Another milestone I never imagined would’ve happened as part of our parent-child journey. But life goes on.
It seems altogether wrong and disloyal and nonsensical that life should be going on. We sat in the waiting room of the doctor’s office last week, making nervous small talk with my parents while we waited for the doctor to come out and give us Lil D’s test results. Husband and I had run through the scenarios in our head, from best case to worst.
It was beyond worst.
Later that evening, after the flurry of family had left and we had gotten our own children to bed, signed off on homework and put out the backpacks and lunch boxes for the next day (because life goes on), my husband and I sat with our parents. They each gave us their most loving words of support and advice, drawing on Allah and faith and practical solutions and decisions we must pursue going forward.
But my mind had shut down, and I just wanted to sleep.
The next morning I took my youngest to school and stayed around to play Mancala with him, because his kindergarten class had been studying the continent of Africa, and parents were invited to come and play games and join in an African bazaar. Because life goes on, and I didn’t want to let him down, I went. And really, I enjoyed it – enjoyed him and the exuberant life radiating from him.
Yesterday was exhausting. After getting the kids to school and running around town to set some things up for Lil D, things I never imagined in our life that we would have to be doing, I went back and picked up all the kids and headed to his school for a meeting with his school staff. We sat and went over what we had learned from the doctors, and all the questions and possible changes it would mean to his educational setting, accommodations, methods of teaching and learning.
We discussed, yet again, his behavior intervention plan, possible ways we could keep him safer, why things had happened the way they had happened. We searched for answers. We came up with a lot of what ifs, maybes, how about we try and did anyone notice … But no definitive answers.
I noticed my daughter standing nearby, listening to us. I had debated asking the teachers if we could send the kids to another room while we talked, but I realized that with Lil D, it was easier if we were all in the same room. I didn’t want to be discussing him without him there. I didn’t want to be talking over him. Sure enough, throughout the discussion, he came over and sat in my lap, made his presence known.
For Amal, at her precocious age, she already knew a lot of what was going on. We had spoken with her and her younger brother about what was happening, and they had seemed to absorb things the way six- and ten-year-olds do – as sad, but matter-of-fact information to be lived with, not frozen by.
On our drive home, I asked her – do you want to talk about what you heard?
No, not now, she replied. But later, maybe yes.
I worry what she is thinking. Does she understand the seriousness of what is going on? Does it scare her? Does it make her feel like more than ever, her parents’ attention are drawn to her older brother and his continuing and mounting autism issues rather than all the things that are important to her?
But there is not enough time right now to brood over that, because life goes on. Homework must be done and dinner must be cooked. The therapist comes over and she, too, must be brought up to date on what is happening. The phone calls keep coming, and I can’t ignore them. I am a woman of contradictions – those loved ones who keep calling to check on us, I sometimes want to ignore the phone because I can’t seem to make small talk. Those who know the situation and haven’t called/texted/messaged — I keep wondering where are they ?We sit down as a family and eat dinner. Lil D tears through one helping then gets up and walks away. He quickly comes back and fiddles with his plate. Aww done, he says, then pauses to think of what he really wants to say – More. It never gets old. The thrill always bubbles up in me to hear him ask for what he really wants, even if it’s one small approximated word.
As the day winds down, we continue on our routines. I’m able to push down the overwhelming emotions in front of the kids, and thank God for that. I take Hamza up for his bath after dinner, and as I watch him take off his clothes, he says to me, look away! You’re going to see my booty!
Its ok, I say. I bathe you all the time and always see your booty.
He pauses and then says, ok then! Booty dance! And he turns around and shakes his naked booty at me. Who can’t laugh at that? Life goes on.
After sitting with Hamza for a half hour in his darkened room, listening to Lil D’s sounds of anxiety and sadness downstairs, he finally falls asleep. I slip out the door and pause in our daughter’s room. She is under the covers as well and reaches up to hug my neck when I bed down to kiss her good night. It’s not the time to talk to her about everything, but soon.
Lil D and my husband are under the covers in our room. He’s sad and won’t settle down, my husband says to me, so I thought it’d be better if we all just got under the covers in our bed. And so that’s what we do. Lil D’s a squirmy puppy, and soon enough the sadness dissipates and he toggles back and forth between my husband and me, throwing his legs on us, cuddling with our arms and seeking kisses. The minutes tick by, and my husband leaves the room to go to the hospital, because he is on call.
I drift in and out of sleep, but Lil D squirms next to me, settled more now, but still not asleep. Maybe being in our bed is exciting him a little, because he almost always is the one child of ours who sleeps in his own bed in his own room at night. He rarely comes into our bed. But maybe he knows I need him tonight, bumping up against me, pulling the covers off of me, tapping his fingers against his beads that I have wrapped around my wrist, letting his breath spread out warm over my arm.
The words of strength, comfort and faith coming from everyone are not doing a thing for me right now. I’m not irritated or upset when family and friends urge us to trust in Allah, believe in His Mercy, know that He has a plan, no matter how devastating and unfair that plans seems to be to me right now. When loved ones remind us to pray, that He can heal things in minutes, that these are fleeting, albeit painful moments and Lil D’s ultimate reward (and hopefully our reward, too), awaits us in the Hereafter. No, I’m not upset by these placations.
As time goes on, they will mean something to me again. He will wait for me to find my way back to Him.
But right now, Lil D knows. And Amal knows and Hamza knows. They know that life goes on, and love carries us through. That laughter must flow and dinner must be cooked and eaten and the naked booty dance must happen. They know that there is no other way. There is no other choice. We propel our bodies forward and live with love and figure out what needs to be done. What our next moves are.
Life goes on, and we must go on with it.