Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Tuesday, December 23, 2014

Partnership to Make a Change

The Search

Remember those moments right after you heard that your baby might have Down syndrome?

Maybe you cried. Maybe you snuggled your new baby.  Maybe you thought about every possible future for your child. Maybe you were relieved that is wasn’t more serious. Maybe you were shocked.

Maybe you couldn’t do anything.

Undoubtedly, your mind raced through all the experiences you have had with people with Down syndrome, that is, if you had ever had any.

I relied on the internet for lots and lots of photos of babies with Down syndrome.  Google, Instagram, Wikipedia, blogs, organizations….so much out there – good and bad.

In talking with other moms, I know I am not alone in my searching….

“I remember laying in the hospital searching  ‘beautiful people with Down syndrome’ all night long (after she was born).”  Sierra

“It made me worry more.  I never should have.  All I read was all negative.” Elsbeth

“I Googled for pictures of babies with Down syndrome after I took the Maternit21 test.”  Cristina

I did once and never did again, I just wanted to talk to other moms who went or was pregnant with my situation. Never did much research it created too much anxiety!” Jennifer

“I wanted to see mostly pictures of kids and babies since I had seen adults before.” Lisa

I didn’t specifically seek out pictures but, when I came across them, they did add a lot of light into a pretty dim time!”  Shana

“I buried my head in my phone for a good 3 weeks.”  Becky

“In the community and even in my job working with folks with disabilities, I rarely saw people people of color with Ds. My husband and I were curious. Even when searching the internet, it was hard to find actual photos.” Chandra

“I searched Pinterest and it actually made me feel better.” Kelly

In fact, when I posted the question to my Facebook page asking whether parents looked at pictures and information online after the diagnosis, the response was immediate and overwhelmingly clear- the internet became a lifeline of support for parents to that new baby with Down syndrome.  Now this shouldn’t be a surprise considering the access to information that exists today.  But to hear time and time again that new parents sitting in a hospital room are searching for this information at such a delicate time?  It makes us want to do better.  In fact, getting parents accurate, reliable, current information is what drove us to begin Down Syndrome Diagnosis Network.  We wanted parents to have a website to find that would help them in that diagnosis stage and be specific to those needs.


Izzy's Photo: Target
You may have seen the article about a new (adorable) face gracing the Target ad in December.  Izzy Bradley, daughter of our own DSDN President Heather, was selected as model for the ad after a request for models  was sent out via Down Syndrome Associate of Minnesota. That DSAM message led to Izzy’s casting call. Heather never envisioned a modeling career for Izzy or her other daughters, but this seemed like a way to continue to support new and expectant parents with a Down syndrome diagnosis. 

“My husband and I thought having a model with Down syndrome would set a good example for other retailers,” Bradley said. “Ads are becoming more diverse in general, but we feel people with disabilities are still left out.”

People, Huffington Post, Yahoo news and ABC are among the media embracing and sharing this story. The response has been incredible and sweet Izzy has gone viral with nearly a million views around the world via many news outlets. 

Heather believes, “A simple image can affect perceptions of what a Ds diagnosis means. These images should be commonplace in advertising.”

What if…..

What if this wasn’t such “news?”

What if people with DS and other disabilities weren’t something that we had to seek out?

What if people of all shapes, sizes and forms were a part of our mainstream media each day?

What if you opened your favorite retailer’s ad and saw someone that looked like someone you love there in the pages?

Could that impact a family at the time of diagnosis?  

We think so.

DSDN is proud to partner with Changing the Face of Beauty to support the #15in2015 campaign!

Changing the Face of Beauty’s mission is: To encourage the integration of individuals with disabilities into general advertising and the media. "Changing the Face of Beauty" was founded by Steve English and Katie Driscoll.  This campaign grew from the love that they both have for their family and for the community of children and young adults with disabilities.  They both felt it was important for everyone to be included in advertising.  They started their own campaign in the beginning of 2012 and through the help of organizations, companies and media outlets recognizing their efforts they have grown and are now speaking out for children and young adults with different abilities around the world.

“We are ready for a more integrated media here in the United States.....in the WORLD.  So it is time to speak even louder.  Let’s remind retailers where we shop by calling them out.  Let them know where that 225 Billion dollars comes from.  It comes from YOU and your family.  Show them your face.  Show them what YOUR family looks like and post a picture to social media calling them out”  says Driscoll.

Join Us!
Camden's Photo: Jones Photography
To be a part of the campaign, on social media post a pic.  Use this caption (this example includes GapKids!) 

“Hey #‎GapKids #‎IMREADY for change. We want YOU to include models with disabilities in 2015. We want YOU to be part of the #‎15in2015!”  #The Ellen DeGeneres Show #‎Changingthefaceofbeauty #DSDN

Be sure to LIKE the page of the retailer and use hashtags to link to who you are calling out to the campaign!  (Katie would love to see this reach a larger audience and is hoping to catch Ellen’s eye ;) )

Since rolling out this idea yesterday, we've had many families submit pics and tag favorite stores. One mom, Meghan Roberson, submitted this photo of her son, Camden.  She sent it because, "Camden is brilliant and beautiful. His little bit of extra gives him a bit of extra in everything. Changing the face of beauty is the perfect campaign for him to be a part of because he has changed his family for the better and we see the world in a more beautiful way."  Follow more of the Roberson's journey with Camden here.

Check out these kids!
Jude; captured by mom

Ginger, Jude's mom wanted everyone to know that "Seeing children who look like my child in advertisements is an important form of representation. We want others to see Jude as a part of our society!" 

Jadon's mom, Sheryl, also added to his caption and included, "Jadon's ready to share his charm and personality...think you can handle it..."

All of us want to see diversity represented.  Will you join us? 

Facebook, Twitter, Instagram, Pinterest, Blogs – where can you share?

Gap, Pottery Barn, Walmart, Kohls, Fisher Price, Pampers, Huggies….Who will you call out today?
Jadon; captured by his mama

Let’s use this viral story to make a BIG difference for parents and families with a new diagnosis.

Tell us below who YOU are going to call out! 

  Looking to make an end of the year contribution?  Click here to donate today!

Sunday, November 16, 2014

Holiday Card Season!

It's that time of year again--holiday card season!

I LOVE our family photos so much this year, so they are of course our holiday cards.  We may never have another family pic where everyone is looking so good at the same time, so I will milk this for all it is worth ;)

Here's a sneak peek (and major props, still, to Aubrey Kinzie Photography!)

The other reason I LOVE this is because it is an excellent way to share our family with others.  Although I don't see it day to day, our family does have something unique going on -- all those redheads! Oh, yes, and Down syndrome, too, but we ALWAYS get comments about those little gingers of ours ;)

At DSDN, we want families to include medical providers and other professionals on their holiday card list.  What a great way to remind doctors about our families and for them to see our families through the years!  I also plan to send a note to my first OB/GYN so he can see what we are up to these days.

Will you join us again this year?

Many thanks to those that have worked towards this mission too! (Thanks Campbell and Mark!)

Tuesday, November 4, 2014

Welcome Totes of Hope!

Do you ever just wonder sometimes how things just really seem to work out?  Even when it doesn't seem possible?  Amazing.

DSDN is really taking off!  We are supporting over 1000 moms with children under 3 in our  8 online groups!! Recall we just launched in March, so that really is incredible to me! We also have our book and postnatal resources available for those parents and medical professionals in the diagnosis phase.

I am realizing each day how each person and moment has been placed in my life very intentionally to help achieve great things.  There are several women I have met over the past years that are doing wonderful things for families in the DS community.  Several also focus on welcoming new families- which I believe is critical.  This is a point where emotions run high. And not just one or two feelings, but often it is an incredible range.  But, since you know this is my passion, I know you know that. Read about baskets happening in Oregon, Minnesota and Kansas City here and here.  This is a project, like many families are doing, that really inspires me to do MORE.

Not too add more to my workload, but I really feel a call to get more involved locally.  I had the pleasure of sharing our DSDN work with the local GiGi's board this weekend and shared a bit about starting up a welcome basket program here. They were wonderful to meet with and have so many fantastic pieces in place to support families. I am so lucky to have an awesome team of moms who are willing to help, an organization that can support our fundraising efforts and distribution of baskets--- and we are off!!!

So coming soon to local hospitals--Welcome Totes of Hope for parents with a new baby with Down syndrome.

We are hoping this will be a tremendous support and comfort in those sometimes challenging first days.  Whether it is a prenatal or birth diagnosis, we want parents to know the local and online supports available to them.

Our goal- Raise $4000 to create at least 40 baskets for babies that will be born in our area hospitals throughout the next year.

Think we can do it? I KNOW we can!  I can't wait to support new families even further!

Ready to sponsor a tote by donating $100?
Can you share in the cost of funding a tote with others?
Go to GiGi's Des Moines and click DONATE TODAY  and please make your donation in honor of Totes of Hope.

THANK YOU for helping us make a difference for local families as they begin this journey with Down syndrome! And BIG THANKS to GiGi's for helping this become a reality!

Stay tuned!

Wednesday, September 3, 2014

Why information matters

Have you ever woken up and been SURE that something had happened?

That is precisely what happened the other morning.  In fact, I was so sure that I spent a great deal of time searching the internet for a trace of what I remembered when nothing showed on my trusty newsfeed. But all search attempts found not a single hit for the story racing through my mind.
The story I was seeking out?   

“New mother delivers one-two punch to doctor after delivery” 
A woman, alone in a hospital bed snuggling her newborn baby hours after delivery, punched her doctor. Twice.  Calmly. Whole-heartedly punched the doctor. Why you may wonder?  As she stared at her first-born child she had just welcomed into the world, and long before into her heart, the doctor broke the news, “We believe your baby has Down syndrome.”  There was mention of blood tests to confirm the suspicion.  There was a nearly illegible handout on the Facts Of Down Syndrome with a copyright date in the previous century. There was a sermon on the challenges, medical and social, that are sure to lie ahead for baby and the family.  There was the customary apology. All it took was the final statement of “I’m sorry we didn’t know about this sooner” for the fists to fly.  

It also could have gone something like this….

A seasoned mom lays on a surgical table and hears the soft cries of her newborn child. She notes the unusual quiet in the background as the medical team tends to her and the baby.  Her husband notices looks of uneasiness around the room and the couple exchange glances preparing to hear the worst possible news.  The doctor turns to the parents while stitching her abdomen back together and mentions that they believe the baby should have a karotype completed; they think the baby might have Down syndrome. The surgery is completed and the mom is wheeled into recovery.  Pumped full of pain medication, experiencing the postpartum power of emotions and hormones and without her precious baby, she begins to process the doctor’s words.  (In this scenario, I imagine dad was the one that let loose)

Or this…

Parents give  snuggles and kisses and then watch as their newborn is taken to the Neonatal Intensive Care Unit just after meeting their baby. They take a moment to themselves and embrace while preparing for what comes next; they’ve known for weeks that this baby would have Trisomy 21.  A support staff member enters the room and gives a sideways nod while offering condolences, “I’m sorry they believe the baby has Down syndrome.  I know that sometimes these little ones don’t walk or talk. I think there are places where you can place her so you don’t have to be burdened.”  The mother replied, “That won’t be necessary. We have a terrific support team in place to help guide us and support our child.”  And then they kicked that staffer right out of the room. Literally.

Would you blame these parents? 

Although I would never condone violence, it doesn’t take a large stretch of the imagination to begin to see how these scenarios could end this way.  Imagine receiving what you believe to be life-altering information in any of these situations.  Now understand this….It happens often. In this decade, year, week. Parents are broad-sided with this diagnosis and, more often than not, left to find their way. Whether it be due to a lack of understanding about Down syndrome on the part of the physician, a newly-minted medical professional delivering the news for the first time or just someone who really has received no training or information otherwise- it happens too often.  

I get the lack of understanding on the part of the general public.  Heck, I was someone that knew little to no information about DS before entering this adventure. But I am not a medical professional.  I am disappointed each time I hear stories of how the diagnosis was delivered.  Sometimes I am nauseous.  To know how vulnerable and emotionally-charged that moment can be and hear words that are handed out seem unbelievable.  In fact, the stories above may not be ripped from headlines today, but they are each parts of stories that real families have experienced.

I can begin to theorize why this sometimes happens in the medical community…

  •   Delivering a diagnosis does not happen often for each doctor ---- Some may only have a patient or two, ever.   Few, if any, have received training on how to handle the conversation
  • It can be a medical concern --- It is also a baby, but first it may be viewed as a medical concern. Some medical staff may feel it is their duty to give the diagnosis and it is someone else’s duty to pick up the pieces.
  • Lack of experience with an understanding of Down syndrome, in general ----This is not a widely-studied area in medical training.  Often it is a slide of information explaining the condition and possible related medical issues. Background knowledge and personal beliefs also play a role in how doctors perceive the diagnosis

How can we make this better for parents and medical professionals?   

  1.  Access to information about what is the reality for a Down syndrome diagnosis in 2014.
  2.  Access to medically-supported materials that assist physicians in delivering a diagnosis.
  3. Resources for new and expectant families in the form of experienced parents of children with T21.

What would be ideal for a parent to hear?
  •   “Congratulations!" They did just welcome a new life into the world and that baby should be celebrated the same as any other.
  • “Here are some resources in the area for you to connect to.”  There are incredible local organizations doing amazing things for families new to the DS club. Medical teams do not need to have all the answers, just the right resources to direct a family to. 
  •  “Here is some information to read or look at when you are ready.”  Books like Unexpected , Gifts, and Babies with Down Syndrome, along with resources from national DS organizations, can be very helpful in the first months, but maybe not that first day or night.  Getting these into a parent’s hands for when the time is right can be critical in helping parents move forward. There are many resources out there that organizations are happy to share.
  •  “Would you like to talk with a parent of a child with DS?”  Some parents may be interested, but others may not. Giving the option and have resources available should be a standard practice. 
  • "Try to stay away from the internet and focus on the new baby in front of you." Although some parents will want to devour information and learn as much a possible about what may be in store, it wouldn't hurt for them to know there will be plenty of time for that in the years to come.  This time will pass quickly and they do not want to miss it all.
Hearing diagnosis stories from hundreds of families over the past years and compiling Unexpected led to the creation of Down Syndrome Diagnosis Network (DSDN).  I've heard diagnosis stories ranging  from incredibly supportive to terribly discouraging. The positive stories give us so much hope that supporting physicians will help them support new families. We aim to get parents connected and support families as they join the T21 community.  We believe making connections with medical professionals will have an enormous impact on the conversations yet to come with parents.  By providing support to the physicians supporting parents, we can make a difference!

What was your diagnosis conversation like?  Join in the conversation and follow us on Facebook at Down Syndrome Diagnosis Network.  Our goal is bridge the gaps so that parents receive accurate, up-to-date information upon hearing a diagnosis.

Sunday, July 27, 2014

Want to help?

So we haven't done any fundraising yet,..... DSDN's mission is really where my heart has been leading, so instead of doing a local fundraiser for Owen, I am going to do a quick 2 week fundraiser for our nonprofit!  My goal is to raise $500 through donations and/or shirt sales.  Think I can do it?  I have no idea, but I really feel called to try.

Why fundraise?
We had an excellent trip to Indianapolis.  We met many new families to connect with and were able to meet up with many moms in our Rockin' mom groups.  It was so wonderful to hug people and children that we have grown with over the past year and a half.  We even got to meet our newest Rockin' baby who was 3 weeks old!  During the conference we were able to connect with parents all over the country who are working to do amazing things locally.  The local groups were very receptive to our mission and the additional layers of support we could offer them and the families they work with. There are two conferences that we would love to also do a booth at in 2015, so no time like the present to start saving!

Why donate?
  • You believe in our mission and the work that we are doing.  
  • You understand our team's efforts to raise a family and also launch and manage a national nonprofit organization.
  • You think Owen is adorable ;)
  • You think I am awesome ;)

How to donate?
  • Booster Campaign--buy a shirt (like the one on the right)  It sticks with our rockin' theme and has the DSDN logo on the back. Shirts are $25 with shipping and orders must be placed by August 8th.
  • DSDN page- donate through paypal  You can donate any amount! $5, $10, $21? Remember even $1 donations add up.  We appreciate anything you can do to support our work.  There is also an option to set up a monthly donation, if that is of interest to you.

What more can I say?
THANK YOU!!  I really am not one to fund raise, but knowing how important our mission is--to get families the information and support they need and deserve at the most critical of times-- I am more than willing to do it. That you even might consider supporting our mission is humbling and appreciated.

I'll update progress in a few days. 

 $500 in 13 days. 

Let's do this!