Showing posts with label network. Show all posts
Showing posts with label network. Show all posts

Monday, September 5, 2016

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



Sunday, May 24, 2015

#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 FundWe are one big rockin' family.

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


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.




Wednesday, July 30, 2014

My Daughter With Down Syndrome Has Changed Me


When Ellie was born I knew my life was forever changed. I felt it, not in my heart but in the pit of my stomach. It was a fear that I would not be the same person from that day forward. A fear that my life would be filled with doctor's appointments, therapies, and research. That my duties as mother to my two older boys would be sacrificed. I worried for how my marriage would suffer because of this new journey I was about to take. I loved this tiny being with my whole soul but I worried that fighting for her would take away a part of who I was.

Those feelings in the pit of my stomach have since faded. The fear has grown into hope, and now I feel it in my heart. I now have a full, grateful, bursting with joy heart and it's hard for me to even put into words. I would like to try and share with you how Ellie has changed me. She has changed me in ways I never could have imagined.



1. Stopping to Smell the Roses. I remember wishing away the days with my oldest son Will, pushing him to get to that next milestone and stressing that he wasn't getting there fast enough. With Luke it got a little better, as my second baby I found that life was flying by faster than I expected. I wanted to soak in every phase with Luke. Ellie has helped me back up the truck, slow down, and enjoy every minute. She takes longer to accomplish her milestones and being the third child I can't tell you how much I'm enjoying this time with her. I remember feeling offended when someone said "you are lucky because you will have a baby longer", but I get that now. And to be honest at 18 months she's already moving into toddler-hood and has the sassy attitude to go with it!

2. Human Rights. I have never in my life felt so passionate before for all people; race, religion, sexual orientation or being differently abled, I will fight for the equality that every person on this earth deserves. I lived in a naive bubble before Ellie, I cared about human rights but never at this level.  I am now aware. How lucky am I to have a daughter who at 18 months old has already taught me this important life lesson.

3. Nutrition. As silly as this one sounds, I have to bring it up. I have learned so much about nutrition because of Ellie. I have learned that some children with Down syndrome do better when they are dairy free, or gluten free. These are ways of eating that I never would have explored if it weren't for her. I know more about supplementation as well and am even taking some of the vitamins myself. I am excited to learn more about healthy eating as Ellie grows up, and the rest of our family will benefit from it as well. 

4. Understanding Work/Life Balance. I am a career mom, and with being a career mom comes a lot of working mom's guilt. Once Ellie arrived and rounded out our family of five, I was able to take a step back and look at what is important. "Things" are not as important to me now. I am not feeling the constant push to rise to the top of the corporate ladder. It is an amazing feeling to get my priorities in order! If Ellie wasn't here I don't know if that would have happened. She took me down a notch and brought me back to reality. I am lucky to have an amazing boss who gets it, to work for a company that is flexible and understanding, and to have the security in knowing I'm building toward a future for my family.

5. The Importance of Connections and Support. Where would I be if it weren't for the internet? I have mentioned this before, but the connection I feel to other families who have children with Down syndrome is magical. There is no better way to put it. Having the support of other moms gives me such reassurance for Ellie's future. I have these women to lean on for the rest of my life. We will have each other's backs through it all, the hard times, the joyful times, the scream at the sky and cry times. I make new connections constantly and when you are on the journey of raising a child with Down syndrome, to know you are never alone is so comforting.
*If you are pregnant with a child with Down syndrome or have a child with Down syndrome birth to age three and you are not in a Rockin' Mom's (or Dad's) group, please go to our DSDN link and click"connect". You won't regret it, I promise!

6. Being Different Is Awesome. This to me is the most important lesson Ellie has taught me. As soon as Ellie was born we talked to the boys about Down syndrome and what it meant. Even before she was in our lives we always reiterated that "if everyone in the world was the same, what a boring place that would be!"  Because kids ask questions and they notice people who aren't like them, and even say awkward things out loud sometimes. I'll never forget the day Will asked me "mommy what is wrong with Uncle Danny?" I took a deep breath and started to try to explain his story and why he has an intellectual disability. I barely got out a "Well honey.." when Will said "He's just so shaky!" He wasn't even asking about his disability. He didn't see it at all as a matter of fact, he was noticing how my brother shakes. It brought a huge smile to my face and I was able to explain that he is shaky because of the medicine he is on. 

I hear my boys educating their friends about Down syndrome. I hear them being more accepting and loving because of their sister. Now if we are out and about and they see someone who is differently abled, they will wave and say hello. This to me is the biggest part of how Ellie has changed not only me but all of us. Our hearts are bigger because of her. I also see her changing the hearts of our friends and family.

Yes Ellie, you have sure changed your mama. And I am so glad you have. You are the little gift my soul needed. Thank you for opening my eyes to some of the biggest lessons I will ever learn in this lifetime. I am eternally grateful that you are mine. I can't wait to see what else you can teach me.



Friday, March 21, 2014

7 Things on 3/21 - World Down Syndrome Day

We love our neighborhood!

This is our second year celebrating 3/21, World Down Syndrome Day. Looking back at this day last year I can honestly say I didn't know much about Down syndrome. I thought it would be fun to share 7 things that I have learned in the past 14 months. We have had a crash course and some of the information is really surprising! I hope you find this information interesting too. This post is also jam packed full of photos, since it's been a while and I have a hard time picking my favorites!


Princess Ellie says... keep reading, this is some interesting stuff!

1. Bear with me, point 1 is a long one but it's very important. To commemorate World Down Syndrome Day, I am so happy to announce the launch of DSDN, the Down Syndrome Diagnosis Network.  We are a non-profit group comprised of 8 mothers from across the US who all have a child with T21. We come from varying political and religious backgrounds and we believe in a pro-information stance. Our mission is to create an unbiased family-centered discussion of Down syndrome within the medical community. 

  • We encourage parents to respectfully write letters to their medical providers whether they had a poor or positive experience in receiving the diagnosis. 
  • We help to connect families to birth-club type support groups on Facebook. These private groups have been my lifeline and I've made friendships that will last a lifetime. 
  • We help connect families with their local Ds organizations to encourage face to face support. Sometimes just hearing the words "I understand" can mean the world. 
  • We have an online book of over 80 true-life birth stories linked to our site to help parents know that they are not alone on this journey. You can find Ellie's story in the "Unique Diagnosis" section. 
  • We have compiled a links section to the most current and useful Ds related sites such as Down Syndrome PregnancyInternational Down Syndrome CoalitionDown Syndrome Blogs and more.

I'm so grateful to be a part of this community and am passionate about our message. You can also find us on Facebook and like our page

Part of my passion in getting involved in this non-profit stems back from something I learned shortly after Ellie's birth. Did you know that 90% of babies prenatally diagnosed with Down syndrome are terminated? This means only 1 out of 10 babies like Ellie get to meet their families. I researched this number a little deeper and have found that the % may not be as high as reported. The statistic is based on women who are opting to have invasive testing (like a CVS or amnio), and it does not include the women who refuse prenatal testing. So the number may not truly be 90%, but it's still high. I think I am discovering part of the reason for this staggering percentage.

Many of the moms in my online group have shared that they were pushed to terminate by their doctors when they received their diagnosis. I've also had the opportunity to talk to pregnant women who are facing life-changing decisions. One story that I can't shake from my mind was a mother I spoke with who found out her unborn baby had T21. She was 20 weeks along. The doctors informed her that her child will never walk, never talk, and will be in a group home by puberty. He pleaded with her that was unfair to her other children to bring a child with Down syndrome into their lives. He told her it was utterly selfish of her. She was heartbroken, scared, and completely defeated. Ultimately, this mother chose termination. She had complete and total trust in her medical provider. As a mother of a child with T21 I know wholeheartedly that the information she received was not true. It is crucial that the medical community is providing unbiased and up-to-date information when discussing options with their patients. The information they are providing is life altering. This is why DSDN's mission is so important to me.

2. In keeping with the numbers theme, I was also surprised when I found out that Down syndrome occurs in 1 out of 691 live births (National Down Syndrome Society). There's a misconception that more women of "advanced maternal age" have babies with Down syndrome. It's true your odds of having a baby with Trisomy 21 go up as you age, but more babies are born to younger mamas due to the amount of women having babies in their younger years (approximately 80% of babies with Ds are born to women under 35) See the below chart that shows the odds based on age from The March of Dimes.



3. Some people with Down syndrome can drive! I was excited when I heard this because it's something I have wondered about but I had no idea who to ask. Noah's Dad did a great post highlighting 7 of these drivers. He gave me permission to link the post here, Noah's Dad - Can People with Ds Get Their Drivers License? I wonder if Ellie will get her drivers license someday? Only time will tell!



Come on dad, give me the keys already! She looks so grown up here.

4. The life expectancy for a person with Down syndrome has gone from 25 back in 1983 to 60 years old today (National Down Syndrome Society) By the time Ellie is older I am curious what this statistic will be! It's amazing the advances that have happened just in the past 30 years and I have a feeling we will look back in amazement in the next 30 years.

5. College opportunities! Did you know that there are over 250 college programs nationwide that are tailored for kids just like Ellie? How awesome is that? In the weeks after I had Ellie I reached out to the Down syndrome support group on Babycenter, and met Margaret "Gary" Bender. Her daughter Alex is AMAZING. Alex is now 20 and last year she won the bronze medal for downhill skiing in the Special Olympics in S. Korea. Today she is a freshman at the University of Cincinnati in the TAP Program. I read Gary's book From Grief to Celebration in the first month of Ellie's life and it was so encouraging and uplifting for me. It was just what I needed at the time to realize Ellie's future is so bright. Alex is such an amazing role model and I'm grateful for mothers like Gary who have paved the way for new moms like me. What a community of support! 
There's a great site to find college programs for special needs in your area called Think College. I'm thinking Oregon State needs a program like this.... who knows what'll be available in 17 years ;) (GO BEAVS!)
Yay for college!!
6. "Is she walking yet?" I have this photo of Ellie as my screensaver at work:



I've been asked this question at least 10 times because age 1 is the average age that most kids learn to walk. Well kids with Down syndrome have their own development chart and tend to do things a little later than typical kiddos. The average age for a child with Down syndrome to walk is actually 2. I had no idea until we had Ellie! Here's a chart that helps put the range in perspective: (from www.dsmig.org.uk/pdf/downs3.pdf)
And as I like to say, Ellie does everything on "Ellie time", and she is crawling around now and surprising us daily with the things she is learning.



7. "God only gives special kids to special parents"...Well duh, Jess and I are awesome, right? We heard this sentiment A LOT after Ellie was born. To be honest, it's not true. Surprise! We are just like any other mom and dad, and it's not a stretch to say we are actually pretty dang boring. But I do believe God knew what he was doing when he gave us Ellie- special or not! Just like he knew what he was doing when we were given Will and Luke. In other words, we are just like any other family of five and I truly believe our kids were hand picked for us. And I feel very lucky that they are ours.

Our three. And no, Luke isn't wearing hair clips it's his backwards sunglasses!
Before I end this post I also have to share this amazingly beautiful and inspirational video that the IDSC (International Down Syndrome Coalition) made for World Down Syndrome Day. It is sure to make you smile! I am honored this year to have Ellie's photo picked to be in the video! See if you can find her!! (hint: she's about midway through, 2:17 to be exact) You can watch it here:

IDSC 2014 World Down Syndrome Day Video

And lastly (I promise) I woke up this morning, on 3/21 and saw that Ellie and our story made the news. My heart is full and I am feeling so grateful. You can check out the article in the Oregonian here:

The Down Syndrome Diagnosis Network Sprouts from Moms Looking for Support

My song choice came to me during my 11 hour flight to Asia last week. I was watching the movie The Delivery Man with Vince Vaughn when I heard it. I was rummy and tired and missing my babies, and it totally made me cry (what song doesn't these days?) I had never heard it before and it really made me think of my kids, I thought it was a good fit for today's post. :)

Little hands
The world is yours
Hold it close with open arms

Little feet
With miles ahead
Take it slow, see it all, take it in


Little Hands - Inland Sky 
High fives with neighbor Dani!
So? Who is the fairest??
Having fun with big brother and Eric.
Will, Luke and Ellie with Eric and FAMOUS IRIS, and Dani! xoxo
Giving big squeezes to her friend Kate.
Having fun with Kate!
It's World Down Syndrome Day!
Hangin' with my favorite guy (I'm not kidding, this girl is smitten with her daddy!)
Thanks for reading my mom's blog, I hope you learned something new today!!