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.

C'est magnifique, to quote my 4-year-old

Happy Birthday, Maddi! A couple weeks late, I know. But hey you were a week past your due date when you were born so we're even.



In training for Rose Queen



Maddi and dad on the slides



In her words, life is c'est magnifique.

Of course, she learned that from her favorite books and shows: "Madeline."

I actually think we've done something right with this gal.

Our Madeleine (with an "e") has a sense of humor, loves others, loves her sister beyond measure, has an aptitude for learning languages, follows the rules (except with mom and dad in the room). Madeleine says things like "you are incorrect." Or her favorite, "my name is Jennifer Dale, D as in David - A - L - E." She is all ears, and hears me spell that out on the phone all the time.

This year, we saw our first play together: Pinkalicious. Madeleine sat next to B.F.F. Kate-Margaret and both were memorized. In a couple weeks, we are going to the Youth Philharmonic's cushion concert, where all kids under 8 are welcome to bring pillows to sit on and listen to the live music of young players. Music has been a big part of Maddi's life since birth. When she was just a few months old we went to Music Together for years.

We go to birthday parties nearly every weekend. Let's see, she has 13 classmates (so that's most of October, November and then February (skipping the holidays). Then there's playgroup friends whose parties we also attend. The parties are usually at Pump It Up or other play places, and the kids are utterly exhausted afterward. Thus, naptime on Saturday or Sunday lasts about three hours!

Last weekend, we attended an adorable party at Once Upon a Time, a horse stable in West Linn. What fun to be introduced to horses in such a welcoming environment. Maddi loved riding the pony (we are in big trouble here; expensive horseback riding lessons could be in our near future). She was a natural, holding onto the saddle horn and keeping her heels down and toes up. She was fearless.

But there are things Maddi fears. She doesn't like to be alone. She is not a huge risk-taker. She is adventurous yet this little one has a built-in "line-in-the-sand" that she is sure not to cross. Swing too high, and she gets nervous. Walk without hand-in-hand, and she rushes to your side. After 4 years, this kiddo finally sleeps soundly in her own bed and bedroom (a recent accomplishment). She reminds of the days when I would shop with Grandma Patti and never wander far away.

Maddi loves the movies and has seen everything G-rated, a million times over. As a toddler, she loved Mamma Mia (I think it was the music that got her). She eats like a bird, mostly just fruit for this kiddo. No pizza or mac and cheese, which I thought were kid staples. But she sneaks chocolate whenever she can.

She loves art projects and cooking, helping me in the kitchen and helping with Lizzie. I have an intuition that Maddi will be a huge Lizzie cheerleader. What's so interesting to me is that Maddi knows Lizzie as her sister, and not Lizzie who has Downs. None of us will get that opportunity to know Lizzie first as someone without Downs. Maddi will, and their bond will be so strong.

So happy birthday to my compassionate little cheerleader. Sometimes you act like the CEO of our household and your classroom. We welcome your leadership! You always come to the side of someone who is hurt with your big heart and hugs. We are proud of your compassion. We love you so very much!

What's that girl up to?

 


Our morning walks

 Lizzie has my independence, my husband’s patience and my grandmother’s grace.

In her words, I think this is what Lizzie would say:

"I may look and act different, but I am just like you.

I have dreams. I am extraordinary.

I spend my days in therapy for the opportunity to have a life like yours. I have dreams like you. I want to have friends, be a part of a family and a team, go to birthday parties, go to school and get a job.

Believe in me because I am extraordinary.

I beat the odds just by being born. Give me a chance. Give me the chance that every other child has – to accomplish my dreams."

 

Proudly holding her head high. What strong muscles!!



Elizabeth spends two hours per week with a therapist funded through and provided by the state of Oregon. Lori comes to our house and teaches us how to advance Lizzie to the next stage.



This week, we are working to improve several things. First, Lizzie uses her tongue to suck from a bottle instead of her upper and lower lips. Our task is to stimulate her lips and cheeks with massage so that she will identify with them and use them to drink from her bottle.

Second, Lizzie relies more on her stomach muscles to breath than her diaphragm. To help her with this, we apply our hands to her chest and "hold it in." When it works, her breathing slows down and she begins to use her diaphragm.

Lizzie staring into grandma's eyes.
No tracking problems here :)

And finally, sometimes it appears Lizzie isn't tracking objects with her eyes. This last one is a work in progress. Although I've seen her track very well, we have an appointment with Casey Eye Institute to make sure everything is “working.” Then, we will just have to encourage her to use those muscles and respond to moving objects. Gosh, it’s a lot to ask of a three-month-old. But she is right on track.

Lizzie’s therapist even said, “I wish all my babies were advancing the way Lizzie is advancing.”

Again from Lizzie’s perspective:

"I’m working hard for the opportunities given to other children. The question is will you work hard with me? Be my friend and walk with me. Teach me; I will teach you; and we can teach others to accept me for who I am.

Making those around me as happy as I am.

I am smart, strong and loving.



My mom thinks that every new life is a miracle."
 

When a baby with Down syndrome is born, she has beaten the odds just by entering our world. Only one in 800 children is born with Downs each year.

My baby may look different. She may develop in different ways. But she is my child, my gift and she will accomplish her dreams.



Me and big sis snuggling

 Unlike her big sister, Lizzie has slept through the night since she was six weeks old and recently moved into her crib where she is very content. (This is a recipe for disaster as it makes me long for a third baby).

Lizzie loves her playmat, reaching for toys and staring forever at the mirror. She enjoys the swing and would stay put there if we let her, but we have to keep working on our "goals" to close the gap between Lizzie and her peers. And that means therapy, therapy, therapy.



One more message from Lizzie: "Be a part of my purpose for living and we will prevail. We can teach the world that Downs syndrome means beating the odds. I have something to contribute. If you don't believe me, let the pictures tell my story that I can make those around me happy."