He made it.
This morning we awoke a bit late...but motivated to peel that boy out of that STINKING cast! It was so smelly, we felt we'd really encountered a sensory element of season of Christ's birth...the Yankee Candle company is not likely to produce the Nativity Scent (essence of ox, ass, and sheep.) A new experience, indeed for this family, and a new appreciation for the humble birthplace of our Lord.
We uncovered some painful pressure sores on his lower back. He also sloughed of an amazing amount of skin on his legs in his first two baths of the day. He was fearful, as were we, as he sat up for the first time in six weeks. His core is weak and unstable, but he gave us smiles here and there as he experienced some freedom.
I was very fearful as it appeared to me that his left hip (the one that has been twice operated upon) was not as good as his right hip. We braced ourselves for the worst, and loaded him up to engage in the full-contact sport of getting in front of a doctor at the local hospital.
Our dear surgeon was so upbeat and gave The Charmer a high-five as we made it to the 15th floor. He checked his hips first, and declared that the hips were STABLE. (For those of you who have followed this journey, the last time we removed the a cast for his left hip, his hip came out of the socket nearly immediately upon the leg being lowered to a normal position. It was entirely unstable.)
The declaration of "they're stable" brought forth a torrent of tears from me...I was so surprised by the amount of emotion...but I realized how we've been holding our breath for months...actually years since we knew that his hips were in such bad shape and there would be no walking until they could be stabilized. Then today, the revelation of a stable pelvis...and I felt remarkably unprepared for what it all means.
The surgeon sent us to x-ray which revealed that the left hip is not "as successful" as the right hip, but that the hips are healed and holding. That the hips are "going to be just fine." The second update was about the femur bones. Those bones take longer to heal than the hip sockets, but even the femurs are healing very well where a chunk of bone was excised from each thigh.
Our only precaution today was that he cannot STAND on his legs for 2-3 more weeks. He has to wait to STAND...
The discussion quickly turned from the hips and femurs to BRACES for his legs. Where will we get them? How will we pay for them? How long will it take to get them made? (Each part of this journey has been paid cash upfront. This is due to the fact that as an adopted child, living abroad, the only insurance we can have for The Charmer is one that excludes his pre-existing conditions. So anything related to Spina Bifida, scolisis, etc., is not covered by his insurance. We have been ASTOUNDED by the provision that has come, literally having just enough cash on hand...down to the last $15...needed to pay for his recent surgery!) So we need to find a skilled craftsman here in China to make the braces, inexpensively. Or, we need to find a company in the States, or perhaps a charitable hospital, or even a company in another country that will help us make the essential braces that will enable The Charmer to stand and WALK. Please be lifting up this next need as we wait the few weeks necessary to enable him to start standing.
Some are confused about whether or not he will be able to walk "normally." Due to this damage to his spinal column from his condition at birth, he does not have sensation or control of his legs. So, the braces would enable him to have a strong foundation on which to stand, and then he will use his hip muscles and core muscles of his abdomen to lift and move his legs forward.
He looked up at me today when the surgeon said, "he has to wait 2-3 weeks to begin standing" and his face registered the awe at this new stage in his journey. He asked me, "is he talking about ME, STANDING?"
This boy has soldiered on through immense difficulties that I think perhaps would have broken me. Months of bedrest, horrific traction, bone infection, massive doses of antibiotics, loss of any activity outside of his home...and he still has the courage to go on, dreaming his dream of walking.
I want to be more like him.
I want to be tough, and willing, and fearless.
He continues to show us the way.
30 December 2014
10 December 2014
3 Weeks Down
Time goes very slowly when you're lying on your back.
Three weeks post-operation...24/7 lying on his back...and most days, he still smiles at us! Some days his frustration builds to the point that he makes irrational demands and accusations, "I want a doughnut! Give me a doughnut" (never mind we're in China, where donuts are not plentiful!)
"Get two police men over here, in hats! I want to get out of this place!"
"I told you, that I am hungry!"
"Why are you soooo mean to me?"
We really try to be loving and patient. The other kids are getting to exercise their tolerance and are learning to be understanding of another who is confined, in pain, and frustrated. This, of course, is not a natural response from any of us. Often we want to tell him what to do with his doughnut demands! But, I think that compassion is growing in all of our hearts.
It is easy when we are able-bodied, and in control of where we go and when. We simply have no sensitivity or understanding for the incredible frustration that comes with physical limitations. Maybe we've tasted it for a season of life; illness, broken limb, or incarceration ;) , But as soon as we have our physical freedom and mobility again, the memory fades away.
Just last week I spent hours searching for information on how to use public transport in Thailand for those who use wheelchairs. In the West, before I had a son that used a wheelchair, I honestly never gave such a thing a moment's consideration. But now, I have to travel to Thailand as several kids passports and visas are expiring and we have to attend a conference there later in the month...so I will leave with the "affected passport" kids, and spend several days in the heart of their capital city, in a small guest house...trying to find ways to get The Charmer around with us. Even taxis are not really an option, given our number and the wheelchair may or may not collapse enough to go into a trunk. The number of skytrain (public transport system) stations that are NOT wheelchair accessible outnumber those that are, by 10 to 1. Yet, without the Charmer in our lives, none of us would have ever thought of this when traveling to a new city, without the use of a private vehicle. Just trying to get from the airport to the guest house...is like a massive jigsaw puzzle!
I know that compassion is such an admirable character trait. I often ask for more compassion in my life, because naturally, I don't think I am very compassionate. I suppose that walking this journey with The Charmer grows all of us, but perhaps me the most? When I'm tired, cold, and just want a moment to myself...and then I hear demands to bring the police to the house, with hats, right now?! Oh, how I wish I could say that I embrace those opportunities to grow in compassion. It is rather more like chewing leather; a slow and distasteful task.
I remember a teaching, at sometime in my past, that we are like stones lying in a riverbed. Each soul closest to us, are like stones lying there together while the water washes over us. However, we are not just gently touched by the water, but, in fact, we are forced to rub and jostle against those stones lying beside us. At times, I have felt literally battered by all the little stones and their rough edges that lie about me. Greater still, what friction have I caused in their lives with my roughness? Yet the end result of lying in that stream bed together, grinding against each other, is that we become smooth. The rough edges are worn away.
That is one great benefit of living with The Charmer during this difficult time. My callousness is slowly growing smoother as self-centeredness gives way to compassion, as the river of our lives together flows by.
Three weeks post-operation...24/7 lying on his back...and most days, he still smiles at us! Some days his frustration builds to the point that he makes irrational demands and accusations, "I want a doughnut! Give me a doughnut" (never mind we're in China, where donuts are not plentiful!)
"Get two police men over here, in hats! I want to get out of this place!"
"I told you, that I am hungry!"
"Why are you soooo mean to me?"
We really try to be loving and patient. The other kids are getting to exercise their tolerance and are learning to be understanding of another who is confined, in pain, and frustrated. This, of course, is not a natural response from any of us. Often we want to tell him what to do with his doughnut demands! But, I think that compassion is growing in all of our hearts.
It is easy when we are able-bodied, and in control of where we go and when. We simply have no sensitivity or understanding for the incredible frustration that comes with physical limitations. Maybe we've tasted it for a season of life; illness, broken limb, or incarceration ;) , But as soon as we have our physical freedom and mobility again, the memory fades away.
Just last week I spent hours searching for information on how to use public transport in Thailand for those who use wheelchairs. In the West, before I had a son that used a wheelchair, I honestly never gave such a thing a moment's consideration. But now, I have to travel to Thailand as several kids passports and visas are expiring and we have to attend a conference there later in the month...so I will leave with the "affected passport" kids, and spend several days in the heart of their capital city, in a small guest house...trying to find ways to get The Charmer around with us. Even taxis are not really an option, given our number and the wheelchair may or may not collapse enough to go into a trunk. The number of skytrain (public transport system) stations that are NOT wheelchair accessible outnumber those that are, by 10 to 1. Yet, without the Charmer in our lives, none of us would have ever thought of this when traveling to a new city, without the use of a private vehicle. Just trying to get from the airport to the guest house...is like a massive jigsaw puzzle!
I know that compassion is such an admirable character trait. I often ask for more compassion in my life, because naturally, I don't think I am very compassionate. I suppose that walking this journey with The Charmer grows all of us, but perhaps me the most? When I'm tired, cold, and just want a moment to myself...and then I hear demands to bring the police to the house, with hats, right now?! Oh, how I wish I could say that I embrace those opportunities to grow in compassion. It is rather more like chewing leather; a slow and distasteful task.
I remember a teaching, at sometime in my past, that we are like stones lying in a riverbed. Each soul closest to us, are like stones lying there together while the water washes over us. However, we are not just gently touched by the water, but, in fact, we are forced to rub and jostle against those stones lying beside us. At times, I have felt literally battered by all the little stones and their rough edges that lie about me. Greater still, what friction have I caused in their lives with my roughness? Yet the end result of lying in that stream bed together, grinding against each other, is that we become smooth. The rough edges are worn away.
That is one great benefit of living with The Charmer during this difficult time. My callousness is slowly growing smoother as self-centeredness gives way to compassion, as the river of our lives together flows by.
Subscribe to:
Posts (Atom)