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."

Bittersweet - as painful as it is pleasant

Maddi's second day.

Life is bittersweet.



We fall in love. We bring new lives into this world and watch them grow. We pursue happiness. We treat ourselves to good food. We achieve knowledge and work to better our communities. We travel to foreign places or places we know well. We meet people who impact us without ever knowing it.

Then it comes to an end. Vacations don't last forever. Kids grow up. Jobs come and go. People fall out of love or lose track of each other. New lives brought into our world aren't what we expected. A loved one is lost, forever.

My grandfather Alan died yesterday. My grandmother was diagnosed with brain cancer two weeks ago. My daughter was born with Down syndrome three months ago.

I'm numb.

Since when did someone think that I could handle all this at once? I look back on two of my recent blog posts - first the Bible's Corinthians passage that says you are given what you can handle. I'm calling BS on that one - at least for now.

The other is the Dr. Seuss quote - "don't cry because it's over, be glad it ever happened." OK. I feel good about this one. My grandfather just turned 94. He lived an incredible life of accomplishment - both in his profession and family. He implemented formulaic approaches to predicting stock trends and helped clients achieve their goals.

Grandpa Alan with cousin Abby

He lived. He loved. He imparted wisdom and grace to all those he met.

 

The moments we spent were mostly around the dinner table listening to lore of the old days. His father was an early co-founder of CBS but later achieved success in other professions as his father had a small falling out with the other founders. Many years later, Grandpa Alan attended a CBS shareholder meeting and made an infamous ruckus about the split between the co-founders. Alan went on to become a stock broker for a boutique firm.

While not the salesman, he had other qualities. Genius qualities. He used newly researched formulas to chart stock activity, such as trade volume, to predict future activity. It was innovative; he was modest.

How sweet it is that my life included him. How bitter are my feelings that he has departed.

Four generations at Salty's on the River

My grandmother has brain cancer. There, I said it. And I hate it. My best friend, my mentor, my fashion consultant - she is unhealthy and it hurts. What happened? How did life take turn after turn in these last few months? The side effects of grandma's condition impact her memory. So I wrote a few things down.



Remember this:

• Taste-testing Sundae desserts throughout Scandinavia
• Attending Maddi's first ballet recital
• Making fruit parfaits (that as we got older turned into fruit smoothies)
• Maternity shopping in San Francisco
• Sipping champagne in the hot tub in Carmel on our "college tour"
• Letting me drive your Jag after your eye appointment when I was 14
• Talking on the phone every morning when I drove from Boulder to Denver to work at the AP
• Decorating my first apartment in Boulder in a blizzard
• Continuing to shop on Pearl Street in Boulder despite tornado and thunderstorm sirens and ugly, dark clouds. We thought taking shelter inside the stores was pretty clever.

How sweet it is that we shared these moments. How bitter it is that you do not feel well.


Lizzie's arrival. And our joy!



My second daughter has Downs syndrome. The day she was born, I interpreted it as a death sentence. I knew nothing about Downs. Would she talk? Would she walk? How limiting would this diagnosis be? Why me? Why my daughter?

 

I know why now. Because I like adventure. I don't do ordinary. This is actually an opportunity. I've hiked 14K mountains in Colorado, run the Honolulu marathon, watched the Tour De France from Alp D'Huez, entered Kosovo during the 1999 war to be a reporter, stayed out all night in New York City until we saw the paper delivery trucks, backpacked in Europe alone, spent New Years on the Charles Bridge with my husband.

Lizzie is an adventure. She's an opportunity.

How sweet are her smiles, coos and cuddles. The triumph is so significant when she lifts her head or rolls over. Each milestone will be an adventure. Each missed milestone will bring pain, though. What happens if she struggles with speech? What about the people who don't accept her because she is different?

How sweet it is that I have this opportunity. How bitter it is that others may not see it the same way.

Falling in love



Our first dance

 Do you remember falling in love?

I mean real love, forever love.

I do.

Vividly.

The first time I laid eyes on Elliott he was making a presentation about marketing to my MBA class.

I fell in love - hard.

He was dressed in nice slacks and a tucked in, button-down shirt (in a class where most kids were unkempt, showing up in jeans or better yet sweat pants). I don't know what he was talking about. He was just cute, put-together and could speak to a group of 100 kids - something that at that time I could never fathom without stuttering, sweating, and shaking palms.

 

He was confident. He knew what he was talking about. He had real plans to go somewhere and be someone. From that five minute talk he gave to us, I could tell Elliott had drive and ambition. And I admire(d) that.

 

Ell with his two ladies, Jenn and Susan



In MBA school, it's all about networking. We had "Thursday Night Outs" or TNO. That's where our friendship evolved over a pint (or two) of beer at pizza shops and McMenamin's in Salem.



Then I tried to set him up with Susan, who would later become my maid of honor, because I actually had a long-distance boyfriend at the time and I wanted Elliott off the market. He was too much of a temptation. Susan fortunately had other plans.

 

Then, on our first date Ell picked me up in the worst clunker of a car (if you could call it that). It was a 1984 (almost 20 years old, folks) Honda Accord and you had to step on the brakes at the same time with your foot on the gas so that the lights would stay on at night. I think the car cost him all of $400.



I still knew he was soulmate, despite the ugly brown car whose windows didn't work.



One of those MBA parties



I remember during school that I would coordinate the need to visit my locker for books at the same time he would be there to get his books. I remember sitting at our first Oregon Ducks football game, not in the stadium seats, but in the beer tent talking throughout the entire game. And no, I don't remember who the Ducks played.



A couple days after the Ducks game it was official. We were "dating." I remember telling my girlfriends on one of our long distance runs through Minto Brown park in Salem.

Two weeks after meeting, I persuaded him to come to my sister's wedding in Malibu where he would meet every single member of my family. He said yes.



Two months later, we planned a trip to Eastern Europe and backpacked for two weeks over New Years, spending the best New Years of my life on the Charles Bridge in Czech Republic with a $2 bottle of champagne, plastic cups, and several friends from our B-school.



Fun in Holland



The next summer, I complained and complained that I was ready to get married, and he finally proposed in fall 2005.

We were married in fall 2006.

Of course, I was ready for kids immediately!

Along came Maddi.



With Maddi

Then Lizzie.

With Lizzie



So what does our love mean to me?

Acceptance. Sacrifice. Passion.

We accept each other for our strengths and weaknesses. I tend to react quickly while Elliott absorbs things and thoroughly reflects (good qualities for a soon-to-be lawyer).

I sacrificed the last four years without his company so that he could pursue a dream to become an attorney. He sacrifices every day time with me and his children so that he can be the best father, husband and provider for his family.

We are passionate about each other but even more so about life together and our children. Sure that passion gets us in trouble. We care so much about so many things. That's where acceptance comes back in the picture. It's no walk in the park. Sharing your life with someone so special comes with all these things. The rewards of being together are awesome.

We've traveled to beautiful places together, celebrated holidays, felt pain and joy. Together we are there for each other, no matter what.

The circle of life: one ICU to the next

Lizzie's first days spent in ICU



Me and Lizzie in ICU



Dr Seuss said: "Don't cry because it's over, be glad it happened."

Bye-bye maternity leave; hello tax season.

I don't know how else to start this post but to say that the bookends of my maternity leave were spent in ICU, and I've learned more in recent weeks than in my entire 34 years of life.

ICU was first for my newborn, then for my grandmother.



Maternity leave ended yesterday, and my newborn is exactly 11 weeks old, just one week shy of the legal length of maternity leave (12 weeks in the United States). With my first daughter, I took six months off. My leaves were drastically different. 



My early days with Madeleine (now 4 years old), were spent with new mommy friends at the park or the mall. We picnicked in the Rhododendron Gardens, got fit going to Stroller Strides, and had playdates, which were more like mom-dates since none of our kids were old enough to move around, let alone play.



Maternity leave with Maddi at Music Together



Then came Elizabeth (now 2.5 months old), born with Downs syndrome and a difficult delivery at best. The first week Lizzie was in ICU, and I recovered in the hospital. Week two was spent at doctors' appointments everyday to control her jaundice and stoke her palate to begin eating. Week three brought appointments with pediatric radiology who told us her brain had not swelled as originally thought, and audiology who continued to be unable to get Lizzie's left ear to pass the test.



Forget picnics in the park.



Week three also brought me to the end of my rope. I discovered I was shedding enough tears to fill the Atlantic Ocean. I found help in support groups, church and my doctor.



Weeks four, five and six brought the holidays, and we were doted on like never before. Read these posts to find out what we did: Palm Desert and Together with Family. Those were great weeks. I discovered I had support far and wide. We have a baby with Downs and it's no big deal. With the reassurance from my family and close friends, life began to fall into place.



Lizzie's final audiology appointment when we learned her hearing is a-OK.



The next couple weeks also mirrored the maternity leave I had with Madeleine. I took my first real daytime nap, watched romantic comedies on Apple TV and cooked meals to freeze for my return to work. We started Lizzie's physical therapy, got outside and walked in the fresh air, and hit up downtown tourist spots while my sister visited. Now that's what I'm talking about!

Then weeks 10 and 11 dropped. And I mean dropped like a bomb.

My grandmother was at the house in the Desert and fell. Doctors did a CT scan and found a brain tumor. The entire family (including me and my girls from Portland) rushed to her bedside at Eisenhower Medical Center in Palm Springs to once again discuss high-level medical care issues (as I did with Lizzie in her early days). Within a week, grandma was flown to Portland's OHSU in a lear jet chartered by Angel Flight and the tumor surgerically removed. The diagnosis of cancer was made and treatment starts in three weeks.

My final week of maternity leave was spent at OHSU in neurosurgery ICU. Grandma is now home and my mom has moved in to assist with her recovery, including numerous doctor visits, resume tests of her blood sugar and provide general support.

Sound familiar? Maybe like the first days of Lizzie's birth? The zillion tests and doctors appointments.

And again, family and friends came out in droves to support us. Dearest Kati gave my mom a lift from the airport, Matt and Nancy traegered a roast beef for our homecoming dinner, flowers fill every open space of my grandma's apartment. Aly and Stewart had food delivered to our doorstep to "lighten the load." Bless these people. While I never want them to undergo the challenges we have faced, I am aching for the day to give them the strength to stand up on their two feet as they did for me and for my family.



Me and my best friend at Maddi's first dance recital.

Grandma will recover with a lot of hard work through chemo and radiation. Young Elizabeth with join her peers with a lot of hard work in physical and speech therapy. The two of them together will enrich our family and teach us many things.

I've already learned more in the last 11 weeks of maternity leave then in my entire life of school (including grad school), or from any book or work experience.

It's that my inspiration (my grandma) is brave and courageous. It's that my first daughter has an enviable innocence as she cares for grandma and Lizzie. Her first words to grandma Patti on her hospital bed after brain surgery were: "You look pretty grandma." It's that my second daughter will bring us joy and enrichment beyond what we can predict today.



The weeks to come will be challenging, but I'm back at work now where there is regimen and routine, which I like. In the face of 11 difficult weeks, we are a stronger family and we've learned just how important family and friends and community can be.



Going forward in faith

"No temptation (or test) has overtaken you except what is common to mankind. And God is faithful; he will not let you be tested beyond what you can bear. But when you are tempted/tested, he will also provide a way out so that you can endure it." (Corinthians 10:13)



Lizzie's first church service held by Aunt Lillian

Today marks the first day I've been to a church service (or synagogue) in at least a decade. My sister is here from California and was my "guide." We found Southlake Church and the preceding passage from Corinthians was shared this morning. Wow - what a way to resume my commitment to faith but with a message that reminds me that my latest life tests are not beyond me.

When I told my dad about Lizzie's Down syndrome diagnosis, he had two key pieces of advice: find a support network and find a church. Support network? Check. That was the easy part.

Find a church? Not so fast.



Lovin' the Oregon Coast at Newport



See, I come from a mixed-faith family. It's complicated but the short version goes something like this. My mom and my dad were born into non-denominational Christian families and had me. So I'm Christian, right? Not so fast.  



They divorced, my mom married a Jewish man, converted herself and me, sent me to Hebrew school and camp for 12 years, yet we celebrated every Jewish and Christian holiday ever since. My mom is a converted Jew; my dad and everyone else is some form of Christian. For years, I've simply been both (if that makes sense).



Me and Maddi making cupcakes
for Pinkalicious



Now I'm married with two daughters. Elliott's religious background isn't as "interfaith." He attended a variety of non-denominational Christian churches. And like me, hasn't been to church for years. We didn't even get married in a church.

 

But lately, something is missing. We have achieved a nice balance between our personal and professional commitments, like building a family, excelling in our careers and maintaining our health. But what about our commitment to faith? And what about imparting this on our children? We stalled for two reasons: our other commitments took priority and our "interfaith" upbringings caused an indecisiveness about what's right for our family unit.

Then a series of events occurred in our life demanding us to find and establish our commitment to faith.

First, Madeleine. When she asked "who is God?" one morning at our local coffee shop, we knew it was time to figure something out. Second, Elizabeth. When we learned she had Downs syndrome, we (maybe just I) thought God had given me more than I could handle. According to Corinthians, that's not the case. Somehow, we will endure. The plan is drawn up; we just don't know it yet. And it's not more than I can handle. I have to believe this is the case.

It's going to take me some time to re-establish this commitment to faith but I'm off to a good start and look forward to more lessons at Southlake Church.

I am going to walk forward in faith.

  

Things to do in Portland

It rained. It poured. It was a typical Portland day. And with my little sister in town from Southern California, we made sure to hit up the typical Portland hotspots.

The day started with a soppy, wet walk to the local track, which I try to do a few times a week in our hilly southwest neighborhood. Lizzie snuggled right into my chest while riding in the Ergo. This put her to sleep quickly and when we returned home, she had the most beautiful rosy red cheeks.

Lil sis Lillian and I picked up Maddi at preschool at noon, then headed downtown to Voodoo Doughnut. I can't quite figure out why people rave about this rundown donut house one block from Burnside Avenue's homeless shelters and Union Gospel Mission. There's some interesting characters in this part of town. But even more interesting are the donuts they serve: maple-bacon bars, the Voodoo Doll, and dozens of different types of cereal encrusted sugar donuts.

We continued in the pouring rain over to Powells Books, an independent bookstore that spans an entire city block and has everything you'd ever want to read and more!

Of course, little Lizzie was silent and complicit all day long until we got into Powells and she was starving. Inside the quietness of the bookstore was my screaming, hollering baby, begging for food.

Just as soon as we got Lizzie settled, we must have read a dozen books: The Lorax, the Monster at the End of this Book, Minnie Mouse Becomes a Doctor, and more.

We left with a handful of paperback, $3.99 books.

A perfect Portland day, especially with my little sister to help out!

PS - Yes, Maddi is wearing pajamas in downtown Portland. It was PJ day at preschool!