A Mother's Climb To The Summit

(and what she learned along the way)

Tonight I want to tell you about a summer trip we took with David's Cross-Country teammates and parents in June of this year.  Have any of you ever climbed Pikes Peak in Colorado?   It's what they call a "Fourteener" – a mountain that stands over 14000 feet above sea level...We're talking about a very big mountain.

There were 17 of us on the trip: 10 teen-aged distance runners and 7 adults.  We began planning our hike last November, led by one of the Dads who is an experienced climber with several Pikes Peak hikes already under his belt.

He helped us prepare for the climb.  We learned about external and internal frame backpacks and the pros and cons of each.  We talked about altitude sickness and how we could try to avoid it.  He made sure that we had the necessary clothing for every possible form of weather we might encounter – heat, cold, rain or even snow at any point along the trail was possible, and we encountered all of those conditions.  Once you set foot on the mountain, the only water available comes from creeks and must be treated before drinking.  Water is an especially essential element in the very dry climate and high altitude so we carried as much water as physically possible.  We packed healthy snacks to fuel our bodies through the climb, since the stress of the climb quickly depletes your energy.  Another very critical element of our preparation was our shoes.  Good, sturdy hiking boots, well worn-in.  Although I wore mine for months ahead of time, they still needed more wearing and I came home with 2 quarter-sized blisters on my heels to prove it.   Last but not least, even the best planning and equipment in the world will not replace good fitness and physical training for the journey.

We began our assent at the trailhead.   Immediately the climb was grueling with a hot sun, thin air and a steep and rocky incline. I carried a 40 pound pack on my back.   We hiked with our heads down, one step at a time, struggling to catch our breath in the high altitude.  Sometimes I would slip on the uneven ground and have to struggle to keep my footing.  There were occasional places where the trail would narrow and we had to pick our way through the boulders.   I looked forward to every rest stop, where we could take a few minutes to lay our packs down and eat a handful of nuts or enjoy a few sips of water.   The encouragement of my fellow hikers was invaluable and helped me believe I could make it up the mountain.

The 6.7 mile hike to the half-way point took us nearly 6 hours to complete.  The second half was even harder. I did not make it to the summit - thanks to altitude sickness - but I did manage to get above the timberline ¾ of the way up.  It was one of the hardest things I've ever done in my life.

So what does my little mountain climbing experience have to do with Family to Family Network?

When a child is diagnosed with a disability, that child and his parents find themselves at a trailhead, facing a hike up a mountain like Pike's Peak.

Their hike will be long – lifelong! - and many times arduous.  That family will encounter many lonely hours on the mountain, and face the difficult challenges of the hike:  The heat of financial hardships, the rain of grim prognoses from doctors, teachers and therapists, the cold of society's misunderstanding and misperceptions.  The day-to-day struggles of this family can take your breath away just as surely as trying to hike in high altitude.

Let's say you decided to take a hike.  Would you set off to climb Pikes Peak without some knowledge of where you're going and what you'll need? Would you follow someone up the mountain who had never hiked before or knew nothing about climbing a mountain?  I can't imagine that you would. Yet that is where kids with disabilities and their families often find themselves.  Many professionals – doctors, teachers, therapists, counselors - don't have adequate knowledge and training about the mountain unless they've hiked it themselves.  How can they adequately prepare these families for the climb?

That's where Family to Family Network comes in.   Family to Family Network is exactly what it says – a network of families who are climbing the mountain themselves and are willing to help other families successfully make the hike.

What does that mean? Families need information; Family to Family Network provides accurate information and relevant training that prepares them for the climb, whether they are navigating the rocky trails of school, healthcare, the health and human services maze or post-secondary options.  A current project, Texas Project FIRST provides online information and resources that parents and professionals can access 24/7.

Families need the right equipment; Family to Family Network provides workshops that show them what works best.  Our Connections and particularly the portfolio development training has been replicated all over the state and beyond.

Families need rest: The Family Friends program matches volunteers with families to be a friend, a mentor, or sometimes just to listen.  The support they provide is a welcome rest, just like slipping your pack off for a moment and enjoying a refreshing sip of water on the mountain.  Family Friends offers that voice of encouragement that helps parents take another step and to believe they can make the climb.

Families need support: many parents call Family to Family Network without even knowing what they need or where to start.  They find a voice ready to provide a bottle of water and to walk alongside them for a part of the trail.

And many families want to use their own experience to make it better for others; F2F's leadership trainings enable parents to not only succeed in their own climb but to turn back and help other parents up the mountain.

I didn't make it to the top of Pike's Peak; you'll have to ask David about the view from the summit.  But on June 18th I proudly stood just above the timberline of Pikes Peak, at 12000 ft. and surveyed a vast, magnificent view from way up high.   It was breathtakingly beautiful and one I could not have imagined in the earlier hours of the hike, when the brush was thick, the trail was challenging and it was all I could do to watch my feet take another step and another.  As I stood up there, I realized that the higher you get, the better the view!  And the empowerment you feel from having made it there is amazing.  But you have to get there.  Many never make it–lack of preparation, lack of the right equipment, or just lack of hope and encouragement to take one more step and then another.

I want that same view from the mountain for other kids with disabilities and their families.  The higher they get, the more opportunities there will be, the more vast their array of choices.   It's inevitable: Families whose child is diagnosed with a disability WILL face that mountain.   Family to Family Network knows the mountain, has hiked the mountain, and believes all children and their families deserve a shot at attaining the summit – or at least the view from the timberline!

There's a mountain waiting on many families.  The view can be spectacular, the possibilities great. When you support Family to Family Network, you offer families a hand up the mountain.

Laura, parent