I often fall in between thinking that I should be grateful for all of the positive in our life because of our daughter and then the opposite of having a high amount of grief over the challenges we face. You see our life is significantly affected by our daughter’s invisible disorders.
If you’ve never heard of a disorder being invisible, that means that physically on the outside she appears typical. Specifically for us because her disorders are neurological she appears neurotypical. In public, we appear like we’ve got it all together. In all of our family photos we look like a happy typical family. Although, our real life is far from any of that.
After wrestling for several hours to get Miss S to sleep, we usually have a long night of many wake-ups ahead of us. Our days usually start around 4am. And sometimes we consider that sleeping in. There are nights that she will only accept mom. And there are nights where it takes both of us.
This makes for two very exhausted and short on patience parents.
Mornings can go either pretty good or pretty bad. The second she wakes up we can usually tell. If she’s yelling and arguing and throwing things, it’s probably not going to be great. Now, attempting to be a patient and kind parent at 4am when that’s happening…that takes skills my friend.
Sensory Dad is lucky enough to not be present for most of our morning routine. I prefer it that way anyways. One on one is just easier with Miss S. Think of our morning routine like a pinball machine (ya know where the ball jumps all over, out of control going everywhere but where it’s supposed to go): brushing teeth, socks, pants, hair and getting everything together. I’ll skip the mess of the routine and get to the amazing part…drop off! At this point I’m feeling like I’ve ran a marathon and text Sensory Dad to vent and get some support and let me him know that I’m alive. The reality is that any one of these routine activities can set something off in her that explodes and there is no going back from.
In our earlier years of marriage Sensory Dad would call me every day at noon. Sensory Dad and I (OK mostly him right now) have demanding jobs, sometimes he calls me during the day and I pick up quickly asking him if he’s on the way to the emergency room. Because most days he’s too busy to call. Home for him became more stressful than his very stressful job. Which really says a lot.
Fast forward to our evening routine, we have about 4 awake hours of tasks that we need to get Miss S through and they can be summed up by imagining getting an alligator to eat, brush teeth, put dishes away, do homework and get ready for bed. Then it’s bedtime… oh for the love of bedtime! It’s like an extreme sport in our house and thankfully almost every night at some point I win and she falls blissfully asleep for at least a couple of hours.
I realize that to most this probably doesn’t sound that bad. It probably sounds like typical kid challenges. But with a child that goes from 0 to 60 at the drop of a hat emotionally, it’s like herding an explosive time bomb. You never know what is going to set it off and you are constantly hyper aware of anything that could make it explode. And when it explodes… it completely tears you up inside. You lose all sense of tact and ability to parent typically. Because reality hits. This is not normal.
A daily task becomes an all-out war. And the reality of this lifelong journey makes a parent feel very defeated.
It sucks life from events that are supposed to be fun.
It takes joy away.
It breaks down connection and relationship between all of us in our family.
It makes every single part of life a fight. And it’s exhausting, defeating, heart wrenching and it just might be the biggest challenge of our lives.
But it makes so much of our life worth it. As much as this has broken us down into nothing, it has built us up into stronger and more capable people than I ever would have thought. I wouldn’t trade that for anything.
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