As I’ve been learning with mental illness, the crisis never really passes. It’s a fluctuating, living, breathing entity that waits in the shadows and teases you with just enough good days to give you hope, and then it knocks you back down with a very rough week. The worst thing about mental illness is that it likes to play games. You get that short glimpse of Dr. Jekyll, the kid that can be successful at school until noon, that is happy and loves to be hugged, only to have a quick descent back to Mr. Hyde, preceded by 5 nights of not sleeping. How a young child can go that long without sleep is so beyond anything I can fathom. It’s not that she’s choosing to not sleep, it is very clearly a physiological inability. She screams at me all night long to give her something to make her go to sleep….I can’t, she’s maxed out on meds. The Trazodone that was overly sedating the previous week is no longer touching her. If I took as many extended release melatonin tabs as she does, I’d be sleeping for at least 72 hours straight.
There have been many times this past week when I think to myself, “I shouldn’t have to do this, this isn’t fair, this is not the way parenting should be.” When I was pregnant, I didn’t imagine this as the outcome. I imagined this perfect little person that I would be best friends with, we’d immediately connect, laugh together over hot chocolate, cuddle all of the time. We’d be just like what you see on TV…we’d be like Lorelei and Rory from Gilmore girls, or Julie and Susan from Desperate Housewives. Our personalities would always mesh and we’d never fight, best friends forever. There would be none of this second-guessing or crying, I’d never need a break because we would always be happy, right?
My personality is very much so the head strong, let’s get this done, we know the problem now, what steps do we take to fix it. If someone asked me to describe myself in two words, I’d use proactive and efficient. What does a person with my personality do when something cannot be fixed? you begin to grieve.
Since the diagnosis I have realized that I have finally started the grieving process. No, no one has died, and no it’s not comparable….but the way I imagined my life should be has passed away, and it isn’t coming back. Every day I’m reminded of this in one way or another, and with this grieving process, the “I shouldn’t have to be doing this” has popped up from out of nowhere. This weekend I watched a family at a local Christmas shopping event while they interacted with each other. Standing quietly and happily, the young daughter kept looking at her mother, smiling, and telling her that she loved her. Their relationship seemed so perfect in the short snapshot that I saw. They were holding hands, and the mom kept leaning over to hug her, to display her affection to a child that she clearly loved a lot. I couldn’t help my overwhelming jealousy. That is what I had wanted….and then sadness with a twinge of hopelessness when I realized that that will never be me, I will never be that mom, and that will never be my daughter. S wasn’t able to come shopping because she had only slept 2 hours the previous night and had already attempted to hurt herself several times that morning. I had already coordinated the emergency plan with family and friends in the event that we needed to bring her to emerg. I will never get to experience the normalcy of that family, and in essence, that is what I have been grieving over. I felt that sinking feeling when negativity drapes over you and weighs you down. I started to fixate on all of these things that I shouldn’t have to do.
-I shouldn’t have to hide all of the knives in my house because I’m worried about my 7 year old who keeps talking about cutting herself.
-I shouldn’t have to spend countless hours in therapy every week, for both myself and for S.
-I shouldn’t have to learn proper restraint techniques for the next time she becomes violent.
– I definitely shouldn’t have to be called a “f*ckhead” on an almost daily basis (seriously though, where did she even learn that!?)
-I shouldn’t have to pick my grade 2’er up between 10-11 every morning from school.
Yep, I shouldn’t have to, but I do have to. I cannot fix this. I try to say to myself frequently, almost like my special needs parenting mantra, “suck it up and do it.” I get so consumed with these thoughts and dreams of how things should’ve gone that I am missing the real moments in front of me. Those real moments suck a lot of times…but sometimes they don’t, sometimes they’re imperfectly beautiful if I look hard enough at the situation.
Special needs parenting is one of the hardest jobs I’ll ever have to do because of the selflessness that comes with “sucking it up and doing it.” If this was a typical job that I was hired for, I would’ve quit long ago. The hours are too long, there aren’t enough breaks, it’s too stressful, definitely unsafe working conditions, the boss frequently swears and rarely shows her appreciation of my hard work, and to be honest, she also can be a bit of an a-hole at times. Don’t get me wrong, I love my daughter…sometimes I don’t love the situation. But we can’t quit, that’s not an option. We show up every day, forcing a smile even on the worst days. I put on my swimsuit and goggles and ride the bipolar wave regardless of how I am feeling that day.
The other day S was having a mood episode and was throwing chairs at me and repeatedly called me the B-word. While frantically trying to hostage negotiate her little sister out of the rage circle, I kept thinking about how all I wanted to do was scream. To yell. To run away (but come back to make dinner of course). To sit down and bawl and throw in the towel…And I didn’t…because instead of verbally telling her that I love her, staying and weathering the storm is how I show her I love her.
When people joke about not messing around with special needs parents, they’re actually not really joking. We are badass warriors, therapists, crisis managers, routine organizers…we see some stuff that makes most people feel uncomfortable, then we laugh and joke about it like it’s no big deal, like it’s just another day, and we do this daily because of love. The love and work I put into S and my relationship does not show the same way that that family at the shopping party’s love does. You can’t see it, but it’s there. We don’t hold hands and she rarely tells me she loves me, but it’s there. I wouldn’t be showing up every day if it wasn’t there. My imperfect family does not make me any less of a mother than that mother is. I try to remind myself of the things I should do, the things I need to do:
– I should be laughing a lot; being called a f*ckhead is actually sort of funny when you think about it.
-I should not be comparing my life and my ability to love to others, because they will never be comparable.
-I should cut myself some slack and take breaks when I need it.
-I should know by now that perfect doesn’t always equal better.
Parenting has never been about doing what you want, it’s always been about doing what is needed, and that is particularly true of special needs parenting. As a special needs parent, you will keep doing a bunch of things no one should have to do that are done out of dedication and a hope that one day maybe you won’t have to do it anymore because you worked hard, you loved harder, you rolled with the punches, you adjusted your expectations, you did a lot of yoga, you ate an entire box of turtles, you cried and came to terms with the fact that this is how your life is and regardless of the situation, you will keep showing up to work every.single.day.
Appreciating the Little Things 