I am not really a support group kinda gal. When my first daughter passed away at 4 1/2, I struggled and I still struggle getting through the days with my broken heart. But, I didn’t join a bereaved parent support group. I didn’t think it would help, I thought it would bring me down.
So, when I found out about the DS diagnosis during pregnancy, I resisted participating in any DS support groups too. Even after she was born and we received a basket of goodies with the DSDN info in it, I didn’t look into it. I read books and articles to educate myself on DS, but didn’t reach out to others who were on the path before me.
I went to a consignment sale, a week after my daughter was born, to try to walk off the major swelling in my legs, and met a women, quite serendipitously, who had a child with DS—a 3 year old who had heart surgery at 7 months. She was introduced to me after I was sharing the diagnosis with the consignment proprietor. She said, “oh, Lauri’s son has Down syndrome and had heart surgery, you should exchange info”.
She gave me her number and encouraged me to join Rockin Moms. I nodded and smiled and went home, with no intention to reach out.
A day or so later, I was overwhelmed and anxious about my daughter’s heart condition, we had just found out it was worse than we thought. I dug through my purse and found Lauri’s number. I texted her. She texted back. We corresponded via text and she hooked me up with this group.
Since then, this group has been an amazing life line. A place where I feel secure and understood. A place where we don’t wallow in self pity, but lift each other up in love. I talk about you and your children like we have known each other for years, “our little friend Vera is back in the hospital; oh, sweet Mila is home from surgery; we need to see how Blakey is doing”! It’s such an interesting dynamic. Possibly, the best part about this group is that we are all experiencing the same stages along the journey, and that is undeniably helpful!
I am thankful for this group of moms. I am thankful for the many beautiful things in my life.
Cheers to all of you wonderful ladies, my comrades in arms, my safety net, my friends who are connected via the amazing-ness of technology and social networking!
DSDN now offers birth club style support groups to parents of any aged child/adult with Down syndrome. We are proud to support families and add a layer of connection for them as they navigate raising a child with Down syndrome. Click here to join: http://www.dsdiagnosisnetwork.org/connections