As Long As It's Healthy, A 77 Year Old Pregnancy

As I rummaged through the area under the sink, my mom stood next to me nervously fidgeting with her hands. I handed her the Dixie cup and a few moments later we saw two little lines. Pregnant! I cried tears of joy and amazement “I cannot believe I get to experience this with you, mom!” She gently rubbed her belly and said “I think it’s a boy, I can tell by how I feel.” We were giddy and excited like we were sisters. I was then outside and in the distance was a sparkling water tower with bright orange pumpkins at the top. I made a mental note to take photos of the kids there sometime. It was the golden hour and the sun was shining beautifully and the light was perfect. I pulled my mom close to me and we googled “77 year old pregnancy risks”.  The next thing I remember is being startled awake by the sound of my alarm clock. I smiled to myself and thought “oh man I can’t wait to tell my mom about this one”.

That morning I did what I do every day, I called my mom. “Mom, I just had a dream you were pregnant!” She giggled and said “I better go to the casino, maybe it means I’ll meet a guy!” She always makes me laugh. So then we had a whole conversation about stories of women past age 60 having babies, I reminded her to be careful. “I wonder what a 77 year old’s risk of having a Down syndrome pregnancy would be?” we giggled some more. As I explained the random pumpkins and the water tower, she said “OK you know what is weird, I’ve had a reoccurring dream and fear since I was a little girl of water towers.” Her brothers would simply walk by her and say “water tower” and she would cry. Dreams sure are trippy, aren’t they? I wonder what it all means.

Me and my mama

I can tell you exactly why I’ve been dreaming about babies and pregnancy though, it seems that everyone at work is pregnant. The two girls that sit next to me are pregnant and have the cutest little baby bumps. We talk about babies every day. I was talking to one of the girls right before her gender ultrasound. I said “so do you think you’ll have a little sis for your daughter or a baby bro?” She looked at me and said “I don’t care, as long as it’s healthy”. Then I could see her body language shift. She said “but, I mean, if it’s not healthy that is OK too...” I could tell she had one of those “oh crap” moments, like maybe she said the wrong thing to me.

This conversation brought me back to when I was pregnant with Ellie. Every night Jesse and I have a routine of going upstairs and kissing the kids goodnight before we go to sleep. Every single night during my pregnancy with her, I would go kiss my boys and then rub my belly and say a prayer “please Lord bless this baby, and please make sure she is healthy”. I had a rough time throughout my pregnancy and always worried that she wasn’t going to make it. I had bleeding for weeks, gestational diabetes, thyroid problems, and she was in an odd position in the womb to which doctors had no explanation.

My Ellie Belly

After the birth of our girl, I remember crying to my mom. Through tears I said “but mom I prayed every night that she would be healthy.” She looked me straight in the face and said “and she is, honey.”

Ellie with Grandma

I know once you join the Down syndrome club, and you hear other moms saying how all they care about is that their little one is healthy, it can hurt a little. Like they don’t want a baby like yours. But I’ve come to realize that there is nothing wrong with hoping your baby is healthy. One thing we all have in common is that we don’t want our little ones to hurt or suffer. We are protective and love these little beings more than life itself. So “as long as it’s healthy” doesn’t bother me anymore. Because I prayed that our girl was healthy too, and she is, honey. 

Ellie and I

This week's song was one that popped up yesterday on Pandora, and I immediately sent it to my brothers. Yesterday would have been my handsome dad's 80th birthday, so of course I always think he's saying hello by sending me beautiful music to listen to. :)

Timshel - Mumford and Sons

Welcome to the Club

I've been watching Season 2 of "Born This Way" on A&E, a reality show about young adults with Down syndrome. It follows their everyday lives, showing their triumphs as well as struggles. Every single episode I shed a tear, whether it's when Megan expresses her desire to have babies, when Elena and her mom go head to head, or the love Cristina and her fiance' have for each other. I love Sean's parent's humor and they remind me of Jesse and I, plus my boys are constantly singing "Shake Your Booty" by cast member John. I can't help but look forward to my future with Ellie. I'm learning so much from the parents who have walked this path before me. I'm also realizing I have so much more to look forward to. 

On a recent episode, Elena's mom was talking to the other parents about how hard it has been dealing with Elena's fragile emotional state. They comforted her, reassuring her that they are all there to help her through it. Then Rachel's dad said something that really hit home for me, and the tears started flowing. He talked about being in "the club". It is so true. We are in a club we never dreamed we would be in (unless you are Jesse and I and you literally dream your daughter with Down syndrome into reality!) And now I can't imagine not being in this club. It's something amazing that is for sure.

Just a little over a week ago I hosted a mom's lunch for local families. The Down Syndrome Network Oregon graciously sponsored the event and we had a huge turnout. There was about 150 people including the kids, all at my house! It was amazing! There were children from 1 month old all the way up to 15 years old. I was in awe watching the moms connecting and sharing their stories. All of the kids got along as if they had been playing together for years. It was a "heart is overflowing" moment for me. I also have to make a shout out to my mother-in-law Julie, my mom, and my best friends Jos and Allyn for helping me put the event together! I couldn't have done it without their help. Also, Jos took over 200 photos for me. Here are a few from the day, I had a hard time narrowing it down so I apologize in advance for the photo overload!

Helper Extraordinaires! My Mama, My Bestie, My Mama-in-Law

Ellie and her new buds :)

Babies galore!

Iris loving the pool!

Two beautiful girls.

Paula, one half of the amazing DSNO founder duo!

Brothers.

Little Miss Sunshine.

Cuties!

One of my closest local mama friends and her beautiful family

I am leaving Friday morning for a two night trip to Dallas, Texas to see over 100 of my closest friends. That sounds funny doesn't it? But it's true. We are all moms to children with Down syndrome. We have been each other's sounding board through surgeries, struggles, delays, successes, GI issues (some of you know more about this than you'd like), and navigating services, inclusion and more. This event is put on through the DSDN and is called the Rockin' Mom Retreat. We will have 3 days and two nights full of laughs, tears and relaxation. The goal of the weekend is for the moms to connect, inspire, and recharge. To say I'm excited would be an understatement. Here's a few photos from last year's event in Minneapolis, Minnesota.

1st Rockin' Mom Retreat - 2015 - Minneapolis, MN

Elevator fun!

The late night crew!

There for each other. Always.

This is our tribe. As our children grow, we will have each other through every  milestone, whether locally connected or connected virtually. The future isn't scary or lonely when you have others who get it. Our kids may end up living together someday, like Steven and Sean from Born This Way. Speaking of Sean I get to meet his Rockin' Mom this weekend in Dallas! And I wonder who will be in the first "Rockin' Wedding", I have my sights on Mason and Ellie for that title. 

I don't know what Ellie's future holds but I do know as her mom I am not alone, and never will be. How is it that a little extra chromosome can bring together people who would have otherwise never met? I also can't imagine not having my now-best friend Jos. Our girls brought us together and I'm forever grateful for that. 

Sweaty BFF's but having fun!

Have you found your people yet? The first step would be reaching out to your local group for face-to-face support. If you click this link, it will show you the organization closest to you. We have the DSNO and NWDSA local to us here in Oregon, both are amazing organizations that provide so many resources to families. And if you are new mama, "welcome to the club", you will love it here I promise. When you are ready, please find us on Facebook at the DSDN and join one of our many private support groups. And remember, you've got this, and we've got you.

My song for this week is one that reminds me of my fellow Rockin' Moms. I love you ladies so much and can't wait to see many of you on Friday!

Count on Me - Bruno Mars

#sharethelove

You know that old saying "it takes a village to raise a child?" I never fully understood the meaning behind it until I joined the Rockin' Mom groups through the Down Syndrome Diagnosis Network. There is such comfort in knowing I can navigate through this sometimes uncertain journey, and that I will always have these moms to lean on. We will always have each other, through thick and thin. Our kids are growing up together and they too will have each other. It's a connection unlike anything I've ever experienced.

We have decided to raise funds to help our amazing DSDN families grow and thrive. The DSDN shepherds kids from 0 to age 3, and provides support to the families of these children through the #sharethelove Rockin' Family Fund. We are one big rockin' family.

Who are these rockin' families? Please watch and find out in the beautiful video below:

#SHARETHELOVE Video

With only one week left in our fundraiser we are hopeful that we can reach our goal of $10,000! Please help us get there by clicking this link and donating, every single dollar helps. If you want to read a really thoughtful post about it, my co-advisory board member and co-video planner Jisun explains it much more eloquently than I can here. 

We thought it was important for you to know our kids and to have a glimpse into our lives. Jisun and I reached out to our Rockin' Moms for photos, and we received hundreds of gorgeous submissions. My brother Joey generously donated his video creating services. After many long nights, multiple messages, lots of editing and rearranging, he had to gently tell us that if he used every photo we received that the video would run for 30 minutes! It was painstaking to narrow it down into a 5 minute video. Below are some examples of the stunning images we received.

Please help us fulfill our mission and give our Rockin’ Families the support, love, courage, and community they need. Are you wondering where the funds go? Your donations will enable us to help our families in the following ways:

1. Welcome
When a pregnant or new mother first hears the words "your baby has Down syndrome", it can be a time full of uncertainty for what the future holds. DSDN is there to welcome these new parents into our Rockin' Mom support groups. We estimate that our Rockin' groups will grow by 500-600 moms this year alone! Having others who understand what you are going through is invaluable.

The Rockin' Family Fund will enable us to send a small gift to each new mom and child that join our network, ensuring that every family is able to see the celebration in this new life.

2. Support

Sometimes our Rockin' kids are sick. We have some children who require heart surgery, long hospital stays and encounter other medical concerns. It is such an amazing feeling to be able to brighten a family's day with hope when facing medical uncertainty.

The Rockin' Family Fund will help us send care packages to families facing medical issues and extended hospital stays.

3. Comfort 

Sadly, we have lost a few of our babies in our DSDN Rockin' Family. It is heartbreaking to see the announcement when a child passes away. It is important for us to support these families through the hardest time of their life. Late last year we began sending memorial wind chimes to families grieving the loss of a child. Every time one is sent out, our hearts break knowing what that family is facing. The Rockin' Family rallies around these parents and we come together to mourn the loss. We have also created a loss support group so these families will have each other to lean on in the days ahead.

The Rockin' Family Fund will help us continue to send a personalized memorial wind chime to families that experience a loss.

4. Empower

Many times upon learning of a Down syndrome diagnosis, families will have a thirst to gather as much information as possible. There are many local and national opportunities for education through conferences, retreats and classes. But sometimes there are financial limitations keeping families from attending.

The Rockin' Family Fund will enable us to empower families to seek out information and resources to best support their family.

Can you help us #sharethelove? Please donate today and offer the gift of hope to these families.

Fate Smiled

Oooh, I believe, fate smiled
And destiny laughed as you came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience, and with faith
She'll make her way...

I will never forget the day Natalie Merchant's song "Wonder" played in my kitchen. It had only been a week or so since Ellie was born when I really heard this song for the first time, with new ears. I almost fell to my knees listening to the lyrics and I truly believed that I was meant to hear that song, at that very moment. 

Today as I was brushing Ellie's hair into two little pig tails I couldn't help but think back to a little over 6 years ago. I was pregnant with Luke and it was when Jesse and I both had the dreams. The dreams about the little girl who was ours, with almond eyes and an extra chromosome. I will never forget those two pig tails and sweet smile. I can't believe that because of these dreams we made the decision to be done having children- as if to not "risk it". I had no idea of the little soul that was waiting up there for us. Waiting for that right moment to come down and be ours, to rock our world.

I am a true believer in serendipity, fate, and destiny. How could I not be? It was not a coincidence that Jesse and I both had dreams about Ellie. I look at the past two years, and the journey our life has taken. I think about the people I am meeting along the way, it doesn't feel like just any other ordinary connection. I look at my existing relationships and how they are deepening to a whole new level. There's something more to it, something extraordinary that is hard to put into words.

Today as I looked at my daughter; a sassy, opinionated, smart, beautiful 2 year old little girl, I realize she is exactly who she is meant to be. She completes our party of five and I wouldn't have it any other way. I wouldn't change her for the entire world. And I'm confident that she'll make her way.

That face!

Snuggles from her big brother Luke

But I want it now!

I had to include some drama queen photos!

Brotherly lovin'

My girl

Wonder - Natalie Merchant

I Missed My Flight and So I Stayed

I haven't posted in a couple of months, time seems to be slipping right through my fingers. This is going to be another pictorial recap of September and October. We have had a whirlwind of a time I tell ya, with the Buddy Walk, a once in a lifetime family vacation to Hawaii, Halloween, Ellie whistling like crazy and her health update! And she's going to be 2 years old in two months!

The boys started school in September, we have a Kindergartener and 2nd grader now. Luke rocked his purple shirt, tie, and purple Nikes. I still remember to this day the way I felt when I started Kindergarten. Horrible butterflies and a sick feeling in my stomach. A feeling I still get to this day when I have to do something new that makes me uncomfortable. Luke on the other hand is nothing like me in that way, he was excited for his first day.

We had Ellie's Buddy Walk, it was amazing. We had a big group of walkers and it was an absolutely beautiful day. I had set a goal to raise $1,000 for the Down Syndrome Network of Oregon. We ended up tripling it and we raised over $3,000! I couldn't believe the outpouring of support from my coworkers, family, friends, even some of my new online friends that I have yet to meet in person. We are so grateful. Thank you to those who donated and joined us in our walk. It means the world to us.

In September I had a little mom's get together at my house to talk about my appointment with our Naturopath Dr. Peirson. Having local moms to talk to in person is so important. The kids all play so well together. We spent most of the time talking about our stories and how we received the Ds diagnosis. There's something I have noticed in many of the stories I hear. I've heard stories about years of fertility struggles and then all of the sudden they were pregnant with their child with Down syndrome. Or they weren't expecting to have anymore children and "surprise!!" there they were! Or the dream thing, one of the local moms I chatted with also had a dream of their child before they were born. There's just a little shred of magic in these kid's conception and I am always left in awe. I wonder what that's all about... hmmm...

Speaking of my mom support, I am planning to meet many of my online rockin' moms in 2015. I'm so excited I can hardly see straight. I'll be going to a conference in June and I'm hoping to go to a retreat in September. I've made so many lifelong friends thanks to Ellie and I'm so grateful.

A couple of fun things that have happened recently, I had another blog posted on The Mighty, I sure love that inspirational site!! It was the one where I wrote about my big bro Danny and Uncle Dave.

The Mighty also made a shout out for parents of children with Down syndrome to share their thoughts about raising a child with Ds and somehow my quote was picked. How cool is that? These 24 People Have Advice For Any Parent Who Just Received a Down Syndrome Diagnosis.

I also entered Ellie in a photo contest for an awesome site called Stand Up For Downs. They use humor and comedy to raise money, awareness, and get people laughing. I can so appreciate their mission. They had a funny picture contest, and we could have won $1,000 to the charity of our choice! I was hoping I could raise funds for our non-profit (the DSDN) and we were SO CLOSE at 5^th place!! The winner totally deserved the #1 spot, you have to see the photo that won it's hilarious. Here’s the picture I submitted, it makes me giggle:

October was also Down Syndrome Awareness Month. I did this little photo of Ellie to celebrate. I actually printed this at Costco to hang in her room. Her face just kills me, she's so darn kissable!

We also went on a trip to Hawaii to celebrate Jesse’s Uncle Jack. He turned 60, and he is by far one of the coolest dudes I know. It was a big group of us, my in-laws, Jesse’s Grammy, along with our family that moved to Vietnam last year. It was soooo relaxing and so wonderful to watch the cousins together again. The boys were so excited for their first time on an airplane. Ellie traveled like a champ and made friends everywhere we went. We drank lots of mai tais and ate really good food thanks to the cooking skills of my sis-in-law Dani. There was lots of swimming, sunning, and giggling. This was a trip we will remember forever.

As we were exploring the island I kept thinking about the people that live there. Everyone seems so relaxed and friendly, it has such a laid-back vibe. I wondered what do they do for a living here? How much does it cost to buy a home? Could we pick up and leave and come live here and never go back? “I WISH!” Jess and I kept saying. When we were sitting in Uncle Jack’s backyard (I mean back sand.. on the ocean, not really a yard)… I told him how I completely get why he lives there. It's paradise! He then told me that 28 years ago, he was 32 years old and living in Oregon. He went to Hawaii to visit, and upon returning home had missed his flight. Oops. “So I stayed” he said. Just like that. He never looked back. He just decided to stay in Hawaii and he’s lived there ever since. See? Dude.

Uncle Jack with his great nieces and nephews in his backyard :)

He’s awesome and it was so great to get to know him in his element since we usually only see Uncle Jack when he's in Oregon visiting. He took the kids for rides in his yellow car, gave lots of noogies, and snuggled Ellie up a ton. Will told me today that Uncle Jack went 90 miles an hour in that yellow car and that they almost hit a wild turkey. I highly doubt it was that fast, but in a 7 year old's mind it's something he will never forget. I’m so grateful we could all go to Hawaii together to celebrate this awesome guy. I took over 1000 photos again, and surely my computer is going to explode from being over capacity at some point. Here are some of my faves:

During our vacation I also ditched all of Ellie’s supplements, her sure steps (braces for her ankles), her hip helpers (to keep her froggy legs aligned). It was awesome (I said that in a singing opera voice in my head)… I gave her thyroid meds every day but that’s it. And you know what? I felt like she was stronger and progressing better than ever after that. Why does that always happen?? She's now back on everything, we are following PT’s rules as far as wearing all of her therapy gear, and we are back to our routine but damn it felt good to be a rebel! And she loved it too.

Halloween started off kind of awkward this year. You see, every Halloween since the boys were tiny we would trick or treat in our little town with the cousins, but that isn't possible now that they live in Vietnam. So last year we realized we needed to find a new tradition, and we went with our best friends and had a blast in a new neighborhood trick or treating. Well they moved to Texas in August, so that tradition ended too. Can you sense the self-pity?? Wah waaaah. I feel like everyone we love is moving away from us, and I don't like it! So I called our OTHER best friends and invited ourselves to hang out with them. I have no shame. Luckily they said it was fine! It was a lot of fun, the kids scored tons of candy, and it was fun to catch up. Jen, you guys better not move away too!

Our boys together

Ellie was Minnie Mouse, Will was a dead skater boy, and Luke was a zombie. I found out how to do the make-up from watching youtube and hounding my friend on facebook who is a zombie face make-up master (thank you Michelle!!!!) It was easy and the boys LOVED it. 

Here’s a quick how-to: You will need liquid latex, which you can buy from the Halloween store or in my case Amazon because I have a sick addiction to buying stuff on there (free shipping in 2 days? Count me in!)… anyhoo, paint on a thin layer of latex, put a piece of tissue paper over it, paint another layer of latex over that and let it dry. Use tweezers and pull the paper and rip it. Then you just paint over it with cheap face paint you can get at the Halloween section of any store. Wah-lah! You have scabby peeling sores on your face! The boys said it was their most favorite costumes ever. And I had fun doing it!

OH, and THIS! This happened:

Brag alert! This is a drawing by my niece Karley, she is 15. I can't tell you how many times Jesse and I, as well as the boys, have studied this dude's face. She drew this with pencil on a piece of copy paper. I still can't believe it, I can't tell you how absolutely proud I am of her. She amazes the hell out of me. She is the most talented artist I know and I can't wait to see what her future holds.

OK, Ellie’s health stuff.  She is now on thyroid medicine. She had 3 teeth come through after being on the meds for 7 days, 2 top molars and one of her front teeth- NO JOKE. Her hair is shinier and growing faster somehow, her tone is better. She now pulls up to stand and goes from the couch to the table with no fear. It took her forever to get to this point but once starting the meds I kid you not, she is a confident little stander-upper now! Everyone noticed the huge change in her, my mama-in-law, my mom, our babysitter, everyone! Walking is still a ways away, but I feel like we are heading in the right direction. I am now giving her the meds two times a day based on her latest blood work. I truly believe this is what she needs and it feels right. Although the Pharmacist at Walgreens made a snide comment "WOW, you have your child on thyroid medicine ALREADY? Isn't she a little young for that?" She's lucky there was a window in between us because I wanted to throat punch her. OK not really. Ok well maybe just a little bit. :)

I have been waiting months for Ellie to say “mama”. One of her first words was "dada" and in the past year I've been trying to get her to say mama, but she will look at me with a twinkle in her eye and say "dada". Then it finally happened, but it wasn't the way I expected. See the below video. And note this was a month ago and she still says it this way. Yep that’s my girl... she's such a stinker. 
Ellie Finally Says Mama

Her other awesome new trick is her whistling. People freak out over it. Her OT said “in all my years working with kids I’ve never had a child able to whistle at 20 months old!” I think it must be genetic. My dad was the best whistler ever, and I whistle every day. And hey it’s good oral motor therapy if you ask me!
See clip:
Ellie Whistling

I also want to bring up our DSDN Holiday Card Campaign. We are making a shout out to families who have children with Down syndrome to send a holiday card to their medical providers (NICU Team, Pediatrician, OB's Office, etc). Please share your beautiful families far and wide as a reminder how loved our little ones are. 

Here are a few more photos from the past couple of months.

Ellie's left eye is turning green and you can really see the difference in this pic. 

Yes, yes you are my girl.

One of my all time favorite pictures of her!

I made this shirt for sis, I think it's so cute on her. We also sent one to Ellie's boyfriend Mason, how adorable is he??

Every once in a while I will have a shirt idea and have found Spreadshirt to be really great in regards to quality, ease of designing, and quick shipping too. This is also where I made the boy's shirts for our first World Down Syndrome Day. Luke wears Will's old one now and it's getting too small. I think I'll reorder some bigger sizes soon because they love to wear their "sissy shirts".

Here's my little shop with the different shirts I've come up with: Spreadshirt Shop I highly recommend them if you have an idea for a shirt!!

I love this photo, look at how small my babies are! Oh my heart!

Well that wraps it up for now. We are looking forward to hosting Thanksgiving at our house again, and then Christmas is right around the corner and Ellie's birthday too. Can someone slow down the clock a little please? I can't believe it's the middle of November already. Sheesh!

I always end each post with a song that is special to me. As I've said before, I always have a constant soundtrack playing in my head. For this post I asked Uncle Jack to choose the song. He is a music buff and has impeccable taste, so I knew he would come up with something perfect. Thank you Uncle Jack, I think this is a wonderful choice. I especially like this part:

So if you're walking down the street sometime
And spot some hollow ancient eyes
Please don't just pass 'em by and stare
As if you didn't care, say, "Hello in there, hello"

Hello In There - John Prine