DSDN Provides Support in Tragic Times

There are certain life moments that cause you a moment’s pause to reflect. This month has been a reminder of how important our DSDN work is, even when it hurts.

Memorial gifts became part of what we do soon after we formalized our organization. We had already formed a loss group to connect families who had lost children to miscarriage, stillbirth, or childhood death, but we knew we wanted to do more to show those families how much we think of them. We wanted to honor their children and ensure they knew they would always be a part of our DSDN family. So, we began our Rockin' Family Fund initiative in late 2015 and have since sent out more than forty memorial windchimes to families. And it is hard. Each time our families experience a loss it is hard. Some quietly mourn and keep it close to the vest, while others share openly within their group and lean on the other parents for support.

We are over 3,000 strong in our membership now. And although we have lost nearly 50 little ones since we began, it never gets easier. No child ever passes due to having Down syndrome. It is generally a medical complication that may be more prevalent in our kids, and even though we follow their journey, there is still shock and devastation when the worst happens. That shock and devastation is somehow intensified when a child passes unexpectedly and without warning. This year we have had three losses within and close to our DSDN community of preschoolers whose time on earth was much too short. Nicholas, Remy, and Jude will forever be our Rockin’ kids.

On a personal note, I have grown to know and love so many of our 3,000 families, but the first group, our 12/13 Rockin’ Moms, are my original tribe. They are the women I leaned on during those first months after Owen arrived. They are the women I count on to celebrate the big and little moments. They are the women I know will lift me up on the days when I need it. They are where Unexpected came from. They are where DSDN was born. They are my people.

And since meeting nearly four years ago online, the 12/13 Rockin’ Moms have become my extended family. I think of their children as my own family, nieces and nephews scattered around the world. We've had meetups and play dates, phone calls and late-night texting. We truly know and understand each other. And that is why this month has been devastating.

Sending a windchime to a family we have known for four years was awful. Sending them is never easy, but this was particularly difficult. I have met them and held them in real life several times. I have followed their family through the last years and spent time at the hospital to comfort and pray. Adding the family to the loss group and taking on even an ounce of their grief was nearly unbearable. This isn't the way things are supposed to be.

We love Remy and his family so much. They will always be a Rockin' family and close to our hearts. And even though I never thought about these lowest moments as we started our journeys together, I do believe it is all for a reason and a part of our greater purpose at DSDN. We never know what our stories hold, but together we will face them together. We will be there as a safety net when our families need a soft place to fall. We’ve got them, always.

Thank you for considering supporting DSDN as we work each day to support new families through the highs and lows of this life. We can't do it without you.


#tragedy #death #child #downsyndrome

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