Monday, August 29, 2011

Road Trip Day 3 - Climbing A Mountain...Literally and Figuratively

Day 3 will be a multi-day post because we have so much cool stuff to show you and talk about. We got up on our third day and had breakfast to give us the strength for the hike of a lifetime.

Most people who know me don't realize the battle that goes on inside my head when it comes to Sam and his multiple medical issues. Outwardly I appear calm, creative and in control...that is my goal...but the process of getting there is one that can inspire me or overwhelm me, push me to new heights or make me struggle to stay out of the really just depends on the day. Everyday I choose to love Sam for just being Sam but everyday my emotions are a whirl of thoughts of am I doing enough, am I doing too much, what else can I do, what therapies, social circumstances, outside help, further medical intervention should I look at to help Sam. These emotions are usually kept at bay with prayer and letting Sam lead the way...but that's on a good day. Sam's NACD program gives me priorities which help with the focus, his therapists work on areas we discuss and I only work with people that take the time to really get to know Sam, to understand his wants, needs, communication and behavior. On a bad day when Sam has a pain episode severe enough to make him cry I struggle between anger at what is causing my child to hurt, frustration at not knowing if we are doing everything possible to help Sam and pain, gut-wrenching pain when I know my child hurts and I can't make it go away. But these hurts are not just because of physical issues. These same emotions hit me when Sam struggles at learning, when he tries to communicate with another child or person and they turn away and decide he's not worth the effort, when I see Sam wanting something...a friend, to physically do what other kids do, to just do what I take for granted each day and never think twice about. In Sam's short life he has struggled to do the simplest of human tasks...Sam has struggled to breathe, to walk, to talk, to communicate, to think, to process, to learn but he has never struggled to love unconditionally, to inspire me with his attitude and persistence, to test me to be the best person, the best Mom I can be. It is then up to me...if I can meet the challenge.

After Sam's pain episode, I gave the worry and hurt to God. I got angry enough to make a conscience effort that no matter what...Sam will see a waterfall and he will continue to enjoy his road trips however we have to make that happen. I don't want to take anything more away. The was still in Sam's hip and my heart and soon to be in other parts of my body...but as Mother Theresa says: "I have found the paradox that if you love until it hurts, there can be no more hurt, only more love." I was about to prove her theory.

We entered the beautiful Smoky Mountain National Park and we were on a mission. During my research I had purchased a great book "Scavenger Hike Adventures" by Kat and John LaFevre. This book details each trail and provides nature scavenger hikes for the trails within the park. This is a great book for homeschoolers or anyone who wants to get even more out of their hike and help educate along the way. The book details why it's a great trail, where the trail is, about the trail, how long is the hike and things to hunt for. The book described the beautiful 85 foot double waterfall which is the prize at the end of the hike. The trail was paved in the 1960's and is considered easily accessible for strollers and "do-able" for wheelchairs. The trail is 1.3 miles to the waterfall and is considered a gradual ascent of only 300 feet in a mile. That all sounded as they said "doable" and the girls planned to take on another trail after we finished this one.

The book gives great information on the local plants, trees and animal habitats. We packed our backpack with water and granola bars and headed to the trail. Parking was at a premium because everyone seemed to have the same idea we did. We started up the trail and quickly realized that a gradual ascent of only 300 feet in a mile sounds great in a book but is very different when you are walking it and pushing a wheelchair...but we were determined. The trail had many potholes and patches that were not so easy to navigate with a wheelchair and we found ourselves not only pushing but lifting Sam over the tough spots.

Brooke and Danielle liked to get a running start up the steeper areas of the trail. Yep, I followed behind taking pictures...of course.

Sam would yell to Brooke, "Run, Brooke, Run!" and then he would make panting noises which Brooke would then reply, "Yep, I bet this is really tiring you out Sam."

Now it was Danielle's turn to run and push. I myself liked the slow walk and push idea, but I respected their enthusiasm and energy.

There were great places to take a break and have some water, so many cool rock structures, streams, roots, trees, plants and wildlife. We all enjoyed the rest stops.

Sam liked to look up and see the tall green trees and the blue sky and clouds peeking through!

So much beauty to admire and inspire!!

Mom's turn to push and give the girls a break.

Not the most flattering pictures of my backside, (note to self, continue exercise and weight loss program while homeschooling this year!!)

We tried to enjoy the beauty around us while catching our breath from the upward climb.

We could hear the falls and Sam began to say "Almost there, almost there." What I can't really put into words is the look on Sam's face when we got to the top of the mountain and he got to hear and see the waterfall. This picture almost captures it.

His eyes were kind of glossy and although he couldn't express it in words, his face let us all know how much he appreciated the effort it took to get him there.

The bridge led to the center point of the two falls. It was slippery on the rocks so we didn't attempt to go into the waterfall as others did. Just seeing it and hearing it was enough for Sam.

The waterfall was gorgeous and the sound was comforting.

The girls decided to continue their hike down the side of the waterfall to get pictures of the lower falls. Sam had fun yelling to them to be careful and he just kept smiling.

Brooke got some great pictures while at the bottom of the falls.

As I sat and watched Sam, I thanked God for the beauty of his creations, for this wonderful little boy that takes me to places I may have otherwise missed. I am grateful for him pushing me to go further than my comfort level, challenging my thoughts and inspiring me to always think of the possibilities instead of the limitations.

The girls enjoyed the challenge of hiking further down the waterfall and they felt the same sense of accomplishment and joy that Sam and I were experiencing.

My words don't always express the sheer beauty of the area, so I will borrow some words from some famous people.

"Climb the mountains and get their good tidings. Nature's peace will flow into you as sunshine flows into trees. The winds will blow their freshness into you, and the storms their energy, while cares will drop off like falling leaves."
- John Muir

"Above all do not lose your desire to walk. Everyday I walk myself into a state of well being and walk away from every illness. I have walked myself into my best thoughts and I know of no thought so burdensome that one cannot walk away from it. But by sitting still, and the more one sits still, the closer one comes to feeling ill ... if one keeps on walking everything will be alright."
- Soren Kierkegaard.

"When man ventures into the wilderness, climbs the ridges, and sleeps in the forest, he comes in close communion with his Creator. When man pits himself against the mountain, he taps inner springs of his strength. He comes to know himself."
- William O. Douglas

"What a joy it is to feel the soft, springy earth under my feet once more, to follow grassy roads that lead to ferny brooks where I can bathe my fingers in a cataract of rippling notes, or to clamber over a stone wall into green fields that tumble and roll and climb in riotous gladness!"
- Helen Keller

"Those who contemplate the beauty of the earth find resources of strength that will endure as long as life lasts."
- Rachel Carson

"Do not feed children on a maudlin sentimentalism or dogmatic religion; give them nature. Let their souls drink in all that is pure and sweet. Rear them, if possible, amid pleasant surroundings ... Let nature teach them the lessons of good and proper living, combined with an abundance of well-balanced nourishment. Those children will grow to be the best men and women. Put the best in them by contact with the best outside. They will absorb it as a plant absorbs the sunshine and the dew."
- Luther Burbank

"Wilderness has been characterized as barren and unproductive; little can be grown in its sand and rock. But the crops of wilderness have always been its spiritual values -- silence and solitude, a sense of awe and gratitude -- able to be harvested by any traveler who visits."
- David Douglas

" ..... to be whole and harmonious, man must also know the music of the beaches and the woods. He must find the thing of which he is only an infinitesimal part and nurture it and love it, if he is to live."
William O. Douglas

It struck me as sad that people felt they had to leave their mark on nature's perfect picture.

We got together for a group photo before we attempted the journey back down the mountain.

I was so proud of Brooke and Danielle for taking on this challenge with me. Here are two teenagers that without question understood my want and desire to allow Sam the opportunity to see the waterfall. We knew that the path was not going to be easy but then we only needed to look at Sam for our inspiration. We persisted and we overcame the obstacles and never for a moment felt like giving up. Another life lesson taught by a little boy that struggles with the spoken word but never fails to teach us so much.

In the next post I will include more pictures of our journey down the mountain and a trip to an amazing aquarium. Good night everyone!!


  1. This is a beautiful post. I found you on the Communicating Partners group and I am really glad to have found your blog. Thanks!

  2. Love it. Looks like you all had fun, can not wait to read the next post.

  3. Beautiful.
    My favorite part:
    "As I sat and watched Sam, I thanked God..."
    This is the gift God has given me in Chloe, as well.

  4. What a beautiful post. All of it. Love the pics below of your view from the cabin too - such beauty!

  5. Hi,

    I'm sort of rushing and I didn't see another means of contacting you so I'm using this comments section...sorry!

    I would love to talk with you briefly about your experience with NACD, as I'm considering the program for my soon-to-be 2-year old daughter. She doesn't have DS but she's missing at least half of one of her Chromosome #21. It's so rare there's no "official" name for it, but I call her a cousin to DS. Please email or call me at your convenience. Thank you!