chirp back and forth, breath in the fresh early morning air, and cozy up in my sweats to enjoy the chill of spring. It's a beautiful season as things come to life again. Even our tulips are getting little bulbs.

Inside, Lizzie begins to stir around 6:30 or 7am. She seems to relish quiet, alone time in her crib before calling out to us for the first bottle. When I enter her room at her first shout, her body is wriggling and her eyes blinking as they say good morning to me. From that first shout, she is ready to eat. There is not a second to waste. So, of course I have already prepared a big bottle as well as a little medicine to sooth her tummy. Like many babies, she has acid reflux but never complains about it.

Madeleine's mornings change everyday. This morning, I went in to cuddle for a bit and she buried her head in the pillows to tell me, "I'm not ready yet." Other mornings she crawls into our bed before we wake-up to plop between Ell and I, and begin watching some cartoons - typically Curious George on PBS.

Within 30 minutes things are moving fast...

Coffee is being remade and warmed up. Loads of laundry are going in or being switched from the washer to the dryer. The dishwasher is unloaded. Lunches for dad, mom and Madeleine are prepped at the same time bread goes into the toaster for Maddi's favorite "sugar toast" (just a little bit of butter and brown sugar, mmmm). The kids are fed (or still eating) and Ell and I finally hop into our showers. It's only 7 by this point.

 

I send Maddi to pick out her clothes. She protests and I start the countdown to three, never getting past one. Ell and I are busy finding pressed work clothes for the day. Somehow the outfit that I want to wear is always wrinkled or hidden deep in my closet.

As I juggle with makeup and drying my hair, I help Maddi climb into leggings and a dress. Lizzie is content with food and patiently plays on her playmat, with a few coos here and there. Ell is out the door by 7:30. Pam (our very own Mary Poppins) is walking in at about 8am. The coffee is warmed up again.

And now Maddi is ready to play, just minutes before we need to head out the door. I give in to a game of hide and seek, fashion show or Storefront Bingo. Just one, then it's shoes, jackets, brush our teeth, and away we go to preschool.

Our drive to school is filled with chatter. The latest is fill-in-the-blank pairings or opposites, and goes something like this... Maddi: "If I'm the apple, you're the ___ (pie)." Me: "If I'm the sunrise, you're the ___ (sunset)." If I'm the brother, you're the sister. If I'm the chair, you're the table. We have fun with this. Other mornings we turn up the radio and wave our hands in the air to dance together.

We arrive at school, lunchbox in hand and whatever toy is popular that day, walk into the classroom and I'm forgotten about. Friends welcome Maddi to play and I'm off to work. It's 8:30am.