It's a bright future, don't sigh for me

Snuggle-bunny

Please don't shake your head and say I'm sorry.

Save the sigh with a long harumph for someone else.

When I tell you that my 5-month-old daughter has Down syndrome, congratulate me.

Congratulate me for a healthy, beautiful baby who has a future as bright as the next child, who has huge opportunity on the path ahead, in a world that I know she will challenge to keep pace with her pursuits of a new norm. A norm where people are not judged or limited by a diagnosis but instead supported and championed for being unique.

This week, columnists filled our newspapers with stories of triumph. And I'm not talking about the NBA and Stanley Cup playoffs. It's closer to home, in many ways.

Two articles in the Oregonian showcased a young runner who won her race despite crossing the finish line dead last: http://www.oregonlive.com/sports/oregonian/john_canzano/index.ssf/2012/04/canzano_a_big_moment_at_a_yout.html and http://www.oregonlive.com/sports/oregonian/john_canzano/index.ssf/2012/04/canzano_story_of_the_girl_who.html.

Then, columnist George Will shared his 40-year-old son's "gift of serenity" with millions of readers. (http://www.dallasnews.com/opinion/latest-columns/20120503-george-will-the-gifts-of-jons-down-syndrome.ece).

Playful Lizzie reaching for toys

I know it's not all about triumph and serenity. Gosh, parenting is about so much more.

I also don't mean to put a blanket over all of those who respond positively when I share our news. In fact, most people are excited for us. They embrace us with such love. A previous co-worker who once worked for Oregon's state mental institutions (which were closed decades ago), met me for breakfast last week and said, "I don't think I'm going to have the response that many have had for you. I think you are going to have a wonderful journey and experience."

I couldn't agree more.
 

But before I met Elizabeth, I was one of those people who would have said, "I'm sorry," with a long sigh.

Lizzie is a sister, and much more



I was one of those people who thought having a special needs child would alter things for the worse, not the better. As I reflect on those early days, I blame the media, our society and our doctors for this because I was afraid. Would you believe that the popular http://www.babycenter.com/ calls Down syndrome a problem?

Here's a quote from the site: "Many parents-to-be worry that their developing baby may have Down syndrome or some other chromosomal abnormality. Screening tests help you assess your baby's chances of having this kind of problem." 

No wonder why we are so fearful. No wonder why I'm so anxious to brag about Lizzie to others, yet wonder whether I should tell this person that she has Downs. If I do, I am uber-quick to preface it by: "Lizzie is unique and we are thrilled to raise her. Lizzie has Downs." This is somewhat out of self-protection.

But sometimes I'm not quick enough, and then come the sighs and the apologies.

I get it. That was me in the early days. I was so fearful that I became depressed, suffered from post-traumatic stress, and simply had no will to move forward. Lizzie slept and slept, for days. I wish I could have enjoyed those days.

That was then, this is now.

 

Think about how fortunate we are to have Elizabeth, our little angel who doesn't have a "problem" (as http://www.babycenter.com/ calls it) nor is she "disabled" as others would label her. Instead, she is my daughter, Madeleine's sister, Samantha and Abigail's cousin, a niece, a granddaughter and a friend.

She is a little girl who started rice cereal today, just like other 5-month-olds. She sits up (propped against the couch), she loves tummy time far more than her big sis Maddi did, she tracks objects, turns her head when someone enters the room or calls to her, snuggles with a grip so hard that you never want to let go.

I understand when you say, "I'm sorry."

I was there. But I've learned, and I hope you will too. Don't be persuaded by the media or the doctors. Follow God. Follow your heart. I promise you will see the beauty in others that may not be exactly like you, and you will grow as I have.

Well hello old friend

Grandma Patti coloring with Maddi in March, just after ending
five weeks of radiation and chemo treatments

Last month, I barely posted a word on this blog.

It was a busy time.

The mix starts with being a CPA. It's my spring busy season. Then throw in a few emergency room trips for grandma, getting Maddi registered for nine summer camps (one per week), organizing three summer vacations, and comforting Lizzie through early teething.

It was a busy time.

I've missed you old friend. Three months ago, I found solace through writing this blog, spilling conflicted emotions and stories onto these pages as a way to remember, work through and share what I felt at the time was an overwhelming task. With Elizabeth's unexpected diagnosis of Down syndrome in November and grandma's diagnosis of primary brain cancer in January, I was dealt a hand that few receive in a lifetime.

My little sis, Lillian, with the girls

My blog was a way to find comfort. At the same time, it became my long-sought after means to document our life through words and pictures that I could leave behind for our kids. I plan to print out these pages and pictures into books every 6-12 months so that our experiences and feelings are not lost. Instead, the girls will have a way to understand just what mom was thinking when....

...Lizzie joined us amidst respiratory distress, low blood sugar and an unpredictable diagnosis of Down syndrome. In the early days, I wondered what this meant. Would she walk? Talk? Love us? Could we love her?

...Faith taught me that I'm not walking alone. Instead, God is by my side.

...Holidays brought our family together. At Christmas, we jumped from house to house, visiting dozens and dozens of relatives who welcomed us with open arms.

So I think I'm back. Back to documenting our life on these pages that I will eventually print into books for lasting memories of a remarkable experience - life!

I'm on your side

On a weeknight just less than a month ago, I packed my pillow and comfy quilt, headed up to Oregon Health Sciences University hospital and slept on a fold-out cot just inches from my grandmother's bedside.

She was hospitalized after a blood test showed her levels of white and red blood cell counts were dangerously low. This was an unexpected turn of events. Despite a diagnosis of brain cancer, we thought treatment with chemo and radition would improve her outcome. Instead, the chemo is attacking her bone marrow. A drug we thought would help is fighting us.

That night, grandma and I watched some TV, ate dinner, and drifted off to sleep.

At midnight, the alarms went off because her fluid bag was empty and needed to be switched. At 1am, they rolled her off to get a chest X-ray. And at 4am, I left my cot and crawled into her hospital bed. I wrapped my arms around her and we fell back asleep.

You would do that for your best friend, right? I would.

I did it because I couldn't bear to be away from her; I couldn't bear for her to be alone; I couldn't bear for her to feel she was missing something. Instead, she was the center of attraction in my life for several hours (even though a few of those were while we slept). I was by her side and I'm on her side.

Gosh, grandma... please, please snap out of this! It's not fair that you have brain cancer and that your physical body is fighting against you, against all of us who love you so much.

A night in the hospital turned into several days and turned into more than a week. It was a roller-coaster. Blood tests everyday to determine the next course of action. Rounds of doctors visiting in the morning and at night. Then came the hospital-induced delirium. In the morning, grandma was always asked her name, her location and the president of the U.S. As the days wore on, the answers became more and more difficult for her to find. In fact, those of us there started having a hard time finding the answers. Delirium set in for us, too... no surprise.

Finally a week and a half later (plus 2 transfusions), grandma was released to the Ritz Carlton of skilled nursing centers in the most beautiful area of Portland. Only she doesn't see it as the Ritz. She wants to go home, to her condo where her things are, where her memories are. As we enter this next phase, the most important thing to do is honor grandma's wishes. Do you want to go to the beach? OK. The mall? Sure. Eat candy and ice cream? No problem.

The doctors finally disclosed to grandma this week that she has a "limited" amount of time. We all do, in fact. What do you think topped her list? Going home. Seeing her great-granddaughters (Maddi and Lizzi). Getting to Hawaii. I think all that can be accomplished. At least I hope.

For a woman that stood by my side for 35 years, I want to help facilitate all of this. You see, this is a grandma who believed in me when I got suspended in high school for something I'll disclose another day. She talked to me from 1,000 miles away every day as a drove between Boulder and Denver to work the overnight shift at AP. It was 7am when I got off work, and she talked me all the way home to make sure I was safe. This is a role model who taught me about dining at the country club, writing thank you notes or any type of note for that matter, making sure I was well-kempt (all the time, regardless of the situation), wearing fine jewelry and using fine China instead of stashing it away for "special occasions." Every day is a special occasion. Live life to its fullest while you are here.

I will always be by her side, and on her side. Her wish is my command.

Pizza, toys, playdates - it's Friday!



Special Friday lunchable

“Is it special Friday, yet?” Maddi asks.

All week long, we talk about “Special Friday.” Think half-day preschool instead of all day, pizza for lunch, playdates with BFFs, family dinner and game night. As an added bonus because of all the fun: On Saturdays we sleep in (until gymnastics at 9am).

In a house where both parents work, it’s essential to find “special moments” to look forward to. All week long, we plan for Friday. While we’re getting dressed at 8am for school, rushing to make dinner and do the wash at all other times during our busy week… we talk about the upcoming Friday. What will make Friday special this week. Of course, “special” has evolved over time.

As an infant, dad created Maddi’s first special Fridays. He scheduled himself to go into work late on Fridays and spend the morning with Madeleine. They picked a different breakfast spots, such as the Pancake House or La Provence. Elliott gained tremendous confidence with our tiny infant as he learned to do the diaper bag and much more during those special Fridays. After a few months or more, he needed to spend more time at work.

Special Fridays took on a new form.

Grandma Patti with Maddi

Maddi and her friends meet at Park

In her 2’s, Maddi spent special Fridays all day at grandma Patti’s, tooling around Lake Oswego, walking the neighborhood to complete errands at the post office, the bank and finally a visit to the park where they would often run into friends, Kate and Carter. Each Friday in 2009-10, I would drop Maddi off at grandma’s apartment.

Grandma would get up early and place a teddy bear on her doorstep holding a napkin full of jelly beans (likely the cause of her first cavity that we learned of last week – the fun outweighs the cavity, though). Special Fridays at grandmas also meant a morning to relax, watch cartoons and cuddle with each other. Grandma made special soup and kept Maddi full with tons of fresh berries. They often visited Frog Pond toy store, also within walking distance of grandma’s apartment.

Now Maddi’s a preschooler, and Special Fridays continue with a new twist.

First day of preschool

Elliott started this one, too.

Together we decided to make Fridays only a half-day at preschool. Elliott drops off and I pick up. Since Elliott isn’t much into packing a preschool lunch, he started a new tradition. On Friday mornings before school, they swing by Fred Meyer and Maddi picks out a Lunchable Cheese Pizza. It’s the most unhealthy meal I’ve ever seen, filled with a pizza, a Capri-Sun and Laffy-Taffy. I guess not all lunches must have the balance of fruit, veggies and dairy – as they do Monday through Thursday. Splurging is fun – it makes Fridays special.

I pick up Maddi early from school, at noon. We find something fun to do like a playdate or a park visit or a project when it rains. On some Friday nights, we celebrate Shabbat because she goes to a Jewish school that sends home all the fixins’, including candles, challah and a Kiddush cup.

This week, I did Special Friday. Maddi, Lizzie and I started at Fred Meyer to pick-out pizza, grabbed rainbow of tulips, and of course had to buy one of those silly check-out stand must-haves at kid’s eye-level (this was a miniature Cinderella). We got to school, and we could already hear the Shabbat singing in the ballroom with about 80 toddlers and nearly as many parents. Rather than drop-off Maddi with a kiss and hug so that I could dash off to work, I made time to hear the music.

Lizzie and I took a seat with Maddi and her classmates and sang for about an hour. We sang the prayers and enjoyed a spontaneous moment.

Maddi with classmate, William, celebrating Shabbat last Friday

Work deadlines were looming. Those will always come and go, and I’ll meet most of them. It’s April 1st – my deadlines now are very tight as a CPA. However, Special Fridays will always remind us to slow down, listen to the music, and treat ourselves.

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.