Sweet child, light of my life, I promise to never allow any fear to stop me from unlocking all of the universes that exist in your brilliant and beautiful mind.
December 5th into December 6th, 2012, I slept a half hour the first night you became part of our world. That was combined. I listened. Listened. It was recommended that I sent you to the nursery. That I had the next few years to put you to sleep and care for you at night. That I can spare myself the first couple of nights. The nurses will bring you for feeding.
I refused the offer. I wanted you with me the entire time. I had waited for you for so long. And I spent that night listening. Your father slept next to us, you in your little roller cube. You woke up every 30 minutes but that was okay because I was listening. I heard every breath that exited your nostrils. Eventually by the middle of the night, you cried so much more each interval, you ended up in my arms. I sat my bed up and cradled you.
You had no idea what was happening. You went from the womb, your womb, to a mixed cotton receiving blanket that at least 100 other babies had been bundled in before. You lived in darkness for 40 weeks. I had to ensure you knew that not only was I with you in that darkness, but I would be with you through all the darkness – and the light.
We stayed in the bed that way until about 5:30am after your father left for work. We had a corner room with two big windows. I looked out to snow flurries and orange NYC street lamps. I waited until the nurses did all of the poking and prodding, and after almost 48 hours of little to no sleep, labor, a C-section, and no food, I stood up and took you to the window so that you could see the snow.
This was so that you can understand that even in my weakest moments there is always strength for you.
May 15th into May 16th, 2016, I laid beside you and I listened. You were snoring. A couple of times you spoke a word or two in your own language. What does she dream about, I wondered. You snorted once, and I could not help but giggle (sorry).
You coughed and suddenly sat up in your sleep screaming for five minutes and then rolled over. At least this time it was only five minutes. Maybe it is because I was right there. Or maybe it was just that this particular night terror was thwarted faster by Bug from Sarah and Duck, as you often call to him towards the end of your nightmare. Who knows? But I listened. And I continued listening until I knocked out, not even realizing that sleep had occurred until you were nose-to-nose with me, smiling and saying “Wake up, Mommy” over and over again.
I think there were many times, even in the very beginning of Scar’s development, where I used the phrase “the A-word” because I honestly could not even think it. I wish I could go back two years and ask that version of me what I was so afraid of. I guess it could quite possibly just be the act of admitting that something could be up with my daughter. Because right now, I am fairly certain I have hit every stage of grief in no particular order and for no reason because there is nothing to grieve.
One could argue that there is. A future plan that may not occur the way you pictured it. The quote unquote normal steps it takes to get from Pre-K through senior year in college. The summer mornings you are going to spend dragging her back and forth to evaluations with strange people in big buildings who are going to try to get to know her the best they can instead of sitting in the playground watching her FINALLY play with other children.
But even as I think of all of these things, I wonder who they are really for. In the long run, of course, they are meant for her but really they are my plans. She is going have her own plans for happiness and on her own time and in her own way. I just have to listen in those periods of darkness. I have to carry her through all of the hard times with all the strength I have.
I will walk through fire, even when it really burns, even when I want to cry out, even when my arms shake from holding you above the flames.
We don’t know how severe or mild this is. We are guessing a lot more mild than most. High-functioning. I have read articles for days. I worked up the courage to watch YouTube videos of children with autism. I cried during every one of them. Sad tears for the techniques the mothers are faced with in order to prevent self-injury and the realization that those techniques will become my reality. Happy tears for the older ones who speak proudly about what having autism means to them and who show nothing but pride in themselves and all of their accomplishments. I have learned and recognized so much in the past few days both through reflection and one-on-one contact with Scar and it is all making so much more sense.
I have taken a few different tests, surveys, what have you. Spoken to several people very familiar with the autism spectrum, some on a very personal level. It reassured what I knew in my heart all along but it would not leave my lips. There are moments where I feel so grateful that there is some sort of answer to all of my late night meltdowns in my bathroom, or my inability to grasp why my child was one of the few that needed a leash attached to her backpack. There are also moments where I remember the things that are identical to the children in those videos or what I have read in all of the literature and I kick myself for not starting sooner. But I suppose the reality is this:
- She is brilliant.
- She is vibrant.
- And now we know that she is unique.
I think those are the three things that are going to truly get us through the next three months of evaluation. Not simply me being there and being strong. But all of the power she has within herself that we just need a special set of keys to unlock.
As we unlock each door, she will be able to understand a little of how to play pretend with her toys. She will want to build castles with her blocks or sit still long enough to make a blanket fort with me. She will be able to communicate with us better and the tantrums will become easier to handle. Her vocabulary will progress and the repetition will become a little less. She will tell me about all the colors in her imagination that only she can see.
We are not planning on beating this like it is something to be cured. We plan on creating new ways to learn based on what she does differently. We want to defy odds the best we can and win the battles we can win. Whatever ends up being our adult daughter will be, but the energy needs to be pumped into the NOW to ensure it is the best we could have possibly done for her. She will still be on the spectrum. She may still need extra special attention in some areas.
She will still be my baby from the morning of December 6th staring down at the dancing flurries landing on the Brooklyn pavement.
She will always be Scarlett.