It’s that time of year. Again. The one where I make grandiose promises to myself that I am going to keep up with my writing and then, instead, I find myself buried under wrapping paper and baked goods humming Danny Elfman’s Christmas tunes until I am blue in the face.
It is that time of year where I will be damned if anyone ruins my holiday spirit (and people try; and if people don’t try, life tries). This year started a tad late but I am now surrounded by that same hopeful aura that shines its brightest when I smell a pine tree in my living room. The addition of Scar to my Christmases, especially herself being a Christmas time baby, has only brightened my light and made me more determined in my spreading of joy, at all costs. Even to my own sanity. And every year since Scar, I take more time to reflect rather than boast about the season. I think more about what I have given and received the past year than where I would be eating or what I would be wearing or how much money I spent. And this year, oh, this year. This year that reflection takes on so many different realms of my life, new ones too. And the color of the light has changed: to blue.
My daughter is autistic. Period. No more time for coming to terms or grieving or accepting.
I have had to reflect on that very thing this week, more than anything else. I also find that it bleeds into everything else and forces me into other realms without thinking. The friends I have had along the way. The support received and the love I have given. The things I have learned about myself along the way. The things I have needed to change or mature in order to grow. Two-thirds of 2016 I have spent plunged into the world of special needs parenting. Which is funny when you think about it because the other third of the year, I was still Scar’s mother. I was still taking care of the same child. But it was still so much more on May 11th when reality finally set in and altered the very course of our lives over a period of several hours. I think it is all finally at the surface now. It is reality. I know that things are not ever going back to any other life I had before.
And I reflect on the people who came along with me into this new territory. I reflect on those who didn’t. I ponder the situations in my life that may have been different had I not been a special needs mom and whether or not those outcomes would have ever been worth it.
I find myself saying who cares about other scenarios. This is my scenario. And I love living it. The things it has brought into my life far outweigh the things that have left.
It has become clear, however, especially at this time of hustle and bustle, just how challenging it is to be us. Myself with new skills and still so much to learn. My child with pretty much the same trajectory. Three steps forward, two steps back is it? Let’s just say Scar really doesn’t like change in her routine and that is basically the Christmas season’s MO. Yeah, it has been a long week, and it is Thursday. We have been sick on top of everything else. I woke up yesterday and sobbed that it was only Wednesday because I couldn’t believe there was still another two mornings getting to the bus. There was a Holiday party to send stuff in for. There were things to bake (and new traditions to make) as my only way to honor Yule when things around me weren’t slowing down any time soon. And there was a child that couldn’t sit still long enough to understand what I was doing as I baked. Instead she stripped down naked and stole strawberries from me for a half an hour while I tried to mix together cheesecake. There is nothing ordinary about my days, that’s for sure. And as I reflect on the very difficulty of our situation, I break down to my weakest form (human), particularly when I see her bite herself, or bang her head on the car seat. And I think I cried the other day the hardest I have cried in my lifetime. I likened it to how one must cry when their own parent dies. And of course it was in my car. On busy 5th Avenue. During the holidays. In broad daylight.
But then I stop crying and I realize how amazing it is that my life will never be ordinary, especially at such a magical time of year and with such a magical child. I remember that progress is not standing still, it is simply breathing. She has soaked up so much. She will continue to soak up more in the coming year in preparation for kindergarten and I need her to remain strong. And I need to remain strong. If it means there is a lull for a few weeks, bring it on. Bring on the naked thievery and hugging the Christmas tree and the opportunities to turn the meltdowns into face painting sessions or manicures. The progress she has already made in eight months is the only miracle that I can say I truly believe in. Scar spelling her first and last name over and over and asking for something to drink rather than taking it and using the word “yes” when she actually wants something. It is angels singing. It is my Hallelujah.