Differences

We've an appointment at Shriners later this morning, and FuXia will get a fixator adjustment.  We'll talk about the next surgery, currently slated for January 26.  This will mark the beginning of Stage 2 of the process.  Another family on this journey shared that they are waiting in line for surgery, most likely until this summer because of the enormous demand for Dr. van Bosse's skill.  And just like that, we're worked in for five weeks from now.  The unspoken urgency implied by that fact shakes me a little.  At the same time, I'm a little giddy, because I received my first impulsive kiss on the cheek from my sweet boy as I tucked him in bed.  That only took 16 months!

Shane and I went on a date Friday night, our first one alone in...yeah, I don't really know.  We talked about what the next six months might look like.  I am still marveling over the timing of our tax refund news.  Yes, this is exactly the time we need to climb out of old debt.  As we shed the debt of changing the house and buying--and largely restoring--a van, plus the year's medical bills, we step boldly into a new year of surgery and extended hospital stay.  I must pause in my conviction that others must be cautious in adopting multiple children with special needs long enough to realize that perhaps my conviction exists because it is the one necessary for me to navigate the family I embrace.

It struck me last month, as I worked to schedule YoYo's time in Baltimore, that his situation is so different from that of FuXia.  FuXia has a very obvious physical disability, one which branded him "deformed" for many years.  He has also been very visibly responsive to appropriate medical treatment, and his courage and determination have moved the hearts of all who know him.  He is verbally and physically reinforced daily, exhorted hourly, with acknowledgement of his progress and the strength of his character and the miracle of all he has overcome.  While he will likely struggle his whole life with physical challenges most of us will never face, he has also reaped a measure of reward and satisfaction--confidence--that most of us will never realize in our own lives.  Just a year ago, he would not look up into the face of another adult unless I told him to, and even then, only briefly did he comply.  Now, he initiates conversation, a bold smile dashes across his face, and he is learning to dream, to set goals, to imagine for himself what life might be like when he gets to the next phase of treatment.

YoYo has a far more life-threatening disability.  It is hidden from almost everyone in his daily routine.  While surgery offers the prospect of some aspects of normalcy, namely that of fatherhood, his body is unlikely to change much, and he will probably always rely on maintenance antibiotics and a specialized routine for his body to function.  The details of his condition are not widely known, because they involve the most intimate areas.  He has achieved a remarkable milestone earlier in his life than most of his peers affected by exstrophy, in that he can self-catheterize, describe his output, and tell me when he is running low on supplies at school.  He initiates grabbing a handful of supplies many times when we leave the house, just to make sure I have them.  His school nurse is amazed at his maturity in this.  But he will not have praise for this from his larger community that is nearly comparable to what his brother enjoys, precisely because nobody knows what he has to do or how incredible it is that he takes ownership of it already.  He is assumed by almost anyone who doesn't know his story to be "normal," and I often hear the question, "How were you able to adopt a boy from China who doesn't have any special needs?"  He has always enjoyed approval from others, primarily because of his beautiful appearance and vivacious personality.

Two brothers, both with significant special needs that could easily have cost them their lives.  One looks disabled, but has the prospect of getting "better," and enjoys the cheers of all who bear witness to his progress.  One looks "normal"--"beautiful," even--but has no chance (shy of spontaneous organ regeneration or unexpected medical breakthrough) of getting "better," and enjoys only the cheers of a select few who know the nature of his disability and his maturity in the face of it.  I turn this over in my mind, and marvel at the balance I see both boys navigate.  The balance I navigate is to help them know they are fearfully and wonderfully made, and that they must love their neighbors AS they love THEMSELVES.  The prayer I dare to hope is that they would delight in their own bodies and not fear dancing naked with silliness when alone, abandoned to the sheer joy of life.