Ds Awareness Month 2016

Wow!  Time goes so fast.  Our little Jacob will be 3 in a few short weeks!!!

What a whirlwind the last 3 years have been.  Who knew “an extra chromosome full of love” would teach us so much about life – unconditional love, not to take things for granted & appreciate the simple things in life.

Look at our big boy!!  He has been staying healthy (knock on wood) – the vest therapy is really working & we have avoided a hospital stay for almost a year now.  We are praying for a healthy upcoming winter.

I have to give major props to his teacher Miss Affton – she absolutely rocks!  This gal has opened her heart to Jacob & has been so beneficial to his success.  Jacob has been going to a daycare since Feb. 2015.  Oh my goodness we are amazed at how good it has been for him!!  (of course sometimes he will have his moments but overall he is making great progress)  Every morning Jacob is excited to go to school.  When we say its time to go to school buddy he smiles & runs straight for the door.  Excellent teachers make a world of a difference – we are blessed to have Affton & her team (Jocelyn, Chris, Kim, Michelle & Maggie).  We are looking forward to the upcoming year to see Jacob continue to grow.



To help celebrate Down syndrome Awareness Month we wanted to share with you a new 501c3 non-profit organization that has come to Northeast Iowa.  The organization is called FIRE Foundation of Northeast Iowa.  The mission is to provide children with special needs the opportunity for an inclusive Catholic education.

FIRE_Logo_with region identifier_grayscale

Happy Down syndrome Awareness Month! – Love – the Schmitz Family



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RECAP – 2016 World Down Syndrome Day Project


Words from Hayden’s Mom
Hayden’s project has been so touching & powerful.   Her project actually brings me to tears – happy tears.  I can not believe the amount of positive support, encouraging notes & comments she has received!  We are very proud of her,  she has been a busy young lady.

A couple of weeks after she started her project I went on the Down Syndrome International page which is organization based in the United Kingdom.  For the last 11 years Down Syndrome International has stated March 21st (3.21)
as World Down Syndrome Day.

This year their theme is:
“My Friends, My Community” – The benefits of inclusive environments for today’s
children and tomorrow’s adults

Jacob is only 2 & I have seen major benefits of him being in inclusive environments.  He learns so much from his peers & siblings – its beautiful to see!  To see our friends (even from around the world) & community participate in her project just melts my heart.

Thank you to all those that supported her project – she has learned a lot!  For those that ordered enjoy your World Down Syndrome Day keepsakes. If you still want to purchase items we will be taking orders through March 11.  We want to make sure we get them delivered by March 21st :).  We still have a drawing coming so be on the look out for butterfly charms in the orders.  (let me know if you received one)

See below on project details.

Project Recap

As of March 1, 2016 she has raised $696.00 from products sold & extra cash donations. 

1/2 of the proceeds will be donated to Designer Genes & the other 1/2 will be donated to HADSA (Hawkeye Area Down Syndrome Association).  These two organizations are located in Northeast & Eastern Iowa.  The groups provide education, support & advocacy to those individuals, their friends, families & professionals that are blessed by Down syndrome.

(Bruce helped Hayden put together the graphs below)

54 Bracelets, 56 Necklaces & 89 Key Chains Purchased as of 3.1.16.

haydens picture

Orders from the Following States:
Iowa, Wisconsin, Nebraska, South Carolina, Tennessee, Florida

Orders from the Following Countries: 
Germany, Brazil & China

states countries

Lessons Learned from the Project:

Organizational skills, money counting, chart making, teamwork, patience, depositing money in the bank, the gift of giving, time management, plus much more!

Project Pictures:


Happy World Down Syndrome Day (3.21) from the Schmitz Family!



2015 World Down Syndrome Day “Random Acts of Kindness” Project


2014 World Down Syndrome Day “Lots of Socks” Project


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World Down Syndrome Day Project Organized by Hayden Schmitz

We are getting ready to celebrate this year’s World Down Syndrome Day on March 21 (3.21).  Each year our family does some type of activity to celebrate.

In 2016 our activity has been organized by Hayden!

for sale

This project idea started when Hayden came to me and said “Mom I made you a bookmark, now pay me $1.00 for it and I will give you a quarter back.”  At first I thought wow maybe she going to be a successful salesperson or entrepreneur one day and make lots of money so Bruce & I don’t have to finance her forever!

I asked her what she was going to do with her money if I bought a bookmark.  She said, going to spend it at the store.   I said – why don’t you sell your bookmarks & donate your money?   She didn’t really understand what or why one would donate money.  We have talked to her about saving money but not much about donating.  Bruce and I explained that a donation is a gift from your heart and your gift in turn will benefit others 🙂

I am so proud of Miss Hayden for taking the ball and running with this project.  She has been making the items, organizing and strategizing.  She even has her own store setup at home!

hayden working

Here are the details:

  • All product materials have been donated by the Brawner Family! Thank you!  So all proceeds will be donated.
  • All proceeds of the project will be donated to our local Down Syndrome organizations.
  • Everything’s in 3’s
    • March 21st (3.21) is the 3rd month on the 21st day of the year. People with Down syndrome have 3 copies of the 21st chromosome that is why March 21st was selected as World Down Syndrome Day.
    • We have 3 items for sale – a necklace, a bracelet & a key chain.
    • There are 3 specialty beads on each item in the colors of the Down Syndrome Awareness Ribbon – Royal Blue & Gold.
    • Items are $3.00 each.
  • Items will be available for purchase now till March 21st (3.21) which is World Down Syndrome Day.
  • With your purchase you receive a FREE bookmark from Hayden!
  • Let myself or Hayden know if you would like to place an order.

Previous World Down Syndrome Day Schmitz family activities include:

2015 “Random Acts of Kindness”  


2014 “Lots of Socks”


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What is People-First Language

Awhile back I thought about writing a blog about People-First Language.  I hesitated doing it because I didn’t want others to feel uncomfortable talking to me about Jacob
and / or Down syndrome.

I recently toured a school where a child with Down syndrome happen to drop something and then the Special Education teacher said, “oh that’s my little Down’s boy, he is sweet”. (EEEEKKKKK!!!) That’s when I realized some people don’t understand the People-First Language Concept – hence the reason for this blog.

Prior to Jacob coming into our life I had NO IDEA what the heck People-First Language was.  I am sure others are in the same boat & feel the same as I did.  Heck I am still learning myself 🙂

Since Jacob has been born I have heard some doctors, nurses, friends, family, etc. refer to those with Down syndrome as “a Down’s kid” or “he has Down’s” or “he was Down”.  Every time hear these phrases it’s like nails scratching a chalk board to me.


So what is People-First Language?
(BTW not a fan of the word disability, I would prefer to say the persons different ability.)

People-First Language respectfully puts the person before their different ability. By placing the person first, the different ability is no longer the primary.

It eliminates generalizations and stereotypes, by focusing on the person.

person firs.JPG

Examples of Using People First Language:

Maria uses a wheelchair

Ryan receives special education services

“a man walks with crutches,” not” he is crippled.”

Accessible (vs. handicapped) parking, bathrooms, etc.

Please be so kind to consider incorporating People-First Language into your vocabulary.  

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Happy Birthday Jacob Carter Schmitz

Jacob –
Happy Birthday!  I can’t you are 2 today!!! I remember vividly taking this picture just minutes after you were born.  Your dad & I fell in love with you instantly!

Buddy you give your mama a run for her money sometimes (just like your brother & sissy).  I remember going into your birth having a 3 page memo to all the family on what items needed to be done and when in order to be fully prepared for you coming home & the holidays.  Well after 48 hours of your birth I ripped that memo to shreds!  I ripped it up because of anger & frustration that my “perfect plan” wasn’t coming together.

Little did I know at the time the “perfect plan” was a bundle of joy in my arms – you little Jacob.

tour guide
Jacob you amaze us everyday and we are so proud of you!  Keep up the good work!  I always tell your siblings use their manners, never give up & always do your best – same goes for you Mr. Jacob 🙂

Here is to a healthy, happy & fantastic year of being 2!  We love you so very much!

Love Always,
– Mom


Happy Thanksgiving from the Schmitz Family

I am writing this blog as I have officially hit “hospital drain out mood” (lack of sleep, the stress of having a sick kiddo & feeling sad about not all being home together as a family).  Mr. Jacob has decided to catch pneumonia right before Thanksgiving this year.  I don’t know what it is about him & holidays – he always seems to get sick on holidays – booo!

I need to readjust my mind set & come back to positive thinking!  Thanksgiving is 1 day away & I have so much to be thankful for!

Thanksgiving is an act of giving thanks; it is an expression of gratitude, especially to God.

I have been thinking back over the last 10 years and what a whirlwind it has been.  10 years ago today on Thanksgiving Day Bruce asked me to marry him.  We were living in Phoenix at the time & he invited my parents down for a surprise visit.  At Thanksgiving dinner, right as I was digging into the mashed potatoes, he asked, “Erin, will you marry me?”  My response, “Are you serious? Of course, I will marry you!”


I love this guy to pieces.  We are both strong willed and butt heads often but I sure do adore the guy!!!

Here we are today, living in Iowa with our family close by & raising 3 adorable children. I am thankful for my husband, my parents & in-laws, having a home full of laughter, supportive friends & family, my faith, & the list goes on.

I am especially thankful for all of my children – Hayden, JD & Jacob.  When we received the birth diagnosis that Jacob has Down syndrome our world had been rocked with emotions.  At the time of the birth diagnosis I didn’t realize what an amazing blessing God had delivered to us.  Each child is a blessing, Jacob happen to come with an Extra Chromosome Full of Love.  Jacob has a pure & beautiful soul with a smile that shines bright.  He teaches us valuable life lessons such as patients, acceptance of others, to be strong, to stop and smell the roses, & to appreciate the simple things in life.


It is beautiful to see the connection between Hayden, JD & Jacob.  Little do they know every day they are practicing inclusion, this makes me so proud.  Thanksgiving is about being thankful, helping others & inviting others to celebrate with you (just as the Pilgrims included the Native Americans) In other words Thanksgiving is about inclusion.  Inclusion is where everyone belongs & abilities are celebrated.  i am so thankful for our support system (family, friends, daycare, future school, church, etc)  the people part of our support system have opened their hearts to Jacob, included him and I am so thankful for that  – I am optimistic about the future 🙂

Have a blessed thanksgiving.

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Discover October as it is Down Syndrome Awareness Month

With October right around the corner for most of us it means breaking out the sweaters, cheering on our favorite football teams, visiting pumpkin patches & getting costumes ready for Halloween.

However, for those of us who have loved ones with Down syndrome, the significance of this month means so much more. October is Down syndrome Awareness Month.

The Schmitz Family has some fun activities planned to celebrate this month!

First on our list is baking!

Yummy Pretzel Bites with Love by Hayden & JD Schmitz 

  • The pretzel represents strength.  Our brother is a little fighter!
  • Then add a Hershey’s hug or kiss.  Our brother gives awesome hugs and blows the best kisses!
  • Then top the treat with an M&M to add in the love.  We love our brother so much!

pretzel hugs 2

Our next activity is this Sunday at the HADSA Buddy Walk in Cedar Rapids and the following week in Cedar Falls at the Designer Genes Buddy Walk.  We had a blast walking last year & look forward to this year’s Buddy Walk events. 

Buddy walk

Down syndrome Awareness Month is chance to spread awareness, advocate and promote inclusion throughout the community.  During the month of October, we celebrate individuals with Down syndrome; make people aware of their abilities & accomplishments.

Join in on the fun!

I am making a 2015 Down Syndrome Awareness Month Scrapbook –

so post your pictures & tag me as you celebrate! #anextrachromosomefulloflove.com


If you are looking ideas on how to recognize October as Down syndrome Awareness Month below are 21 easy ways.

Why – 21 ways?
People with Down syndrome have an extra copy of the 21st chromosome.  To us it’s just an Extra Chromosome is Full of Love.

  • Participate in a Buddy Walk.
  • Commit to eliminating the R-word out of your vocabulary.
  • Move beyond just Down Syndrome Awareness into Awareness & Acceptance.
  • Promote inclusion at school and beyond.
  • Add this cover to your Facebook page for a few days.

October is (5)

  • Tell a friend a couple of facts about Down syndrome that they may not have already known.
  • Post a fact about Down syndrome on your Facebook status.
  • Create a table at your library with basic information about Down syndrome.
  • Donate time or money to an organization that will benefit those with Down syndrome and their families.
  • Organize a “Denim for Down syndrome” day at your school or work to promote awareness.
  • Write a letter to the editor of your local paper about celebrating Down syndrome.
  • Get Inspired – Check out this organization & the scholarships they provide for those children going onto further education after high school.  www.rubysrainbow.org.
  • Wear Royal Blue & Yellow they are Down syndrome awareness ribbon colors.


  • Make a new friend with someone that has Down syndrome.
  • Do a balloon release to be thankful with where society has come over the many years to include those that have Down syndrome.  And to be thankful that advocacy is happening for those with Down syndrome (& others with special needs) is heading in a positive direction.
  • Stay positive about the future for people with Down syndrome (& others with special needs)
  • Did you know about the Gigi’s Playhouse program?  If not check it out gigisplayhouse.org.
  • Continue to educate yourself about Down syndrome.
  • Open your hearts to people with Down syndrome.
  • Open your hearts not only to people with Down syndrome but others with special needs & promote inclusion.
  • Believe & have faith

Thank you for recognizing October as Down syndrome Awareness Month!

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You may be asking why is she referring to Down Syndrome as an Extra Chromosome Full of Love

blog 1

This is my first ever blog post 🙂 So here goes….

My husband & I have three children and our youngest, Jacob, happens to have Down syndrome.  He is 18 months old today!  Happy 1.5 birthday buddy you have come a long ways!!  So here is the story:

We had a birth diagnosis & shortly after birth Jacob went to the NICU because he was having breathing issues.  While Jacob was in the NICU I would stand by his bed for hours on end, praying, thinking & wondering what it was going to be like to raise a child that has Down syndrome.  I was in unfamiliar territory, scared, sad, mad, nervous, and even worried that I wasn’t a strong enough person to be his mom.  The emotions were rolling on & on.

As the hours / couple of  days past it clicked with me, even though I did not! like being in the NICU I felt & saw so much LOVE!!  I felt Jacob’s love RADIATE, I saw the amazing connection of love between Jacob with his brother & sister, family members, & friends that came to visit.  Even with some of the nurses & doctors I saw the loving care connection.  I felt the love from God as I prayed hard to Him.  As I started telling friends and family that Jacob has Down Syndrome I referred to Down syndrome as just an Extra Chromosome Full of Love.  

I guess the phrase an Extra Chromosome Full of Love just stuck.  As a total surprise my sister in law and her family designed Team Jacob shirts in honor of World Down syndrome Day (March 21).  The shirts are perfect and little did we all know they would be presented at the most perfect time.  They had been working on the project for some time prior to World Down Syndrome Day.  On March 19, 2014 Jacob went in for unexpected / urgent heart surgery.  2 days after his surgery they shared the shirts with us.  Bruce and I were in the PICU with Jacob as he was recovering.  Their thoughtful project brought us both to tears; we were emotional drained and still scared out of our mind, the shirts gave us the boost to keep fighting / advocating for Jacob.  We are so thankful to the Kortenkamp family — we LOVE the shirts!!!  I wear mine with pride and remember how strong Jacob was recovering when he had been so sick.

extra chromosome

That Extra Chromosome Full of Love has put us on a Unexpected Beautiful New Journey.  Honestly a journey that I not change for the world.

As I look back over the last 18 months I have continued to experience the love!  The love is present in his therapy sessions, at his daycare, to our faith, friends / family and even strangers that we meet in public.

And WOW I have to say how amazing the Down syndrome community is!!!  We have met wonderful families and other parents touched by an extra chromosome full of love that will be our friends forever!  I will always cherish their friendships and know that if it were not for our children we may not have ever connected.

I look forward to what is to come as we move along on this beautiful unexpected new journey!

We are so proud of our little Jacob, he fits perfectly into our family 🙂

I am new to blogging – so bear with me I am still learn the ropes.  check out my website at http://www.anextrachromosomefulloflove.com – it has our story as well as information for anyone (parents, friends, colleagues, family, etc) who has been touch by an extra chromosome full of love.

Feel free to follow me…. Stay tuned 🙂

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