I have been washing the same load of laundry for two days.
The first time I loaded all of that dirty laundry in the washing machine, I had no idea I would forget to put it in the dryer two times yesterday and three times today. I started the load as a woman full of optimism and intention of taking care of her family, but each time I remember that I never actually put it in the dryer, my self-esteem falls lower and lower.
I went to a meeting today about insurance for Ellie. I walked into that meeting full of hope that I would understand more about how to take care of my daughter, imagining I would walk out of it full of knowledge and with a spring in my step. Instead, on the way home, I called a friend and cried about how hard this is. When I got home, I realized I had been clawing at my chest and legs because I had broken out in hives, due to stress and nervous energy.
To add insult to injury, I remembered that I didn’t put the damn clothes in the dryer again before I left home.
Earlier this week, my husband and I went to a parent teacher conference for Ellie. She is making great progress and is a joy to everyone she meets. We heard the same positive things that we hear every year, but the reality is still we have a daughter who is behind and will need extra help to catch up. It doesn’t matter how many times I hear it or who says it, it stings just as bad as it did the first time.
Tomorrow, Ellie will go to the hospital for a sedated MRI to take pictures of her brain and skull. Her fontanelle, or soft spot, at the top of her head has not closed and that happens normally by 18 months old or so. It fell by the wayside because of her heart surgeries, and I’ve been silently beating myself up for not asking for a specialist’s consult sooner. The neurologist was encouraging and comforting when she told us that this was not as big of an emergency as her heart surgeries, but still, the fact is that we have a daughter with a significant delay in her skull’s growth that has to be taken care of.
The highs of having a child like Ellie are so high.
Just Monday, she got in the car after school and said, “Happy Halloween.” I cried as I made her say it again while I recorded a video and then texted it to about 50 people. She has never said the word “happy” so clearly, and I had no idea she even knew how to say any words as big as “Halloween” or that she could use them correctly – something that wouldn’t have even registered as a blip on my radar if it were to come from either of my other two (typical) kids.
But the lows are so low.
I am privileged. I know that. I have a job that lets me work from home with flexible hours. I have a husband who can read all of the legal garbage that is included in everything that comes in the mail addressed to Ellie Honaker and can reassure me that everything will be okay. I have a tremendous support system in her school, hospital and doctors.
I shouldn’t feel like everything is stacked against us because I have it much easier than so many people in our position, but she is only 4. And I am already so tired. She continues to be a disruption and a challenge, and I don’t see an end to that.
“You deserve support and answers,” the woman speaking about insurance said tonight. What I heard was, “If you were deserving, you would have what you need. Work harder.” Which led to: “Just what did I do exactly to deserve this?”
This is silly, but I genuinely feel so bad when I step on a mound of dirt and realize that it was an ant bed. When I see all of those ants run out frantically trying to fix what I so absently messed up, my first thought is always “Those ants are wondering ‘What did I do to deserve this?’”
I empathize with their frustration over how they will spend hours and days rebuilding what took me just one second to destroy, their whole lives turned upside down. In some cases their tunnels won’t ever be able to be reconstructed to what they were before, a disruption and challenge to their previous way of life or plans for the future. There is hope in knowing that the ants will learn new ways of doing things and figure out how to be happy with what they can accomplish, still being productive even if it involves trying a different path through a new tunnel.
I’m going to go put the freshly cleaned load of laundry into the dryer now before I forget again.
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