Ordinary Acts, Extraordinary Love

My girls have been in school a few weeks now, settling in- despite the challenges- two weeks of record Arizona heat, new classrooms, new schedules and the same old pressure to eat snack, eat lunch, drink water and do their best work. Two different schools, two different nurses offices’ stocked with medicine and strategically planned driving routes to include both schools and a quick commute to / from work. We are all doing the best we can, and achieving more than we even realize.

We have set routines, schedules and some pre-packing we do the night before; lunch boxes, snacks and backpacks. This allows me the much needed luxury of drinking serious amounts of coffee each morning, while I navigate my normal morning “ Mom” jobs.

I have watched in awe each morning as O works through her anxiety and jumps out of the car, moving as if she is in flight, streaking past the slow kids on the sidewalk, excited to start her day. And when I greet Zoe fresh from sleep each morning, answering her call- she starts right away, talking about her day, her school schedule, what she will wear and how her day might unfold.

And at the end of each day, when I consider how much I have accomplished, I can’t help but think about how each day begins-and how we power through. Tired is the theme each morning, I am up during the night with Zoe- and up late packing and preparing. And the girls, well.. their bodies don’t make energy correctly, the premise of their metabolic disease, so tired muscles, tired bodies are pretty common each morning. Yet, there is no complaining. There are words of encouragement, smiles and just the desire to meet the day. I try to soothe, energize with breakfast and warm words- and somehow we get out the door on time each day, awake and ready to go.

When we meet up again in the after -school hours, I am met with hot, sweaty red faces, tired eyes and grumpy girls. For the car ride I do audiobooks, preferring to listen to American Girl stories and Judy Moody over backseat bickering. Cold drinks and snacks are sometimes served in the car instead of waiting for home, and because my kids get extra tired, and Zoe can only carry so much stuff in a walker,  and O is already loaded down.. I do the extra trips ,carrying the extra bags into the house.

I had just made the last car run the other afteroon when Zoe had a complete meltdown after getting into the house. She yelled at her sister, sobbed in my arms, and generally was beyond any kind of reasoning. She was just spent. After getting her settled, and resting I went to check on O .

O had started into her sixth grade homework, yet as I watched her work I felt this inner nudge that it was time to explain some pretty important things. O is maturing quickly, and sometimes I see her watching her little sister and I wonder how much she really “sees.” And at this moment, I knew it was time to explain some things to O from a very different perspective. Zoe’s .

“ Hey .. I want to talk to you a second” I begin. And O, not yet a teen, turns giving me her full attention. Even quieting her ipod.

“ Zoe was pretty upset huh? I started.

Yeah, She’s tired” O replied.

This was a simple explanation we often use . “ Yep.” I agree.

“ You know how tired you get each night, how all your muscles ache and how even when you don’t feel good in the morning.. you keep going?” I ask.

“ Yes..” she says, drawing out the end of the word into a question, wanting to know what’s coming next.

“ I always encourage you to do that, power through” I say.. “ because you are going to have a lot of days when you feel like that, and I don’t want you staying at home, letting life pass you by.’

“ I know, Mom.” says O . A hint of impatience creeping into her voice.

“ Well…” I begin. Imagine how Zoe goes through her day. What is hard for you, is even harden when you can’t keep your balance independently, or walk alone, or when you have to stop and ask for help. It’s 113 degrees, It’s hot for us, moving quickly on our own two feet. Zoe spends her day in and out of her classrooms , and across campus in her wheelchair. Every day, Zoe starts the conversation with her friends, talks to her classmates, socializes, participates in choir, even though her words , affected by muscle weakness, aren’t easy to understand. She throws balls in PE, plays catch, writes her name and does 100 more things each day that you and I do without thinking “ and here was the hard part.. “ and she does it missing a part of her brain, with her eyes and most other parts of her body not working the way they are supposed to. AND, I stressed, just like you.. She doesn’t quit and she doesn’t complain.”

O looks up at me now, her eyes full. “ Mom, you are making me feel bad” She warns.

Her words don’t surprise me as this is my deep feeling, sensitive child. The one who told me we had to leave the yoga pant section at Target, because “all the black clothes were making her sad.”

I am NOT telling you this to make you feel sad. I am just telling you this so that you really see all of her, not just this, when she crashes or melts down.”

O is smiling a small, certain smile now, as she says “ I always knew Mom. I always knew Zoe was kind of a hero.. I just didn’t know all the reasons why.”

And that’s what we all forget sometimes. Mother Theresa once said.. “ Do ordinary things with extraordinary love.” and that’s what our kids do each day, ordinary things with extraordinary effort. And from that comes such extraordinary love.


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