On Friday, we celebrated Sam's first ten years on earth. His first decade. It was a low key, relaxing day. He ate cake and opened presents. We sang to him. A great, relaxing day. He had a 'good brain' day, so everyone relaxed and enjoyed the day.
Then, on Saturday, the kids were getting ready to go to their dad's house, and Sam became agitated about his new headphones. He argued that he needed them at dad's house, and his life would be bad without them. I held firm - we don't transfer belongings between houses, and he has headphones at dad's house. This became a big issue - a fit, refusal to get in the car, refusal to buckle, and then refusal to get out of the car. He banged around, threatened his siblings, and shoved Alexander. Thankfully, the car ride to their dad's house is less than 2 minutes, because he was getting wound up. His dad ended up pulling him out of the car and into dad's house.
As I drove off, I felt a mixture of relief, fear, and sadness. It's always a relief to have that time to work, to sleep, and to recharge. And then there's the fear for my other kids. I worry about them constantly. I think about their safety and wonder if I will get a call that Sam has injured one of them. Each of my sweet babies, who grew inside my body, away from my vigilance, and at Sam's mercy. My mind races with those thoughts on Sam's 'bad brain' days.
Later that evening, as I perused Facebook, I my eyes caught several sets of pictures from friends' children's 10th birthday parties. Parents celebrating budding independence. Parents mentioning seeing collaboration and friendships. Smiles and presents and lighthearted joy. And my heart shattered.
It seems that parenting grief comes in waves. Loss in this way is not one event that can be sorted and filed in one's brain. It is an ongoing loss - missing more and more of my child as he disappears into his beautiful, Escher-esque mind. Especially with a severely mentally ill child, most of my time is spent trying to keep everyone safe and to meet each of my kids' most basic needs. So many issues become crises. This prevents me from having to stop and think about the future, or about the reality of looming diagnoses. It is parenting by putting out fires, rather than carrying out a well-executed plan. This busyness also allows me not to reflect or internalize the magnitude of these issues.
But as I looked at the pictures of 'normal' ten-year-olds, there was no keeping kids safe. There was no work. There was no juggling everyone's needs and praying for a calm, injury-free day. There was no crisis intervention. So the pain came. I cried for the child I had hoped to have. I cried for the little boy who lives in Sam, who is scared all the time. I cried for the sad little boy who just wants to be loved. I cried for the normal life and the friendships he will never experience. I cried for each of my other children who will never know life without constant, penetrating fear in their own house, from their own sibling. And I cried for me. Because as much as I love Sam, I am scared of him, and for him. I don't know the best way to help him, even though I desperately long to make everything better.
I am so exhausted. I can't explain how bone tired I am from being on alert every moment of every day. I can't even explain it in words - this level of tired. I've told friends that Sam doesn't sleep. And I get well-meaning "oh, my toddler didn't sleep well either" stories. When I say Sam doesn't sleep, I don't mean he is a little restless at 3am. I mean Sam spent several years sleeping 2-4 hours a night, with little 15-minute sleep jags outside of that. Since he is a danger to himself and his siblings, that meant I spent several years sleeping an average of 4 broken hours a night. And as anyone with a newborn will attest, it breaks you. Now, on an antipsychotic, he sleeps 8-10 hours. I find myself waking up intermittently at night, in a panic, checking on each of my children. It sounds ludicrous, but I spent so many years ensuring everyone's safety at night that it is etched into my consciousness. I awaken at night for safety checks. And even now, as he wakes up and talks to his imaginary friends at 1am before falling back asleep, I hear it. I hear everyone's night movements because that type of protectiveness is so engrained in my body.
If the physical exhaustion wasn't enough, there's also the weight of the future. And the weight of the 'now.' Right now, we're seeing an autism specialist, a neurologist, a psychiatrist, and have an EEG scheduled, and are waiting for a call from a local hospital to schedule an MRI. These are all appointments in the next 6 weeks. There is the time spent going to these, the time explaining them to Sam because he fears all doctors, the time arranging for childcare (since dad won't attend most appointments, but won't watch the other kids), and the missed work and family time. Then there's the wondering about the future, not to mention the financial toll of specialist visits and medications.
And I have 3 incredible other children, each of whom deserves all the time and attention in the world. I wonder who they would be if given the chance to shine.
But as it stands, we're a decade in. Here's to a calmer decade to come.
