Goals for Grace, Grief for Me

"We have joy in our days. There’s sadness, too, but we move on." - Scott Watkins on his wife's life-threatening allergies (including to himself).

This line really struck me. I am currently going through a grief cycle with Grace. As I read in another blog post, the grief will probably never end. It will come and go in waves, and just as I adapt to the "new normal", she'll have a new bridge to cross, and we'll figure out another new normal.

My number one goal for her is to be independent. She is a strong, brave toddler. In fact, as I was typing the earlier part, I noticed how quiet she was... because she was in the kitchen, pushing a chair to the counter to get gummy bunnies. Instead of this being a mama's fear, it becomes my pride and joy. I tell her not to push a chair in the kitchen and to ask mom for help; she is rewarded with gummy bunnies. (But just one pack.)

Grace exploring after pre-school yesterday

My number two goal is for her to know her own dignity and strength. Before driving to Ohio for a wedding, we tried a dress on Grace. She exclaimed, "I am so beautiful!" I love that. We should all think so highly of ourselves. On the other side it, I am trying to teach Grace to trust her body more. She has the strength and the ability, but her balance is weak. We work on stairs a lot. I'm trying to teach her to be okay with falling. We all fall, physically and otherwise, because we are human. It's the attitude about falling that separates us between existing and thriving.

Grace on a trek through the snow

My number three goal is to keep up a "try" mentality. There are always going to be experiences and people telling Grace what she can and cannot do. My parents used to tell me that I wasn't a math person because I've always struggled with numbers (turns out I have dyslexia, but that is a different story). I recognize that they were trying to lessen the brunt of my struggles. The more they told me that when I struggled, the more it cemented. The more I became resigned to a calculator. My brilliant husband, on the other hand, constantly challenges me to do mental math and introduces me to games to help me practice these mental olympics. By pushing myself as an adult, I feel the importance of continuous trying.

A while back, I posted this story on my instagram: One of the biggest question marks for me is how best to push Grace in practical ways. There are so many things we do with both hands!! Fortunately, Grace is extremely self-motivated and always asking me how she can help. So when she asked to peel the clementine by herself tonight, my heart leapt. This happened, of course, after she initially fell off a chair trying to get a second clementine first. Grace cannot catch herself on her right side, and this can be very scary. She fell and cried, and we picked her up and told her she was so brave. Then she said, I try again? YES! Of course. And she climbed up and down without incident. Now, with only a little help to start, she peeled and ate the fruit by herself. Grace, you're amazing. Innovate your abilities, people.

Maybe you are thinking, I want this for my kids too! Or, Don't you want this for your other kids too? Well, of course. But here's the difference: typical kids do not have to learn how to use their muscles. Typical kids do not have to learn to use one side of their body. Typical kids do not have to overcome a stroke. And this is why I am grieving. I want to give Grace everything. But I can't. She has to propel herself. Sometimes, she asks to be carried down the stairs and I say no. Not because I am a heartless wench - but because I want her to thrive. I stay with her while she walks slowly. She is three years old, after all.

Family walk.

Grace, in short, must learn what it means to be human. She has been given a gift of empathy, innovation and trial. She has suffered much in her short life, and she will suffer more. I cannot stop this from happening. Even now, we are introducing her to walk-aid, which is an e-stim for her leg. She will get electronic current sent down her leg to signal her dorsal flexors to work properly in her right foot. The hope is that, in the future, she will not need her brace. We do not know if this will happen, but we try anyways.

(Mumford and Sons - "Turning of the Tide")

A final note on grief: I am not crying every day. I am not in mourning. I do feel a deep sorrow in my soul out of love for my child; but I cannot let this grief stop me from letting her live life to the fullest. It is certainly a teeter-totter of emotion! I am (still) learning to trust myself as her mother, I am learning to try again, and I am learning the dignity and strength in being the caretaker of someone who requires extra needs.

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