was frazzled, nauseated, and painfully tired. I know I had a million excuses at my disposal and honestly thought that when things settled down, Alex would settle down as well.
The video we filmed that Christmas morning remains too painful to view; after all of these years I wish I could say I have developed some peace about that time in our lives, but I haven't. That video documents my denial. That video shows a child not grasping the concept of Christmas presents; taking no pleasure in the surprise of unwrapping. They show my son tantruming with every gift thrust upon him, too distraught to even realize that a really fun toy lay underneath. Of course, I now know that each Christmas gift was not a joyous surprise, but rather it was another painful and confusing transition with which my son could not cope. Not knowing what is inside those boxes wasn't exhilaratingly suspenseful for Alex; instead the unknown was absolutely terrifying to him. And it honestly did not matter what was underneath the festive wrapping, because in the coming months we would see that Alex had no ability to play with many of those toys I wound up opening for him that day.
It may seem odd that I want to recall, and perhaps even revere, those early and dark days with autism. My intent is not to stay there and wallow in that misery, but rather to build up a tangible reminder for myself of how far we have come. There is much more work to do - a lifetime of work lies ahead. But what cannot be denied is the progress we have made and what an interesting, gentle soul God has entrusted in our care, even if that soul is at times erratic in its presentation of that gentleness and fragility.
We were all uncharacteristically together in the car last night, heading out as a family to grab a very rare midweek dinner out and to pick up some hardware for a last minute project my husband decided to undertake. Alex had gotten himself torqued up about my poor rendition of "Santa Claus is Coming to Town" as we were heading out the door (apparently only those with recording contracts are allowed to sing rock and roll, he has decided). In the calm of the car, we listened to the "Christmas Shoes" song on the radio, followed by "Jingle Bell Rock" and "We Need a Little Christmas." I was careful to keep my singing to myself.
It was after the third song that Alex burst into tears.
Through those tears, he managed to say, "I just can't get over how beautiful that song was."
Thoroughly confused at what might be upsetting about "We Need a Little Christmas" I asked him what he meant.
"That ‘Christmas Shoes' song. I can't believe that lady is going to die and her son got her those shoes to look beautiful for Jesus!" This explanation made him cry harder and I am not ashamed to admit that I found myself crying along with him. Because when I think back on that first really difficult Christmas in 2000, the first post-diagnosis Christmas a year later, and how much heartbreak that we endured in those early autism years, I realize that once again Alex has bestowed another tremendous and unexpected gift upon me.
I need to remember the years of uncontrollable tantrums, of hitting and aggression. I remember the years of little functional speech. I remember the years when I wondered if Alex loved me or if he would ever be capable of understanding or feeling those emotions towards anyone else. I remember the years when my hugs and kisses pained him. I recall feeling grief that God or Jesus or anything spiritual would not be within his ability to grasp. If I don't recall these things, there is no way to truly appreciate how it makes me feel now to hear Alex become emotional about a song; to know that on some level he understands a young boy's desire for his mom to look pretty in Heaven. He is listening, processing and somehow relating those lyrics about a fictional boy to himself. And to me.
I would not have thought this possible eight long, painful years ago.
We have so much more ground to cover. We are still so very far behind. But how far we've come deserves reflection and reverence and perhaps there is no better time than Christmas for me to do just that. Last night I got another gift, in true Alex form. It may take him a lot longer than everyone else to understand - it may take him a lot longer for him to process what he is seeing and hearing, but I was reminded that it is possible for him to get it. I got a glimpse of Alex, the way he deserves to be all the time. The thoughtful and sweet boy I know he truly is, deep within an exterior sometimes riddled with odd and unacceptable behaviors. The gift is not so much in his tears or his words - but rather it is the hope that these moments bring to me when I get a glimpse of the possibilities. These are the moments that build to sustain us as we struggle to understand what is not yet understood.
Alex, it may take the rest of my life (and yours), but my Christmas promise to you is that I will never, ever give up. We will keep funding the science that will lead to the breakthroughs. We will continue to lobby the lawmakers. We will take on the insurance companies, and the school districts, and the ignorant people who stare and make foolish comments. I promise that we will prepare the world for you while we are preparing you for the world. I would not have chosen this for you. I will always question why this had to befall you. But I remain grateful that your struggles have changed me so thoroughly for the better. For this clarity, I owe you everything.