Friday, May 23, 2014

PWS Awareness Day 23: Coping and Support Groups

Everybody copes with traumatic events differently.  Some retreat into themselves, others seek support from professionals, friends, and family.  There is no right way, and I know that my needs after Oscar's birth varied by the situation.  Early on I sought out one-on-one interactions where I could speak freely about how our life had changed, and I was easily overwhelmed by large groups where the conversations veered toward the minutiae of a daily life not touched by disability.

Many I know avoided researching the diagnosis extensively or talking with others when their child was first born.  I get it.  But I yearned to talk with other parents of kids with Prader-Willi.  I wanted to connect with mothers who were exactly in my spot, or only a few years down the road.  I wanted to know what our life would be like, even if the knowledge fueled my nightmares.  I had no interest (yet) in speaking to parents of a kid with Down syndrome, or cerebral palsy.  And certainly not to the mom of a preemie.  Those babies will get bigger and be fine, I thought.  (Yes, I was naive, and my dear friends who had preemies will read this and be glad they didn't know me then.) 

The day Oscar was discharged from the NICU, the hospital social worker handed me a stack of materials on Prader-Willi syndrome.  She'd already called our state organization and gotten the contact information for a local family who had a son who was nearly four years old.

I remember clearly the details of that first conversation.  The mom had just returned from a potluck and was throwing in a load of laundry while we spoke.  Her son was on growth hormone. He'd walked before the average age of two years old. He wasn't food seeking. He loved the playground. 

She didn't downplay the stress of raising a child with PWS, but still I felt the tiniest bit of the fear dissolve.  Laundry. Playgrounds. Potlucks. Her casual references to life beyond the diagnosis were a tonic that spread through my body.  My jaw unlocked, my shoulders relaxed, and for one brief moment I thought, "Maybe this will be ok."

Paul and I attended our first Prader-Willi support group when Oscar was only two months old.  We sat in a circle of cobbled together couches and chairs in a chilly classroom at a San Francisco school.  Fifteen or so other parents, many with young children, laughed easily one moment and shed tears with us the next.  The mom of the four year old was there, and we met another family we'd also spoken to who had a baby just three weeks younger than Oscar. Together we pumped milk into our floppy babies' mouths while the seasoned parents answered our questions.  A slender ten year old boy with PWS approached us with a stack of name tags and a sharpie and asked us our names.  He smiled, spoke clearly, and moved easily among the adults.  Paul and I looked at each other and thought, "We can do this." 

Those parents from that first meeting became our PWS family.   Over the years we organized fund-raising walks, went camping, planned vacations, had BBQs, celebrated birthdays, attended conferences, and shared IEP resources.  While our family hardly ever makes the support group meetings these days -- our three-kid schedule is too hectic -- some of those moms will always be among my dearest friends.  Our families meet for dinner, we squeeze in a coffee date, or we schedule long lunches (that may or may not include a glass of wine) and immediately reconnect no matter how long it has been. 

And that first mom, the mom of the then-four-year-old, is still the one who pulls me up from the bottom. The one I lean on the most.  I see her often, but last fall we planned a whole day.  We sat outside at a local cafe, the sun warming our faces, and dove into our long list of topics, taking turns.  We don't just talk about PWS, in fact we often try to avoid it, but the authenticity with which we discuss all things, including the challenges of raising our sons, sustains me.  That day, after covering only a fraction of our topics, we hopped in her car and drove out to the coast for a hike to the beach.  Sitting on the pebbly sand with the waves crashing on the shore, we snacked on cheese, avocados, kale, nuts and chocolate and just kept talking.  We tackled hard topics that day.  I acknowledged things I share with few.  But just like that first time we spoke when Oscar was two weeks old, I left feeling refreshed and strengthened, and grateful for friendship in the midst of trying to navigate raising a child with a disability while balancing the needs of myself and the rest of the family.

That beach. One of my favorite spots.


  1. Every blog post makes me want to read more. (I had to crack a smile at the bit about the preemie parents)

  2. Glad you smiled. (I have to weave in my own rigid thinking!!)

  3. My son was diagnosed with Down syndrome at birth and we found out about the same time that he'd need the heart surgery we thought he'd avoid. He was, I think, two week sold when we took him to our local Down syndrome group's annual picnic, and we started to breathe. Later when he was rehospitalized post-surgery, I resisted talking to other parents, and then leaned on them. I think it's so important to have somebody who gets it.

    1. I agree completely Sara. To just know that I am not alone with whatever issue I am facing helps me tremendously.