The Best of Humanity Part One

As I walked around the hotel banquet room, I chose to eavesdrop on the conversations I was overhearing.

One woman has her arm around another mom and is rubbing her back. I struggle to hear their conversation. I overhear some words that I recognize…..”IEP, full inclusion, school.”

Some conversations are less serious….unicorns, Down syndrome awareness shirts, and prickly pear margaritas by the lazy river.

Then there are the comments that signify the entire reason we are here.

“We are finally meeting. I feel like I know you, but now I can actually hug you. I am so glad you are here.”

When you walk around the room, it’s like these women have all known each other for years. There are hugs. There are matching shirts. There is SO MUCH laughter, and no doubt, that soon, there will be tears. To quote one of our keynote speakers from the weekend, Brian Donovan, “The best of humanity is in this room.” I am finally with my tribe at the 4th annual Rockin’ Mom Retreat, and this year, there are close to 400 other moms here with me.

For those of you unfamiliar with this annual retreat, I wrote a blog post about my experience last year. I detailed my introduction into the DSDN community and My Rockin Mom Family. This year, I felt like my emotions weren’t as close to the surface. Sienna’s diagnosis wasn’t as raw or fresh. My goal was to binge on as much Down syndrome related info as possible. I wanted to utilize every resource to get Sienna and I through the year.

But those emotions can be tricky. They can sneak up on you, especially when you’re with a group of women who just GET IT. You have no idea how freeing it is to be with these women. I love my mom circle outside of the Ds community. I am lucky to have an incredibly supportive village, but I am not going to lie. It can feel isolating when you are with a group of moms who have typical children, the same age as your child with Ds, and a conversation about milestones comes up, which it inevitably always does. They have no idea how hard my kid has to work, for what their kid did without even trying. I don’t spite them for that, and I never want to rob them of those conversations. But being with this group of women, experiencing the same struggles as me, is an annual recharge that my mom soul needs.

I arrived in Phoenix with a fellow Rockin mom from Pittsburgh. Mary’s daughter is 4 months older than Sienna. We live 15 minutes from each other and had never managed to get together for a play date with our girls. I was so grateful for this experience to bond with her.

When we entered the registration area, I was immediately greeted by some familiar faces. I was so excited to say hi to some old friends. As I gazed around the room, I noticed similar reunions happening everywhere.

I began my hike around the information booths. I soaked up as much as I could. I spoke with a woman about Sienna’s ABLE account. I bought some (a lot of) advocacy shirts for the family. I learned about an organization that gives scholarships to college to young adults with Down syndrome. The resources are abundant and I stockpiled on them. As I was standing at one of the tables, I spotted a friend. This particular Rockin Mom has been through hell the past few months. Her son, Wyatt, was diagnosed with leukemia back in June. I know some of you have seen some of his posts that I have shared. Please pray for this sweet boy, and his incredible family. It was great to just give her a hug and hear about what their family is currently facing. I thought about writing about their struggle, but it’s not my story to tell. It’s Nichole’s. If you are interested in their journey, you should follow them on Facebook here.  I was so happy that she managed to get a few precious days away with our tribe.

After a couple cocktails and dinner, we all settled in the banquet room. Bethany Van Delft was our first keynote speaker. Have you ever heard of the Moth podcast? The concept behind it is interesting. As our society has become more dependent on devices, we have gotten further away from talking. We never just sit around and tell stories to each other. My grandmother used to sit on her front porch every night with her neighbors chatting. The moths would fly into the light fixtures as they sat out there, hence the title, The Moth. Well, Bethany Van Delft was a storyteller on the Moth, and her story ended up going viral. I highly recommend viewing it as there is no way I can relay all the power behind her words and the impact it made. Click here for her story. 

Courageously, she disclosed something to which many women can relate, yet often remains unspoken. Sometimes, we picture motherhood a certain way and when it doesn’t turn out the way we expected, we can spiral. I know I portray an image of a mom that has it together, but there have been many moments spent in an emotional abyss. I don’t always share the dark moments spent plummeting, but I should. Bethany struggled with her daughter’s Down syndrome birth diagnosis, and she bravely chose to bare her soul and share her pain. It impacted her marriage, her friendships, and her ability to relate to everything. She was angry at everyone in her life. She was resentful of pregnant friends and friends with typical children. She confided the details of her journey into a place of acceptance to us. We all have unique journeys. That is what has brought us together for this retreat. This is a judgment free space to share our hardships, our celebrations, and darkest moments. Some of us accepted our child’s diagnosis immediately. Others are still trying to get there. One thing is certain. This is the place where you can bare your soul, and know that someone will always be there to pick you up.

What Bethany said helped me release some of my own guilt. I have had some dark moments on my journey. I remember getting a phone call from my best friend, weeks after Sienna was born, telling me that she was pregnant. I lied and told her that I was happy for her. I hung up the phone and cried. I know that makes me sound like a terrible person, but I was resentful and jealous. I no longer viewed pregnancy as that warm and fuzzy place it had been with Haley. I had been through 4 miscarriages and a surprise Down syndrome birth diagnosis. Everyone else got to have their happy ending. Meanwhile, my life and vision for my family had been snatched from me. I was in a nightmare and everyone else was living their fairy tales.

It haunted me. I was surrounded by it. I remember carrying newborn Sienna into Haley’s preschool and there were moms with their typical babies all around me. There were pregnant women everywhere. I wanted to let them in on the secret that things could still go wrong. They might think that the baby they are carrying is perfect, but there are no guarantees. I was spiraling into a dark hole. I remember being at Haley’s first preschool playdate. Sienna was only a few months old, so her features weren’t obvious and no one knew. In the beginning, I hid it when I could. At some point, during this play date, the conversation amongst the moms worked it’s way to prenatal testing, and it was at this point that I felt the need to point out the inaccuracies of this testing. It was at this point that I chose to share Sienna’s diagnosis. What happened next surprised the hell out of me. The walls of loneliness and isolation that had been stacking around me were knocked down. You see, no one cared. Instead, they wanted to help. They gave me information, resources, and told me that Sienna was beautiful. They became my village. I broke free of the pain, and realized that the hurt would get better. And you know what? One of these same moms just told me that she was pregnant, and for one of the very first times since Sienna was born, I was genuinely freaking happy for her.

My point is this. We all will have our epiphany moments on this journey. Everyone processes things at different speeds and in their own ways. It’s magical to be in a room of women all traveling this same path. We are all here to give each other the tools, support, and love that we need to be the best moms to our kids. We are a band of moms that need each other.

Bethany inspired me to be brave. I am going to be more transparent and share some of my pain. I am going to be more vulnerable, more real. Here’s a truth. I love my child and there is nothing I would not do for her, but there are days I wish we could just be like other families and go on a play date instead of a therapy session. I wish we could just go into Target without getting the poor you looks or the she’s god’s special child looks. That’s okay. It’s okay to feel that way. Thank you, Bethany for inspiring me to open up about that. Like I said, those emotions can be tricky. I ended up saving my complete emotional breakdown for the next keynote speaker, Brian Donovan. His story and more details about the amazing connections I made will be featured in the next blog post.

Down Syndrome Awareness month is coming. Get used to hearing from me more often. My goal is to do a post a day. Yikes!

Also, we will be walking in the local Down Syndrome Association of Pittsburgh Buddy Walk on October 14. Please consider joining Sienna’s squad and walking with us or you can make a donation to our team here.  The DSAP offers resources that ensure Sienna’s success in the future. This past year, Sienna has needed nutrition support, physical therapy, developmental therapy, speech therapy, visits to countless specialists, therapy and support at the Children’s Institute, appointments with the amazing folks at the Down Syndrome Center at Children’s Hospital of Pittsburgh, and of course wellness checks with her pediatrician. As she grows, so will her needs. We rely on the community around us to offer support in many forms. The resources available to our family are all thanks to the Down Syndrome Association of Pittsburgh.  It’s for that reason that we participate in the Buddy Walk.

And just to inspire you to donate: