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.

Friday, May 8, 2015

YOU can make a difference today

To paraphrase a a friend... I don't participate in runs. I don't do a walk. But I am asking-asking you, my friends and family, to support this mission that is so near and dear to my heart.

Described so well here by my friend and DSDN colleague, Jisun, the Rockin' Family Fund is launching and I need YOUR support to help makes this incredible difference for new families with a diagnosis. We built this network mom by mom and are 1500+ strong in just 2 years.  I would love to build this fund dollar by dollar and raise enough funds to sustain this program for years to come. Every little bit helps and together, it will make a tremendous impact on families that already may face obstacles each day.

What we do...
"Congratulations and welcome to the DSDN family!" These are some of my favorite words that I get to send out each week as we welcome new moms and babies into our DSDN Rockin' Mom groups. Getting to know moms as they are just joining "the club" is one of the greatest parts of my work. Finding connections, easing their pain and worry, celebrating the baby they thought they would maybe never have - all thanks to technology and the support of lots of families around the world. We become a lifeline of support, especially for those that do not have a local organization or family close by, and we are thrilled to watch the journey that each family takes. With 500-600 new moms expected this year, this will be a worthwhile undertaking!

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.

While we hope and wish for the healthiest of childhoods for our kids, each day we are faced with the realities of heart surgeries, hospital stays, medical concerns in our groups.  Each day, moms are advocating for their children and working to be Dr. Mom in managing all that sometimes accompanies a diagnosis. It is a fantastic feeling to lighten a load or brighten a family's day, even in the smallest of ways, with a note or thinking of you gift while they may face medical uncertainty. Parents share with us how much this all means during some of the most challenging times.

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

Since last fall, we have lost a handful of babies and children in our DSDN Rockin' Family. I will never get use to seeing the memorials and announcements.  Our hearts ache with the mom every time. We rally around the mom every time.  We snuggle our loved ones closer each time. Whether the child was having medical complications or passed suddenly makes no difference; they were part of our family and are missed greatly.  We started sending memorial wind chimes to families with a loss late last year.  And although it breaks my heart to have each one sent, the appreciation and gratitude from families is incredibly worth it.  As we are all scattered across the country (and world!) we come together to mourn and support those with the deepest sadness among us.

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

We see a need.  Moms and dads that yearn for information and understanding, but cannot participate due to financial limitations.  Opportunities for learning at the local and national level exist in several levels and families should have access to these events.

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

What can YOU do? 
  • #sharethelove - Share the blogs, share the posts, share the fundrazr site.  Let others know we are out there and ready to help if we are ever needed.
  • Donate - Go to our Fundrazr site and give.  Imagine what we could raise to support families with thousands of Facebook friends and followers. If everyone donated even $5, we would meet our goal swiftly.  Remember we are registered 501(c)(3)- that means your donation is 100% tax-deductible.
  • Reach out- Help us create partnerships. If you know of an individual or company who may benefit from sponsoring the DSDN Rockin’ Family Fund, get in touch.
 My personal goal- To have 100 friends and family donate $21 each- will you join me?

Thank you for considering supporting this part of our mission- supporting each other is really what it is all about.