A Dark Cloud On What Should Have Been A Bright Moment!

In the last post you saw how much Sam loved the pool...but I knew we had one more surprise for him....the ocean. There is something so calming, so inviting, so refreshing about the ocean...it is another one of Sam's happy places. On the evening of day 6 and every evening thereafter I decided we would end our day relaxing by the ocean.

As I planned this vacation...my mind couldn't help but think about the possible concerns and problems walking on sand or navigating the beach would cause for Sam. Perthes has collapsed the ball on top of his femur completely, leaving Sam without a functional hip. It is difficult for anyone to walk in sand but without a functional hip the sand could prove to be more than Sam could handle. And yet...a part of my mind and heart didn't want to keep Sam from something he loved. We got him up a mountain...we can do the ocean.

We took the short 5 minute walk toward the ocean...let me clarify...me walking while pushing Sam in his wheelchair. As we got closer you could hear the waves hitting the beach. Sam turned to me and said "Mom...sound??" as he put his finger next to his ear.

I smiled, "Well, what do you hear Sam?"

"Mom, OCEAN??" as his smile grew bigger and bigger.

"Well, let's go check it out."

Sam began to clap and raised his hands up and to the sides, "I coming ocean!!"

Yep, this was the right decision. Sam was going to see his beloved ocean.

Sam continued to smile, leaning forward in his wheelchair, "Almost there, almost there!!"

He could hardly contain his excitement and as we came over the boardwalk...well...I think this picture says it all.

From his perch he could see all along the beach, to the left...

...and to the right.

Sam yelled to the kids jumping the waves and I knew that at some point he would want to do the same...but for the first couple of nights he was happy to just sit back and watch.

.

I loved to watch his expressions as he watched the waves.

He would often turn to me and smile and I knew that even though he couldn't express it in words he was telling me "Thank You, Mom...you know how much I love this place and how much I love you for bringing me here!"

And at those moments...when my heart would melt...I would thank God for encouraging me to take another road trip...to take the opportunity to create more moments like this. I put the worries aside, the challenges at rest for another day and I looked into those beautiful blue eyes and found all the courage I would ever need.

But..as I stepped back to take this next picture...

I couldn't help but feel that something wasn't right. As I look at Sam sitting in his wheelchair my mind reminds me how much Sam loved to play on the beach and that his most favorite thing in the world was to run along the water's edge. I begin to develop my plan for the next evening. I have to at least try. Each night we return Sam edges closer and closer to the steps that lead to the beach and I know his mind is thinking the same thoughts.

Just down those steps and I can be like those people under the umbrella and I can be like those kids jumping in the waves. I can do it.

So the next night I bring a big blanket, sand toys and a very excited little boy back to the beach. As I take off his shoes and socks he smiles and says, "Mom, Sam beach?" I smile and say, "Yep, it's time for Sam to go on the beach."

He waits at the top of the stairs as I spread out the blanket and then slowly hanging on to my hand and the rail he makes his way down the steps. Right foot always leading while leaning toward the right side. My heart breaks a little as I think of the hours spent teaching Sam to go up and down the steps in a beautiful left/right cross pattern. Sam's right foot touches the sand and he stops to wiggle his toes. I encourage him that if he takes just 10 steps, he can sit on the blanket. Sam smiles and moves forward slowly.

He rewards me with another big smile and begins to play in the sand.

And then I notice that he stops playing and he begins to look longingly toward the water...

His expression changes from happy, to sad....to determined. I hear him begin to talk himself through his next plan of action. "Sam...ocean...feet...water...do it....go". I take a deep breath and know that there is no changing this child's one track mind and determination. I'm guessing he's thinking I got this far, the water is only a few more steps away...about 40 and without a functional hip it may as well be 5 miles. The doubts I'm feeling are quickly brushed away as Sam begins to stand up and heads to the water. He takes two steps and then calls for my assistance. I ask him, "Are you sure you want to do this". He answers, "Yes, I go" and I know that we are on a mission and I just pray it turns out okay. After one more stop, Sam makes it to the water.

I see a little smile and he yells, "WE DID IT!" I begin to take a few pictures through my tear filled eyes to remember the moment.

Sam loves the feel of the ocean washing over his feet but....

As I watch him looking out over the ocean I see an expression of determination return and I know that Sam is planning to attempt the one thing he loves doing the most...running along the edge of the ocean. You can just see the wheels turning, the sand is harder, I got this far, just a little run...and in a blink of an eye he was off.

I knew he just had to do it and I also notice how far his footprints have pronated out and take a quick picture before the waves sweep his prints away.

Sam is running along the edge of the ocean, another dream fulfilled.

But then he stops as fast as he started and yells, "Mom, come here, go home" and I can hear and see the pain that this fulfilled dream has caused. The little boy who was just moments before smiling now has tears rolling down his cheeks, his body is leaning forward and to the right, he is holding his left thigh...and my heart breaks again. Damn you Perthes, why can't you just let him enjoy a simple moment on the beach??? I run to his left side and begin to provide support under his left armpit. He catches his breath and asks to sit down. In my heart I know if he sits here I won't be able to move him and the tide is not going to help the situation. The blanket which isn't that far away is my best bet for a resting place...but from here to there now seems like miles. I encourage him to take a few steps and after three he begins to yell "No, go home" and pulls away from me. Sam doesn't express pain like other children, he doesn't say "Ow, my hip hurts" he changes his position or he gets mad or frustrated...this is what pain looks like for Sam. The people on the beach begin to notice but when they see Sam has Down syndrome the looks go from concern to pity. I want to scream this has nothing to do with Down syndrome...this is a child in pain. If you saw a typical child limping and crying would you run over to assist...but instead they all continued to stare adding to Sam's volume and making me more frustrated and angry. Sam continued to walk a few steps and then broke down, leaning heavily on me and each time we stopped my heart hurt just watching the pain he was enduring. A 10 year old boy should be able to walk or run on the beach...is that too much to ask?? I wasn't sure what was stronger my need to yell at God or to ask for his assistance. When we got close to the blanket Sam collapsed on to his stomach. He lay face down, trying to catch his breath but not moving anything below his waist. I continued to rub his back as I ran through my mind a plan of how I was going to get him off this beach, in his wheelchair and home. I decided our best option is to wait it out, let him rest. I knew I could call Danielle and Brooke to bring the sling I had brought on the trip. The three of us could carry him up the steps and into his wheelchair if we had to. Sam began to breath slower and steadier, he raised his head and his flush cheeks had now paled. He asked for a sand toy. I moved the blanket and gathered them in a small circle around him and he began to play but I couldn't help but notice that he never moved anything below the waist for over 25 minutes.

His cheeks were flushed and his eyes a little swollen but my Sam was coming back.

He would yell every once in a while, mad at the sand for causing him pain.

But then he would return to playing and digging in the sand.

And after about 15 minutes...his smile returned.

As I sat waiting for Sam to recover my mind got caught once again in the trap that threatens to pull me in and swallow me whole. I have come to terms with Down syndrome, brain injury, apraxia, dysphagia, respiratory/immune issues, bi-lateral conductive hearing loss but Perthes...Perthes is a part of this journey I could do without. This diagnosis has completely changed Sam's mobility, something we worked hard to regain after the brain injury and something we all take for granted until we don't have it anymore. This diagnosis changes our every day. Sam has good days, bad days but each and every day is different. I can not determine what makes a bad day, how bad a day is and what Sam will and won't be able to do. Sam handles pain through position adjustments and listening to his body. He doesn't ask for medicine, he doesn't tell you it's a bad day, he doesn't even say his hip hurts...but as his Mom, a woman who spends 24/7 with him, I can tell you what pain looks like. I believe Sam wakes up every day and decides "this is what if feels like to be Sam Mayer today" be it with more or less pain. When Sam has a bad day his limp is worse, his behavior is worse, his attention span is low and he puts himself in traction or lays down a lot. On a good day Sam walks a little more, limps a little less and doesn't have to lay down as much. But on this road trip, doing what he loves to do, showed me just how much pain is involved and why I have chosen to homeschool him again. I can work with Sam on a good or bad day. He can change his position as needed, he can work with me even when he is in traction...but even with that said...I still hate this diagnosis.

Sam finally sat up and said "Go home". With assistance he made it to the stairs, up them and into his wheel chair. I gathered our stuff, brushed off his feet and put on his socks and shoes and we headed home. He walked slower than usual up the steps to the house and immediately put himself in traction once he got to his bed. I asked him if he would like me to put some oils on and he said "Yes". As I rubbed in his hip and thigh he would tighten his expression but would return to a smile when I was done. He drifted off to sleep, completely worn out from his experience and I prayed that he would have a restful sleep. He occasionally moaned during the night and was stiff and sore the following day but he continued to smile, he continued to laugh and he continued to amaze me.

Sam continued to want to go to the beach each night but now he preferred to stay in his wheelchair and observe from above the beach.

And he continued to call out and wave to the 3 pelicans that flew past us each night.

Sam continues to struggle with hip pain and discomfort. I hope to get a new x-ray done within the next week or so. If no bone growth is seen we will contact Dr. Standard, a Perthes specialist in Baltimore for a 2nd opinion. Sam doesn't have 4+ years to wait to grow bone, we need a lot of bone and soon. I don't know what else can be done but I won't give up, I can't...Sam is depending on me and we need to explore any and all options. Good night everyone!!!