On September 15th, 2006, Noah James Nedens entered this world as a double rainbow lit up the sky.  It was a spectacular day to celebrate the birth of our healthy baby boy, who just happened to be born with an extra 21st chromosome.  Noah scored 9’s on his Apgars, nursed without trouble, and melted into our arms and hearts.  Many came to welcome him and also fell madly in love.  Noah came home from the hospital a few days later and our lives took on a love-filled, slower, more meaningful pace. 

It is truly our privilege to be Noah’s parents.  He has taught us more about love, and how to navigate through this world than I could ever have imagined.  He exemplifies a life lived to the utmost, filled with unbridled exuberance and compassion.  More than that, he has a gift for sharing his uninhibited enthusiasm.  I have witnessed strangers’ lingering looks and perhaps dismay turns to joy as Noah first mirrors the others’ expression and then turns it upside down with his grandest smile. 

As with all meaningful things in life, our journey isn’t always effortless.  Noah struggles to accomplish tasks he understands are simple for others.  But, as little feats, such as zippering his own coat, are met with impromptu dance parties in the kitchen, Noah teaches us to celebrate and be joyful.  We also sometimes grapple to understand each other.  I believe this causes the greatest frustration and heartache for us all.  Noah longs for connection but, at times, ends up lonely and frustrated.  I imagine how exasperating it is for him when he is unable to appropriately convey his thoughts and feelings.  As his parents, we become Noah’s voice when he struggles to find his own to advocate for his needs.  At times it can feel overwhelming. 

Navigating this journey has taught me how extremely profound it is to have friendships and belonging.  The fear I feel now still does not lie in his diagnosis.  Instead, I fear that I am not doing enough, or at other times I am pushing too hard.  For example, I do not simply want Noah included or accepted, but appreciated, welcomed, and accommodated.  I worry that if I force inclusion he may be left to fend for himself in a classroom without the appropriate supports, but I also fear that if I don’t fight hard enough, he may never reach his full potential.  I am constantly asking myself questions like, “How do I ensure that others have the benefit of getting to know him and vice versa?”

What a journey this has been, and continues to be.  Our family, including all the friends who have now become part of our family, is priceless to me.  I will be forever grateful to them as we continue its course, together.  It was, perhaps, not the voyage we had envisioned going into that routine ultrasound, but it is the one we have come to know as truly much more beautiful.

Please consider donating to the Down Syndrome Association of Wisconsin Fox Cities.  This wonderful organization is committed to creating a more beautiful world and is fully funded through your generosity.

Thank you!

What are the funds raised used for?

DSAW-Fox Cities offers several Scholarship and Grant opportunities

• DSAW-Fox Cities Member Grants (examples: safety/therapeutic)  
• Technology Grant (Assistive/ Adaptive Technology) 
• National Down Syndrome Congress Convention Scholarship 
• Timothy Ditter Post-secondary Education Scholarships 
• I Can Shine (Lose the Training Wheels Program) Scholarship 
• Summer Camp Scholarship
• Performing Arts Scholarships (examples: dance, music classes)
• Sports Participation Scholarships (examples: team sports, individual sports, swimming, gymnastics, karate) 
• Visual Arts Scholarships(ex: art, painting, photography) 
• Adoption Grant 

DSAW-Fox Cities Programs and Educational Opportunities

• Our Summer Speech Enrichment Program is growing exponentially.  
• Speakers on specific topics such as behavior, life skills, inclusion, therapies, development, self-care, medical concerns, transitions, long-term planning and sibling supports.
• Social Events
• Volunteer and Leadership training
• New Parent Packets and medical professional information 
• Sponsor and facilitate Spread the Word to End the Word campaign in the Fox Cities
• Donate Signing Time kits to local schools
• Care Packages for families experiencing hospital stays
• New Parent Outreach through the First Call Program
• Classroom Awareness Kits