I’m back from the first annual Rockin’ Moms Retreat, and I’m not even sure I can do it justice to describe it in words. What a powerful, emotional weekend. And fun…oh yes, fun! So much fun that I’m already counting the days/weeks/months until the 2016 retreat, which will be held in Dallas. I already can’t wait!
Anyway, let me try to encapsulate what was one of the most amazing weekends I can remember…
I’ve heard discussions of whether friendships formed online are actually friendships in the real world. And this weekend I found out what I had already suspected: Yes, they can be. On Friday afternoon and evening, as Rockin’ Moms from all around the world (literally! Most were from the U.S., but we had at least one from Canada and one from Australia) poured into the Hilton St. Paul/Airport/Mall of America, over and over again women flew into each others arms with a squeal of “Oh my god, I can’t believe I’m finally meeting you!” And instantly, we sat and talked like old friends—not like people who had only ever met online. All day we had been posting pictures and updates on our social media sites about where we were and when we’d be arriving, and when we were finally all there, it was like two years of friendships poured into the Hilton bar in a warm, happy bubble of delight. Laughter, squeals, giggles, happy tears…we had it all.
We spent Friday evening filling in all the friendship spaces that hadn’t been filled in two years of talking online, as well as meeting new friends from Rockin’ Moms groups other than our own. We put faces to names and names to faces. We talked and laughed and stayed up way too late—as one must do at an epic slumber party such as this!
Bright and early Saturday, we headed to the conference room for the day’s events—several speakers, some service projects, a raffle, an auction, some pampering. We spent the better part of ten hours in that room, and it was intense.
I hadn’t necessarily expected intense. I had expected to go to the conference to recharge, relax, and bond with ladies I’d been talking to online for two years. I hadn’t expected to spend parts of the day in tears, feeling as if my heart and soul were lying bare.
But I’m not sure that intense is a bad thing. It was hard; it was emotionally exhausting. But maybe we need that sometimes. Maybe it’s good to face the hard parts sometimes and come out feeling emotionally wrung out but ready to take a deep breath and keep moving on.
For me, the emotional exhaustion started early. The second speaker of the morning was a woman who is doing an outreach program similar to what I do for our Down syndrome organization, but in a different state. The goal of her presentation was to inspire moms to see how we can give back to the community based on our experiences with it. This I wholeheartedly agree with. However, in telling how she came to do this outreach program, this mama had to share with us the story of her son—because it is her son who inspired her work. And when she talked about delivering her son, I literally felt as if my stomach was rising up into my chest, pushing the air right out of my lungs. Because her story was so similar to my delivery with Sam. And I thought that hurt had healed, but it was clear to me right then that it hasn’t. It was as if I had picked off a scab that wasn’t ready to fall off yet, exposing a still tender, still healing wound.
She talked of how in the hospital, her son’s heart rate in utero dropped to 70 beats per minute, and she was told an emergency C-section would be required to save the baby. That was the last thing she remembered hearing before they put the mask over her face and knocked her out for the surgery.
I had always known that things were dire during my labor with Sam. But I’m not sure I knew how dire. I know that decelerations of a baby’s heart rate are not uncommon during labor and are not necessarily something to panic about, as long as the heart rate returns to normal. But I also knew then that when my baby’s heart rate started sounding all sorts of alarms and the labor room filled with people running around and barking orders, there was a problem. And when I turned to look at the fetal heart-rate monitor and it said 34 beats per minute, whereas before it had been hovering between 140 and 150 beats per minute, there was a real problem. They turned the monitor away from me when they saw me look at it, and I never knew how low it went. Sometimes I wonder if it dropped to zero. I’ll never know, and maybe it’s good that I’ll never know. In my heart, I knew that 34 beats per minute was not fast enough for my struggling baby. But somehow, a tiny piece of me thought, “Well, maybe it’s not that bad.”
But to hear this mother say that her baby’s life was in danger when his heart rate dropped to 70—twice what Sam’s was—it was as if I was told right then and there, “He almost died. He came so close.” And it just hit me hard.
My ending was happy, of course. After being raced down the hall and told they didn’t know whether Sam was going to make it, the heart-rate monitor started picking back up when they moved me onto the operating table. I don’t know how long it was from when his heart rate dropped to when it came back—I would think maybe two or three minutes, maybe five tops—but I know it was absolutely, without a doubt, the most terrifying, painful time of my life. Getting his diagnosis of Down syndrome was nothing compared to realizing that he might not even make it out of my womb alive. And although I thought that pain had healed, it became clear to me on Saturday that it hasn’t. It should have, in logical terms—my story ends happily, and so why should that memory still hurt? But it does. I have no answer for it, but it still hurts. It brings me to tears. And it’s bittersweet, because as much as it hurts, it also never fails to remind me of how very, very lucky we are. Every day with him is a gift. So it is with any child, but it’s even more profound when that gift was almost taken from you.
So I was on shaky emotional ground after that talk—even though that mother, like me, got a happy ending. Then the next talk was from a mother I knew of—and although I had never met her, I knew her story did not have a happy ending. Her beautiful daughter died last year—in fact, I wrote a blog post about her, despite having never met her. Her death rocked our Down syndrome community—partly because it happened the same week as the deaths of two other children in the DS community, but also partly because this sweet, sweet toddler had fought through an incredible number of medical issues and prevailed every time, and then she died right when she seemed to be on the mend.
Watching her mother speak, I felt…anguished. And also honored. Because this mama, whose grief was written all over her face, chose to stand up in front of we hundred mamas and share her most personal grief and feelings, as she described to us her beautiful daughter’s life and death…and how that inspired her in her own service project for the community. “We are parents without a child,” she choked out. “And this is a way we can parent.”
Watching a mother grieve in front of you is…like nothing I can describe. I don’t think anyone in the room held back their tears. I think we all wanted to go give this mama a huge hug and cry along with her, but she was standing up at the podium, so we just had to sit in silence and cry along with her as she poured out her heart. It was gut-wrenching. And yet at the same time, there was beauty in it—in the way this mother chooses to honor her daughter’s life.
The speaker that followed her had a happy ending to her story—her son was critically ill and in fact the hospital he was in had asked the family for their last wishes, and the family had made plans for his funeral. Miraculously, just when he was expected to pass away, he began to recover. He is now a thriving three-year-old. But the mother shared with us his story and how her own grief over her dying son had driven her to the brink of suicide—literally. As in, she had the materials with her and had driven to the spot where she was going to end her life, because she was convinced that God wanted her to sacrifice her own life so that her baby boy would live. Before she actually completed the act, she realized that her grief had led her to a belief that was undoubtedly untrue, and she stopped herself. But hearing her talk about how her son’s tremendous medical struggle had pushed her to that point was just…I don’t even think I have words.
The point of these speakers wasn’t to showcase grief or to bring us all to a point of emotional ruin, by any means—rather, all of these women have gone on to make significant contributions to the Down syndrome and disability communities, and that was the point of their presentations. But as I said, in getting to that point, they had to share what brought them there—and what brought them there was almost unspeakably painful. For all of us, I think, it just brought up so many emotions. I have been lucky because Sam’s health has been very good, but there were several mothers in the room with medically fragile children, and I suspect the effect was all the more profound on them.
As hard as it was, though, I think the emotion may have been good. I know that I don’t really let my emotions out that much, and it’s probably good for me to let them go once in a while—to cry unabashedly in front of someone and say, “Damn, that just really hurts my heart.” And the thing about the Rockin’ Moms is, there’s always a shoulder to cry on. Anyone with a young child with DS can join a Rockin’ Moms group, but what makes a true Rockin’ Mom is a woman who’s got her other mamas’ backs. When one of us goes through something hard—related to Down syndrome or not—the Rockin’ Moms are there to lift her up and say, “You’ve got this. And we’ve got you.”
Some years ago, I described how having Sam felt in my heart—as if my heart had broken open and never really healed, but that it was good that it had never healed, because I now feels things more deeply, whether it be sadness or happiness. One of the speakers alluded to the same idea, saying, “When I got my son’s diagnosis, my heart shattered. But then I realized that so much light came in through the shattered pieces—it took shattering for the light to really shine in.” Exactly. I couldn’t have said it better myself. That same mother showed a news story that had been done about their family’s story, and her husband was interviewed in it. He talked about how at first he was crushed by the diagnosis. “But,” he said, “it didn’t take long for me to realize how lucky I was—how lucky was I that I got to parent this amazing child?” Exactly again. I often walk around feeling like I’ve won the lottery. And that may sound illogical to some, but I truly do—how lucky am I to have two amazing sons who were nothing like what I expected, but who are even more incredible than I would’ve ever known? What did I do so right to be given the opportunity to parent these boys?
One of the Rockin’ Moms had put together a soundtrack for the weekend, and one of the songs on it is a lovely song called the “The Luckiest.” That pretty much sums up how I feel—and what was reaffirmed for me this weekend. I am the luckiest. I don’t know how I stumbled into this amazing life, but somehow I did…and I do consider myself so very, very lucky.
After the soul-wringing that was the speakers, we had a pampering session that included chair massages, cookies, crafts, and so on. And that helped us take a deep breath and move back into a good space, where we could have fun. And then we drank.
I’m kidding. Well, sort of. We had a happy hour complete with shuttle buses to and from the restaurant, so no one had to worry about being a designated driver. So those of us who wanted to cut loose and have a few drinks were able to, and those of us who preferred to stick to water and soda could certainly do so. I’ll leave to your imagination which road I chose. 😉
The happy hour was held in a restaurant in the Mall of America—supposedly the largest mall in the U.S. This seemed like pretty much any mall to me, except for one thing: the center of it is an amusement part with a ton of rides, including three roller coasters, a zip line, and a log ride, among others. And so what do wild and crazy Rockin’ Moms do when given a free kid-free night with other wild and crazy Rockin’ Moms? Well, some of us decide to ride the roller coasters. Wheeeeeeee!! Needless to say, that was a blast!
And after happy hour, some of us didn’t feel like letting the night end, so we went dancing. I headed back to the hotel around 1am with a couple of other mamas, knowing I had to get up early the next morning for the walk, but some wild-and-crazy mamas stayed out until 3am and had a serious of hilarious adventures, well documented in a secret Facebook group. 🙂
Sunday morning was the 5K run/walk, sponsored by IRun4. Many of the Rockin’ Kids have runners through IRun4, so it was very cool to have them put on the event. I walked the 5K, which was along a dirt path through a nature preserve, and had a great time with the other walkers. The only downside was that all the medals were gone by the time I got to the finish line, and I really wanted my medal! But I’m in good with the Rockin’ Mama who put the run/walk together, and she assures me she’ll send me a medal in the mail. 🙂
As hard as parts of the weekend were emotionally, I can’t even tell you how much fun I had and how glad I am that I went. I cried a lot, yes…but I also laughed more than I can remember laughing in a long time—and that’s saying a lot, because my house is pretty darn humorous most days! And it was so good to get to hug these mamas in person. I’m not even a hugger in general (just ask Chris!), and I was so glad to finally get to wrap my arms around these friends and make a physical connection after so long of knowing them in the virtual world.
Oh, and hey–we made the Minneapolis news! Click here to see the story!
I come home refreshed, reinvigorated, and ready to resume my role as mom. It was just the chance I needed to regain perspective and to really cut loose for a few days. Thank you, Down Syndrome Diagnosis Network, for putting on this awesome event for us! I can’t wait to be #rockinit2016 in Dallas!