At 1:15 in the morning, I woke.  Tossing and turning, this was rather unlike me.  Mostly, I sleep straight through the night.  Awake, I got up, readjusted, tossed, turned, tried to settle down, all to no avail.   I wound up, lying there, staring at the sweet face that is my son while he slept peacefully, oblivious to my quandary.

There was utter silence, except for the crickets outside, quietly marking the passage of the summer night with the steady tempo of their chirping.  Suddenly, I realized I forgot to give my son his evening dose of seizure medication.  I have to wake him and get him to take three capsules worth.

I go to the kitchen, empty a Gogurt into a bowl, trudge back to the bedroom, open the capsules and mix them up with the purple colored yogurt.  I attempt to wake him gently.  No go.  He continues to sleep.  He rolls away from me, burying his head under the pillow.  How bad can I feel?  This is pretty bad.  I nudge him.  I call his name.  He moans.  I tell him he has to take his med.  He seems to understand.  I half sit him up.  His eyes are still closed.  He eats.  He takes in all the med and rolls right back over to sleep.

I look at him, lying there.  His arms are so thin.  His pajama top has twisted and pulled above his tummy which protrudes ever so slightly.  There is barely any fat there.  I worry that he doesn’t eat.  He seems so delicate, so fragile.  I vow to try harder – to do better.  To get more, and better, food inside him daily.  Easy to do when the light of day is not slapping reality into my face…

This was the first time I forgot to give him his seizure med before bed.  I swore right then it would be the last.  I sat up and programmed my phone to alert me to his evening meds with an alarm every day on an unending cycle.  I am tempted to peruse the apps on my phone, but know there will be no sleep at all should I go there.  I put it back down and turn off the screen.

I can still hear the crickets but their chirping seems so faint now.  Almost gone.  Perhaps, they had come to wake me, to remind me to give my son his meds.  What is wrong with me that I forgot?  Too lazy that night?  Failing to follow my own routine.  Routine has its purpose.

My mind is full.  I cannot sleep.  Will the 30 plus students in new class at the new school be too much for him?  Will the private school for which we are on a waiting list still call?  Did they not call because they don’t want another child with autism?  Will he flourish?  Will he refuse to do the work?  Will he do the minimum?  More?  When he goes to the restroom alone with the other kids, will they bully him?  Will he be emotionally hurt and not be able to express it to me or not want to?  Will he be happy?

When he awoke one morning, not too long ago, he was crying.  Not melting.  He was sobbing, quietly.  I came into the room and his head was buried in his pillow.  His body moved with the sobs.  He cried out for me.  I held him.  He sobbed, saying,“Mommy to hold you.”

It was not a time for questions.  He held me tight.  I held him tight.  I told him I loved him.  I talked about all the fun things we would do for the day.

I will never know if it was a bad dream, a sad thought, or a fear.  He wouldn’t have been able to tell me anyway.  I was there.  I comforted.

After a long while, once he was in the tub, splashing and playing, he began to talk.  He only spoke of the present moment.  He cannot, for the vast majority of things, recount past events in an abstract way, like a dream or a feeling.  No.

He was able to talk about turning his wind up bath toys and what colors they were in the moment.  He asked where we were going, (Him:  “You’re going to ….?”  Me, modeling a correct sentence:  “Mommy, where are we going today?”  Him:  “Mommy, where are we going today?”) even though he already knew.

We live very close to an area that is high enough up that you can see for miles.  There are mountains and valleys, so many connections and gaps.  We drive past this every day:

It seems like it is a daily analogy for my life.  It’s such a strange thing to be right next to your child, holding, washing, comforting, feeding, touching your child and be separated by a barrier so great I might as well be watching events unfold from the next mountain top, or in some sort of dream.

To be comforting, yet never knowing why.  To be giving him medication, not knowing if he is awake, or whether, by my lapse, he had a seizure between 11 p.m. and 1:30 a.m., when I realized my error.  It’s strange to know he has seizures I will never see, by their very nature, yet not knowing if he feels them, or knows what happens to him when he has one. He can’t tell me.

Is it strange to love and know I am loved in return without each understanding many things about the other?  It is a whole different way to love someone.  Communication happens all the time – just differently – with gaps.

In the end, mostly, I know the love.  The love is always there, a strong, constant bridge to our communication.  It’s in the leaning on my arm, the draping of his leg over mine, the request that I watch him as he plays, the need to know where I am.  It’s reinforced by the words, “I love you mommy.”

It is in the ease of that love, that knowing and contentedness, that I can fall back to sleep and dream of the day, he will tell me all that I am missing.

Or perhaps, when that day comes, I will finally learn that I’m simply missing nothing at all.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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9 Responses to Gaps.

  1. Allie says:

    Look at that sweet angel’s little face while he’s sleeping. How do you stop yourself from kissing it a million times?

  2. I like the analogy of the mountain tops — seeing what our kids are doing but not really *knowing* — it really fits. For my part, I try not to think too much about it. When I do, it makes me sad for what I do not have with Little Miss — instead of being happy for what I *do* have. You came full circle in this post… and I don’t think I have to remind you, but please please don’t forget what our children *do* give us every day.

    As for the seizure meds, don’t beat yourself up too much. You will make mistakes. You are human. I can’t tell you how many times I have gone somewhere with Little Miss and forgotten to take her emergency medication with me.

    And just a thought — we keep a dry erase board on the fridge. We put one check mark for each dose — and if the check mark is missing, someone always notices. It’s not pretty or high-tech, but it works!

  3. Erin says:

    “The love is always there.” And that is the most important thing. Sometimes it seems the transitions in and out of school are harder on us moms than on the kids. My phone rings with alarms almost all day – if I didn’t have labels on the alarms I’d probably forget what I was trying to remind myself of! I do find the calandar app on then Ipad helpful for alarms as well, and they can be labeled more easily. He loves you and knows you love him. At the end of the day, or in the middle of the night, sometimes that is the very best any of us can do- and you are so lucky to have those words from him.

  4. Lizbeth says:

    You said this so beautifully and I (for once) have very little to say.

    Hugs and love, Lizbeth

  5. Lisa says:

    I agree that the love is what helps us get through those moments of panic and unrest.

    Medication slip-ups happen. Try to let this one time go…hard, I know.

    Hugs for you…and I hope the transitions with school go smoothly.

  6. How do you manage climbing into my brain, taking the thoughts in there and then perfectly wording them just right? I can’t tell you enough how much I connected to this. Beautiful.

  7. savvyadvocatemom says:

    I remember feeling that anxiety as Sensi was moving to her new school. Also in the grand scheme of things, one late med dose isn’t something to be too hard on yourself about. It will happen, and you do your best to make sure it doesn’t. You are a great mom. Only a few more days until school and then September will be gone. Really when they are in school full time it goes that fast. I am thinking good thoughts for you and Toots for your transition to his new school.

  8. Flannery says:

    I’ve forgotten meds a couple of times, and each time it’s like a kick in the gut.

    It’s amazing how strong the connection of love is, despite the difficulty to communicate. So beautifully written.

  9. Huge, huge hugs. I enjoyed seeing a glimpse of my prior “home” in that photo. Wonderful analogy. YOU are a bright light and voice for so many mothers experiencing similar journeys. Much love to you.

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