A saddened little face looks up at me, his thick black eyebrows raised towards each other just above his nose, parted only by the wrinkle of concern running down his forehead. His face speaks without the slightest movement on his lips, inquisitively, hesitantly, he looks at me. His eyes open to the pain in his heart. Pain not only in the physical sense but also that of 8 years of hard life, loved ones that came and went, loved ones that let him down, loved ones that parted this earth for heaven above, loved ones that left him in our arms. For months he has endured daily cleanings, of his 30 open pin sites. These sites are often tender with puss and dried excretions that must be cleaned with a q-tip to prevent infection. After an often 45 minute cleaning he endues adjustments to the struts on his halos. Some days it goes well, some days he can be distracted with movie in front of him and only winces minorly at the discomfort, and some days it just too much for his emotions, and the physical pain unleashes months of uncertainty and changing scenery, changing faces, changes in his life. He cries, he sobs, he allows that scabs on his heart to bleed and he releases the pain that comes from deep within not just the external suffering of his contorted feet. Sebastien is a child like no other. He comes alive with movies, voices, faces, or actions will jog a memory and he blesses me with it. He shares those things dear to him, things that scare him, things that make him mad, he shares about his grandpa and the horse that he had.. how him and his brother used to ride it, before it fell in the water and grandpa had to kill it. He loves horses. He talks about the police, how he liked when they walked by his house. He cheers for them as they rush in to save the day on “Home Alone 3”. He talks about his mama, sometimes the memories are foggy, he remembers some things one day, and something the next that doesn’t quite match it, but it is always something he shares with pride and confidently believes his mother makes the best rice, the best spaghetti, and the best soup. He is a talented artist and takes delight in his meticulous creations. He has a beautiful imagination, he can pretend almost anything… anything except being free from his chair. His legs are a burden, his chair, though he can race faster than any scooter, a prison. His arms are muscled and strong to turn the large wheels where he wants to go, and to give him a small freedom, to lift himself from his chair to his bed and back again as he pleases, WHEN he wants. NO waiting to call someone, no waiting to be carried, he can rely on himself for this small task, for anything else he must wait… wait for a urinal, wait for an arm to carry him to school, wait for a hand to lift his chair over the rain trench in front of the house, he has learned to be patient, in ways that we can’t even understand. He asks when the pins will come out, when he can use his feet again, when he will be able to walk again, run, kick a ball, stand tall enough to throw the basketball high enough to reach the hoop… he wants to know if there is an end in sight, but we have no definite answer for him, we don’t know how quickly his feet will heal, how many months we’ll flip on the calendar before physical therapy can begin, and so he waits. And he dreams… of what a day that will be. Today a glimmer of hope came true and his dream was given more fuel to keep it burning. Today Miss Vikki picked our little boy up at 7am butterflies fluttering in his empty stomach ready for the anesthetic, something he talked freely about the night before, repeating, “It won’t be scary,” “I’m not scared.” convincing himself of what was to come. This afternoon a groggy little boy came home to us… halos off, pins out, heavy plaster casts in their place from his thighs to the tips of his toes. He knew he was going to get casts but in his mind they would not be as bulky and big as they were, and he was self conscious, he knew his peers and friends would be his support no matter what, proof of that was the cheer that arose from the playground after he shared the news of his upcoming surgery the evening before, the kids marched around him as a hero in the parade congratulating him up and down the yard. But he was fearful of what the visitors would say, and he didn’t want anyone to write on them, but the doctor had told him everyone would sign it. He was still groggy and weak from the anesthetic, and the fact that he could not lift the weight of his casts to reposition his legs overwhelmed him. BUT he perked up at the promise of a movie, joyously brought his buddies up to watch with him, giggled as he sipped bubbly sprite and it tickled his nose, and clapped his hands at the slapstick humor in the film. At the end he looked down troubled again, though the halos were off and the pins had come out, one step closer to his dream the realization of their awkward appearance put a damper on what should have been relief and delight. Something simple would fix that… something that most 8 years old take for granted, but not this one, he’d wait months for this… JEANS! A pair of old size 6 blue jeans and a couple of white socks, it had been an impossible thing with his giant halos, things he’d only thought of in the weeks before, slipping them on relief filled every corner of his face, grinning from ear to ear, his adorable jagged smile sparkling, “Now I am ready, Molly. Take me to see EVERYONE!” His path will be long and full of bumps ahead, his trials will continue to burden him, his chair to imprison him, but for now a small dream has come true… to be like every other boy, and wear any clothes he chooses.. especially, “long long jeans… like Rilinxe’s”.
Proverbs 4:20-22 (NLT)
20 “My child, pay attention to what I say.
Listen carefully to my words.
21 Don’t lose sight of them.
Let them penetrate deep into your heart,
22 for they bring life to those who find them,
and healing to their whole body.”
Posted on Thu, December 29, 2011