Sam and Diane

Friday’s miles were for Sam, though I wasn’t quite sure at the time. Sometimes I go out knowing exactly who I am honoring on the day of my run, and some days I wait until I get to the trail and let it come to me. Friday was the perfect example of how that happens.

Tony had suggested a new trail, one that I haven’t run on yet. I was a bit apprehensive at first. Tony runs at a faster pace than I do and this time we were going to run together, which I welcomed, but it still made me a little nervous. My mind quietly raced with questions. Was the terrain hilly? Can I make the six miles at his pace? Will it be busy? Should I ditch my music? Most importantly, will I have to pee?

Get out of your head“, I hear myself say. “Remember, it’s about the letting go and riding the wave“. I was looking for that sweet spot, the one between being present and not trying to control it all. Trusting.

When I first started out I passed a heart-shaped leaf and smiled to myself, “Anna is still with me, maybe this one is for her too”.  Tony stops, and without asking, he hands me his phone so I can snap a shot, he’s such a good guy.  Really, how could I resist, here is this big ole’ heart-shaped leaf, steady and strong, laying in the middle of a high-traffic trail. It seems to whisper, ” I may look fragile, but I am big and strong“. From the looks of the leaf I am sure that it doesn’t go unnoticed. It makes me think of Anna, once again.

As I catch up to Tony I slowly let go of wanting to know what is ahead and just run, convincing myself to just have fun with it.  I coach myself through it,  “I’m not going to turn around, oh, puhlease..of course I’m going to go forward, I can’t stop now, who knows whats ahead- hard, easy, good, bad, I still need to get my six miles in.” That’s all it takes, I know in that moment that this is definitely Sam’s run…and Diane’s.

Diane’s journey with Sam started 19 years ago. At that time she was on her own quest into the unknown. Diane and her husband, Tony, were faced with multiple diagnosis’s for Sam at the age of six months. They were told he was Developmentally Delayed, and that he had cerebral palsy and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified, which meant he was on the Autism Spectrum).

So when Tony coaxed me onto a different path, one that was parallel to the trail we were on, I thought of Diane and Sam. Seemingly, how we all start at the same spot but then somewhere along the way we come across two paths, not always having the option to choose the one we want to take.

I stand there for a second, faced with the two paths, both leading me in the same direction, covering the same distance. One is clearly more traveled. It also appears to be a bit easier, not as bumpy, I don’t have to dodge low branches or trip over rocks, and it doesn’t look as isolated. I follow Tony’s lead, albeit reluctantly, onto the less traveled path. I trust that I will be fine.

As I forge ahead on this unlikely path, Diane’s words echo in my head. Her insightful and honest sharing has clearly stirred something in me. She talks of grief, expectations, disappointment, love, happiness, hope and faith. She is strong, loving and honest. Sam is strong, loving and honest. They are the real deal. They are making a path for others to follow.

Diane shares from the heart, and I imagine her words will resonate with so many of you, as they did for me. Her life’s journey with Sam deserves more time, more space, here I share with you a brief summary in her own words,

Our story as a mother/child duo began 19 years ago when I was pregnant for the first time.  The pregnancy was uneventful until 31 weeks when I was placed on bed rest and hospitalized for two months.  After a C-Section, we were so relieved to finally hold this precious child.  We thought everything was normal until he was a few months old and was not hitting the developmental milestones that we expected.  By 6 months, the doctors were very concerned and sent us on a quest to solve the mystery that is Sam.  After countless appts, tests, procedures, we were told that Sam was Developmentally Delayed, had cerebral palsy, and had PDD/NOS, which simply means he is on the Autism Spectrum.  I was told when he was little, that having a child with special needs is like going through the grieving process over and over again, yet each time, it passes more quickly and hurts a little less.  I have found this to be true.  Sam has far-surpassed our expectations- yes, he walks, rides a bike, talks, but No, he will never live independently or be able to support himself.  On his IEP, we have the label “Severely Multiply Impaired”, but we just see this sweet, innocent, loving young man who will always be our little boy.

After the grief and, lets be honest, the disappointment, comes the balanced place teetering between hope and acceptance.  Finding the right balance of these is a lengthy process.  Of course, we all need to have hope for our children- that they will learn, improve, achieve but if we spend all our time and energy on the hopes, then we never truly enjoy them for the beautiful, unique person God created them to be.  We also have to accept them for who they are and love them unconditionally.  There is peace in this phase of acceptance.

Sam has taught me more than I have taught him. I have learned to take care of myself by exercising and taking time for things that give me balance in my own life.  I have learned that I can’t do it alone.  I need God to take over when I am exhausted.  I have learned to stay connected….to friends, to family, to my church and most of all to God.  He gives me strength when I have none and a peace that is not my own.  We have been blessed beyond measure throughout our journey together.”

As I read Diane’s words, I hear her come full circle -grief, peace, beauty, strength, acceptance. She also talks about knowing when she can’t do it alone and finding ways to take care of herself. She reminds me to trust the path before me, to honor the path I’ve been on and to find strength in knowing when I can’t do it alone.

In the end I made the six miles. Tony and I finished our run, not without hills, bumpy terrain,  and a few coyotes chasing their dinner. Though with all of that also came beauty, unexpected artwork and flat stretches that gave me momentum to keep moving forward. 

As we were coming to the end of our run we crossed a bridge, it reminded me of a quote I found recently- quite fitting for anyone that is looking to gives thanks for the bridge that has carried them over swift currents and rough waters.

Praise the bridge that carried you over.” -George Colman

Cheers to you Sam! I have no doubt that you will continue to win the hearts of many with your charm, kindness and loving ways. Thank you both, Diane and Sam, for giving us a glimpse into your life’s journey, may your bridge always be in sight.

To learn more about Cerebral Palsy and PDD-NOS please follow the links below. Thank you!

Cerebral Palsy-

http://www.ucp.org/

http://cerebralpalsy.org/

http://www.cdc.gov/ncbddd/cp/index.html

PDD-NOS/Autism Spectrum Disorder (ASD)

http://www.autismspeaks.org/what-autism/pdd-nos

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

Developmental Delay

http://www.med.umich.edu/yourchild/topics/devdel.htm

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