Grace is power, not just pardon.

Ellie’s birthday is next week. She will be two years old.

She is the biggest mess in the house.

I feel like she has been here for a million years. I think it is because of the amount of attention she requires. I keep hearing that she will grow out of this or that medicine or physical restriction, and I find myself wishing for that day a lot.

While I was changing her diaper this morning, I wondered how much longer I would have to buy diapers for her and whether Gus would potty train before she would.

Every minute that she is alive is a minute that I don’t breathe as easy as I used to.

Jack and I cooked breakfast this morning while Ellie sat in her chair and danced to the music coming from the speaker (she’s into Queen these days). She was drinking her morning milk and barking orders at us, like she always does. I had my back turned to her and was working at the sink when I heard liquid hit the floor behind me. I turned around and saw her vomiting.

Jack, very nonchalantly said, “Mom, Ellie spit up,” and went back to stirring the cake he was pretending to make on the counter.

Once she stopped, I told her that everything was okay and that I would clean her up when I finished cooking breakfast. She sat there smiling and singing while I pulled the tortillas for breakfast tacos out of the oven and finished cooking the eggs. I made Jack’s plate and he carried it into the den and started to watch a nature show on tv.

Ellie laughed and smiled as I carried her to the bathtub. Once she was clean and dressed, I put her in her gated play area and handed her a new cup of milk.

It was about an hour later when I started to realize that this scenario would not be met with the same business-as-usual attitude in other houses. Jack’s reaction was so practical because watching his sister loose her milk and meds is something he has seen a million times over. He thinks that all of her daily medicines and feeding tube button are “girl things” because he and Gus are boys and don’t have them.

Ellie has pushed me to the outer limit of things that I think I shouldn’t have to deal with. I have spent two years muttering “I can’t do this shit anymore” under my breath when things get really hard or when my plans are interrupted. What we have to do to keep her alive is gross and inconvenient. She is not the little girl I imagined her to be.

Some days I even think that I shouldn’t have to do these things, like it is somehow beneath me. She has pushed me so far away from comfortable, I don’t even know how to get back to comfortable anymore.

I remember telling Ben one night before she was born that I was scared because I didn’t know how to advocate. I didn’t think I would be able to fight with insurance companies or stand up to others to do what is right for my daughter. I thought I would just cave and roll over. Now I understand that it wasn’t something that I would need to learn. It was something she would make me just do for her own good.

My jaw has been tight. I’ve been waking up sweating because of nightmares about being unable to keep my kids safe. I have started having happy hour early because I am so tense. I have gotten good at ruining fun. I have been really angry.

I recognized this level of anger. I was this angry before Ellie was born. I was so mad that I was going to have to have a kid like her. I was mad at her because she was going to change my life forever and there was no going back. I was mad that I could do everything right but I may still lose her. I was mad that I could not find an answer. I wanted a guarantee that she would be okay and that she wouldn’t ruin everything that was so easy in my life.

These days I am angry that what I want, to keep my family safe and to have a peaceful home, is being challenged. I am hearing that I am selfish for wanting to keep my family safe. I am furious that I have no control and that no amount of doing things right or hard work is going to change anything.

I went to Hocott’s at lunch to pick up some plants that I ordered. As I was checking out while practicing social distancing, we talked about how busy they had been, that it wasn’t even the peak of spring planting season yet. I said I wanted something that made me feel like I had some control and I wondered how many others of us stuck at home felt the same way. My hope is that watching my ferns grow after I water them every day will give me a little piece of what I crave.

On my drive home, I thought more about my anger and I realized that its really something else bigger. The anger is just a manifestation of fear. I am just actually afraid of what I don’t yet know. Like a lot of us, I want to know how the story ends. Whether or not we do or can admit it, we are all afraid right now and are searching for a level of comfortable.

There’s teacher Ellie’s lesson again. I am so afraid of her. She keeps me on my toes. Keeping her alive is scary, thinking about what she will be like as an adult is scary, thinking about whether or not her heart will hold up is scary and wondering who will take care of her is scary. She is a boulder that I carry around on my back with me always.

All of the times I’ve said “you’ve got to be kidding me,” all of the tears and all of my solo drives on the interstate so I could scream without anyone hearing me, has pushed me forward. Because of her and the fear she puts in me, I am a better person.

She has forced me to go places – literal places and figurative places – that I never wanted to go because I thought I was too privileged. She has pushed me to ask questions and get curious about what impact the world has on me and the impact I have on others.

Fear makes me comfortable with uncomfortable and gives me the ability to start to look beyond myself. Being afraid is not bad. It’s part of doing something new, being vulnerable and doing what is right even when it’s hard.

Recognizing my fear minimizes my anger and opens the door for grace. I start to look up and out instead of down and in. My friend posted about this on her blog last week. It was a reminder for me of what I was missing.

Giving myself and give others grace. That’s how I am going to get through this. My jaw is already feeling looser.


6 Comments Add yours

  1. Merrily says:

    So honest and raw. I love your posts.


  2. Cindi Newlin says:

    Your strength in facing fear as it comes is powerful medicine to those of us with so much less to fear! 💞💕💕


  3. Mrs. Jessica says:

    I love and miss her dearly. Hug her tight for me.


    1. heatherphonaker says:

      Oh, she misses y’all so much!


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