It's 2:30pm and I'm in PJs



My toenails are polished with a rainbow of colors. Spit up covers every fiber of my Lucy sweatshirt. And Lizzie is fast asleep after a bath to cleanup our first blowout (in brand new Gymboree clothes, nonetheless).

My "stylist"

Is my house supposed to be clean? Is dinner supposed to be stewing on the stove? (it's about 4pm) If so, I'm woefully behind.

The girls and I had quite a day. I had hopes of maybe a play date at about 10am, followed by a nice long walk with friends in the Bob stroller. None of that happened. In fact, I can hardly describe what happened here today because it doesn't feel like much, yet I'm 100% exhausted.



Then Lizzie had a bath after her first "blowout"



I'm also 100% happy. My girls and I accomplished what felt like nothing, but was really something. We read some books, played beauty salon, strengthened our muscles with tummy time, and then daddy finally came home. Woohoo!!!

To combine this post with more fun stuff. On Saturday, we had our regular gymnastics class. Then on Sunday it snowed! Not much, but for Portland it was enough to build an adorable (1 foot) snowman.

Oh the friends you will meet




The early days. Our playgroup in 2008 when Maddi was born.

  

In the last four days, our friends have delivered delicious meals to our doorstep - starting with gourmet ground chicken stew, mediterranean chicken with cucumber yogurt, and now chicken pot pie. Did I mention the "dangerous" ginger-spiced cookies and oatmeal chocolate chip mini-cookies? All because I have a newborn taking up all my time with feedings, diaper changings, and more.



I am grateful beyond words for the people that I've met through my daughters Madeleine and Elizabeth - whether through playgroups, preschool, and more recently the support network for special needs children.



In early 2008 when Madeleine was born, I joined a moms' group organized through the hospital where we delivered. Moms with kids born in the last couple months were invited to join and meet once per week to talk about the rewards and difficulties of entering motherhood. We shed tears and shared laughter. One mom had twins - I could never understand how she did double what I was doing. Others had babies with colic who cried all day long. Madeleine was pretty easy. She didn't cry much but she did wake upevery two hours (all day long) to feed. We planned outings to the park and indoor play areas. Heck - we even planned meetings at Starbucks just get ourselves and kiddos out of the house.



Some of our adorable playgroup babes at about six months.





Maddi at six-ish months

The moms I met are some of my closest friends today.

Nancy has taught me that life can be beautiful everyday (see her website http://www.littleepicure.com/). Kati has taught me to find the beauty in everyday life (she took this picture of Maddi and is now a pro photographer). Amanda has taught me to celebrate today; tomorrow can be worried about then. She recently moved to an awesome ranch in Colorado that I wish she would blog about. (hint!hint!) There's more - too many to mention. I've learned a million lessons from them all. And it's all because of my daughters that I even know them.

Three years later (in November 2011), I have another daughter - Elizabeth. Oh Elizabeth. You have taught me so much in just eight short weeks. I love my friends before children. I talk to many of them everyday and they have kiddos now too, so we share a very meaningful relationship that has brought us from childhood to parenthood as friends.

The women I've met through Elizabeth have given me a special type of support, strength and faith (so have those previous).  According to these mothers, all children - and not just those with Downs - will be hard work, and will provide moments of joy and sorrow. There is so much truth in this statement. Maybe I shouldn't be so afraid of tomorrow, or of the unknown as it relates to Elizabeth. This is the chance we took with having kids.

The day I learned Lizzie had Downs was among the loneliest day in my life, despite having dozens of family members around me. Ideas raced through my mind that we would be in a "different program" than everyone else - different schools, different sports. I wondered if our friends would still want to be around us. I know - sounds crazy but these are the places a mind goes when something so extraordinary occurs.

Boy were my feelings misguided! Within a couple weeks, we as a family opened our hearts and minds to this new experience. And we were rewarded tremendously. There was an outpouring of support from my friends (with and without children).

We reached out and told a handful of people who put us in touch with some of the most amazing families in Portland - families whose kids have Down Syndrome. Many of these moms have told me, "Thank you for bringing me to Holland, but I think I'll try to get to Italy." What this means is that the diagnosis of Downs does not have to create artificial limitations (sure there are some real limits) but now these individuals diagnosed with Downs have gone on to swim distances only Olympians are capable of, make a business with unique art, and more. And these kiddos have Downs.

Let's celebrate joy and hard work, and having friends who came along because of my children. Thank you Maddi and Elizabeth for opening me up to new worlds of people and ideas.



My daughter, my friend




Maddi and her ice cream
in Temecula, CA.

 

When I was pregnant with Lizzie, my 3-year-old Madeleine and I were picking up my favorite to-go food – Chipotle. As we scooped up our order (three bags of chips for Mrs Preggers), and headed for the door, Madeleine turned to me and said: “Mom, can I carry one of those bags for you?”

I thought – wow, is that my daughter? Or is that my friend? Friends know when you need help and offer it. Three-year-olds are generally a little more self-absorbed and wondering what you’re going to do for them. Madeleine is no ordinary three-year-old.

Every mom will say: “My child is different, she does (fill in the blank here).” And it’s true. All of our kids have their unique qualities that make us proud. Here’s my chance to say that Madeleine is different. Madeleine makes me proud.




Excited together to
welcome baby sister.

 

When I packed our suitcases this morning to leave Palm Desert, she stood by me and said, “Mom can I help you with anything?” Sure, help me figure out how to get this suitcase closed.

Maddi is always asking whether she can help with something, anything. She’ll toss a diaper, sit on the suitcase to make it close, rock Lizzie to sleep and sing her lullabies. When my grandmother wasn’t feeling well yesterday, Maddi was the first to inform all of us. She wasn’t frightened by grandma not being herself. Maddi just wanted to make sure grandma was OK. (She is fine now.)

Maddi and I like to have sushi together. She eats a plateful of rice balls and a dish of edamame while I get my sashimi (that I hope she will someday experiment with). We sit like two friends and have a conversation. Her opening question is usually: “So, what did you do today?” Does that sound familiar to any of you? It’s the first question I usually ask her when I pick up from preschool.

Maddi reminds me to have fun. We played the Hokey-Pokey at Long Beach Airport while waiting for dad to pick up our rental car. People probably stared, but I had fun. We built a pretend fire in a teepee at the Living Desert Palm Springs Zoo.

I have a lot of best friends, first my husband. But Maddi is fast becoming that friend who is my cheerleader; reminding me to have fun; making me laugh at every turn. She's there for me and has an intuition that stuns me, often! Maddi is going to be Lizzie's cheerleader, too.

I know the books and age-old wisdom say that parents should be parents. Our responsibility is not to be friends with our children but to teach them, discipline them, show them boundaries, enable them to be people who can be independent . The ultimate gold-star for us as parents is a successful child who is employed, buying their own food and sheltered somewhere other than the remodeled basement.

Being a parent is sort of like being a consultant. In both cases you are working yourself out of a job. My profession is actually as a consultant; I’m a temporary trainer. I go into a situation, let’s say the Finance Department is not communicating with the money-makers, the Development Department. I’m hired to figure out the problem, solve the problem, then teach them how to avoid the problem in the future. The best case scenario is that the problem is solved and I am no longer needed.

It’s a little different with kids, but the theory holds true.



Our four generations of women.



As parents we teach mobility, sometime around six months. Then we teach them to tie their shoes, dress themselves, do their homework. Before you know it, we’ve taught them to drive and are encouraging some form of higher education so that they will be able to support themselves. By this point, I’ve worked myself out of a job – my child (client) has become independent. And I did it – all on purpose!

However, in the dream of all dreams, that child will come back to you as a friend. She will want your mentorship and love. She may not need you to feed and shelter her, but she will need those hugs. She will need the unconditional love and the belief that only a parent has in their child. That's the friendship that my mom, grandma and I have now.

 I believe in Maddi and I believe in Lizzie. I hope I can instill confidence in them so that they will always know that I believe in them.

Somethings never change

I'm sitting at the dining room table, gazing out the sun-splashed plantation shutters of our condo that overlooks the Rancho Mirage golf course. It's 4pm; time for a little white wine.




Our street in Ranch Mirage (circa 2012)



Golf carts are swerving in-and-out of skinny palm trees; a golfer in knee-length shorts is taking her swing. And my two angels are fast asleep after an afternoon at the pool across the street.



Some places never change. Palm Desert is one of those. Sure it has grown and the people who came through 50 years ago may not recognize the new streets, the rows of new houses that are ever-bigger than the next, and the chain restaurants that have popped up.

Yet the flavor of this place is reminiscent of the 1970s when Palm Desert was officially incorporated. There's an enviable balance of ritz and modesty. Our condo has all the amenities of the 21st century but retains the feeling that it had when I came to Palm Springs as a kid (and my parents as kids too).

Our family had a place at Bermuda Dunes where the Bob Hope Classic was played for many years. My friends and I tooled around in the golf cart, drove up to the clubhouse to order bottomless Shirley Temples, and swam all day long. We sat at my grandma's table eating fresh fruit in the mornings and made my uncles scour the areas behind the drapes for crickets before we'd cross the threshold to teh outdoors.

It was wonderful last year when my Uncle Butch followed a family tradition and played in the Classic as did my grandfather. Here's the then-and-now!



This year, the Classic was renamed to Humana-something.... Anyhow, I guess somethings change. Yet others don't.

In Rancho Mirage, as elsewhere, the pools are too many to count but they aren't huge, aquatic parks that have been updated with Vegas-like cabanas, slides, and wave pools. Their intention is still simple and relaxed. They are average-sized. The lounge chairs don't have padding on them (like they would at a Vegas resort). And of course, we had a ball today with Maddi floating across the pool, going "all the way under," and jumping off the side into my arms. The no frills lifestyle suits us!

This was Lizzie's first trip to the pool - she didn't actually go in of course, but she was there with us! Maddi and I played with the floaties (lucky gal she is to have a mom who dons a swimsuit seven weeks after having a baby).



Yesterday, we brunched at the Desert Willows Country Club/Golf Course, which was one of the first "major" courses in early 2000 that launched another building boom wave in Palm Desert. It was a gorgeous 80 degree day, and a little Road Runner stopped by to say hi while we had breakfast. Of course, I couldn't help myself but get a picture of this matchy-matchy couple in orange tops. They even blended in with the restaurant linens.

Finally, I wanted to through in some evidence of little Elizabeth's development. Here she is raising her head high!! Go Lizzie, go!









 

Palm Desert in January

The snowbirds have it right. Palm Desert is just the required reprieve from snow, rain and cold when the mid-winter blues strike.

After our SoCal merry-go-round with relatives, us ladies headed down to Palm Desert for some fun in the sun. Ladies include my mom, grandma and two daughters.

Palm Desert has a long history for my family.

I remember my grandparents picking me up from school on Friday afternoons to scoot down to the Desert ASAP.

Each January, my grandfather played in the Bob Hope Classic for 20+ years starting in the mid-1960s. And last year, my uncle Butch carried on the family tradition by also playing in the Classic. Fortunately, he played when he did because it was the last year of the "traditional" tournament. This year numerous changes were made to the name, sponsors and other aspects of the event (plus I think it went to a $50K entry fee, yikes)

Anyhow, back to us girls. The temps are mid-80s. Our rental home is a rustic, navajo interior that backs to one of the manicured fairways of Rancho Mirage. Maddi, Lizzie and I are sharing a room with two twin beds and each morning all three of us end up in one bed, while my mom and grandma each have their own king beds. Fine by me - the closer I am to my girls the better.

Mornings are slow. In fact, I don't think we get going until about noon each day - whether we're hanging on the back lanai facing the golf course, changing clothes multiple times because Lizzie has spit up everything she's eaten, or simply using the extra time for extra sleep. It's been truly relaxing.

Once we finally get rolling, it's usually on Maddi's new Barbie bicycle. She's getting the hang of braking and looking straight ahead instead of down at the pedals. With Maddi on her bike, Lizzie gets to ride in the Ergo and generally snuggles in for her early afternoon nap.

We've also done art projects galore! Thanks to all the wonderful Christmas presents, we've made princess bead necklaces, stamp projects, and many masterpieces that we've actually hung on the fridge here :)

Pool time is on tap for tomorrow. We've done a little shopping on El Paseo, but not too much. I found the ultimate Burberry shirt but I'm just not sure Elliott would appreciate seeing the credit card statement. (but the shirt is to die for).

Will I ever accept it?

I'm a positive person.

To me the glass is half full; life is champagne and ponies. 

I  try to do the right thing, I love to forgive, and people tell me I smile a lot.

But I wrote the following in honesty, to be true to the feelings that sometimes sneak in when I least expect them because I want them to go away.

And maybe if I write these down, I can let them go and move on.

When will I accept that my second daughter has Down Syndrome?

When will I stop reliving the day that she was born and thinking she should just go back inside my stomach - be born another day, another baby. I remember lying on the hospital table after delivery, asking whether all her limbs measured properly. To me, her legs looked short, and mother's intuition had haunted me walking into the operating room that day. None of the specialists thought there was a problem, though.

Elizabeth popped out, but then an hour went by before I saw her again. She was in respiratory distress. I was finally wheeled into the nursery to begin making high-level decisions for her care in coordination with my husband. Several nurses and our pediatrician were already there. It was Dr. Smart who looked into my eyes and gently said, I have suspicions your daughter has Down Syndrome. And I quietly responded: "I know."

Mom's always know.

I dried my tears, waved in my family to capture the moment that I dreamed of - a picture of our new family of four and an exchange of gifts between Maddi and Elizabeth (a wind-up stuffed animal from Maddi to Lizzie; a "big sis" charm bracelet from Lizzie to Maddie). Then Lizzie was whisked away in an infant transport via ambulance to another hospital with Elliott. Lizzie went into NICU for 48 hours.

Even with all this, when will I stop questioning the blood tests that confirmed the diagnosis? Maybe there was a mix-up in the lab? Sounds crazy, but I'm waiting for this call... waiting for someone to say it was a giant mistake.

I am falling in love with Elizabeth. We all are. Her snuggles are endless. We swear to you that this little six-week-old scoots her way toward your body in the middle of the morning during cuddle time to be as close as possible. Her demeanor is go-with-the-flow. She doesn't complain. Last night at six-weeks-old, she slept 9 hours! She's super-curious with wide eyes that want to see the world, and she has fast legs that I'm sure will turn her into a runner someday.

I am equally excited for the joy she will bring us and scared of the anticipated hurt that comes with raising a special needs child. Will she comprehend how much I love her? Will she know that we tried everything? Will she know that she is just as good if not better than someone without special needs? Does it matter?

When will I stop searching for the gap between her big toe and others; or the common crease on DS babies' hands (Liz doesn't have this); or flattened facial features? I don't see any of those. As her mommy, maybe I'm blinded to those things.

How will I ever tell Madeleine? Or does Madeleine already know.

Is there going to be a day when I don't lie with her on my belly, skin-to-skin, shedding tear after tear fearing what comes next; or take my steaming showers with tears streaming down my face in order to hide the sadness from the kids; or toss and turn after Liz's 4am feeding - unable to return to sleep because I'm wondering whether someday she will be able to hear, drive, love art, love another, live a life as full as possible.

Why is this so frightening to me? I have moments of clarity and strength that make me feel like Super-Woman, like this is no big deal and I'm up for the task. In fact, I'm not only up for it - I'm asking for it. Let me help this little human being - that is why I wanted to become a mother. Then I have other times when I'm ready to run and hide, let me be the weak link I beg for just a moment please. At least a minute, then I'll muster up my inner strength again that makes me Jenn.

A year ago, the Colorado community where I grew up tragically lost an aquaintance of mine who I barely knew yet admired so dearly. Jenna Gruben was a speech pathologist and worked with special needs children. She was also an ultra-marathoner and among the most modest, inclusive people I've ever met. I often think of her when I'm unsure how to treat someone or how to approach a challenge. I think - what would Jenna have done - and I often come to an answer. It's not as simple as it sounds but it works. Jenna would include anyone. Jenna would laugh, at everyone else and at herself. If I can teach my kids to accept, include and laugh the way Jenna did, I think I'd be a success.

Jenna volunteered at Adams Camp near Steamboat Springs, and someday we may send Lizzie there. It's a special place for special needs kids. Thanks Jenna for leaving a legacy for so many to aspire to.

Down Syndrome: is there a spectrum?

I often get the question: "How severe is Elizabeth's Down Syndrome?"

It's not easy to answer - for many reasons. First, you either have Downs or you don't. Elizabeth has Downs. Second, in the early months Elizabeth will develop just as any other baby, although we have some physical therapy planned that will ensure she doesn't lose any ground.

We are optimistic about Elizabeth's potential. Already, she works on tummy time multiple times per day, even lifting her head back-and-forth with some ease. The milestone charts show her at-par with peers who don't have Downs.

She is a wiggle worm and has strong legs that don't stop moving. She also follows objects (but not always). She looks toward the person entering the room, too. All of these activities are following the milestones of a non-Downs' baby. This video is a little long but at minute 1.58, it shows how Liz is reaching and grasping for objects. She did it several times before my light-bulb went on to capture it in video.

I also wanted to include this picture of sunlight here in the Desert... During her first week of life, Elizabeth's bilirubin levels were low and she bordered on jaundice. Fortunately she wasn't hospitalized but we had to take her in every day including Thanksgiving to ensure the numbers were going the right direction. I remember my friend Lisa in Denver saying, "just put her by the window in direct sunlight. It will help." I looked around and thought... ummm this is Portland, in November. There's absolutely no sunlight around (sorry Lisa, but you come from the state with 300+ days of sunshine). Now we have plenty of sunshine here in Palm Desert. Here's the girls playing outside in PJs on our lanai as I sip coffee and finish up this post.

Elizabeth is reaching milestones very well from my perspective. She smiles, coos, grasps for things on her playmat, and recognizes mom (dad is next).

I'm not trying to deny the fact that my daughter was born with Down's. I'm trying to prove the fact that it merely requires us to proactively "close the gap" created by the extra chromosome, and we intend to do all we can. For a good explanation of Down syndrome, check out: http://en.wikipedia.org/wiki/Down_syndrome.

I was given advice many weeks ago that my objective in Lizzie's development should be finding ways to close the gap between Lizzie and her non-Downs' peers. While Maddi would take initiative herself to play and wiggle and laugh, with Lizzie it's up to us to get her to play, wiggle, and laugh.

.

I may just be taking that advice to seriously as it looks as though I've tuckered out our Lizzie on her playmat.

Predicting long-term development in the early days is difficult to do. And afflicted children fall on a spectrum just as everyone else. There is a wide range of physical, intellectual and emotional development.

We have a lot going for us. Lizzie had no physical abnormalities with her heart, intenstines or brain - this puts us light years ahead for now. We are actively pursuing therapy so that we don't miss a beat. We also told a few select friends about Lizzie's special needs, and those friends have connected us to a support group that has all kinds of resources. It's the Down Sysndrome Network of Oregon. If you want more infomration on Downs itself, go here: http://www.down-syndrome.org/. The most important things we can do are create a loving and stimulating environment. She can be anything she wants. Right now, she just wants to sleep because I think we are over-stimulating her :)