I knew what yesterday was. One of my favorite peep’s 40th birthday. Today I saw January 13th, and the number stuck out. I have something important to do? What the heck is it?
My first meeting being an advocate for children transitioning out of the foster care system! It made sense. I have a Master’s teaching kids with special needs in urban environments. My career before my illness was about students in urban environments. Many were in foster care or group homes. It’s like, a chance to go home. I’ve always been pulled to children in need. It’s like I need to be needed in this way.
Something in me never rests unless I am helping. I was born this way. It just is.
I can’t teach anymore. But I can move my lips. I can’t get around all the time. BUT, I was assured If I need to be in court and can’t make it, they can appoint someone for me. I can advocate from my laptop, laid up. I can use my voice. My phone. My fingers. Until they go, I shall use them. Happily I learned there’s another advocate for the county who has MS and is in a scooter. We can volunteer together, in our own ways. It sounds little, but it’s a big deal to me. It’s important to me.
January 13th.
That was why it stuck out. BUT, then it hit me. Flashback to Jan. 13th, 2009, singing happy birthday to my 6 month-old son, we affectionately called “Meatball”, when I got the call. I had multiple sclerosis.
Today is my MS birthday!
I knew that date rang a bell. Wow. I don’t know how many years I have even paid attention to the date? As soon as it hit me, I hobbled half-awake, to find AJ to remind him it was his half birthday. Kids dig things like this, right? His face lit up and I could see him thinking, “That’s a thing? Do we burn stuff and eat cake?” And then he reminded me it was cloud window time.
The “cloud window” is an assignment from class. It’s a neatly-taped square, made out of four pieces of cut-out, black paper. A perfect square he looks through to determine the forecast for his day. Every morning he needs to look out his cloud window so he can report the weather to his class. I wasn’t sure if he’d dig this but he does. He loves leading us to the window and sharing what he sees. Turns out, I love it too. It’s a moment we share. He’s literal. I’m figurative.
I redirect him from the shadows, to the light on my MS birthday and his half birthday.
“The snow! It flurried Mama! There’s snow on the ice back there!” “Yes, yes! And the sun. Can you see the sun? Cold and sunny is kind of cool, right? It’s both!” We fist bumped and continued getting ready for our day.
Years ago on that MS day, our window was a cake. Shaped like a meatball, lit with one solitary candle. His forecast was brilliant and flickering, casting shadows of possibility on the kitchen wall. Mine was questionable at best. Even then, I still smiled and stared at the candlelight and called him to notice the beauty and not my cold. Much like today.
AJ’s cloud window made me realize how we do look out our windows and recognize reality. It was indeed 20 degrees out. There was ice. But I still had the chance to nudge him to notice the sun, the clouds, the shadows that represented the trees that are so full in the spring. They’ll be back soon.
My forecast wasn’t sunny when I was diagnosed. I had no clue how much MS would change my life, but in a good way. I was looking at it through a storm window. MS does suck. I’m not denying that. But it has also changed me. I am empathetic. I care about people, especially those who are alone. I advocate for those who can’t for themselves. And I do it, on my 7th year of disability. That’s my birthday cake. I can’t teach. It’s just my MS. But there are so many wonderful things we can do.
I won’t list all the "wonderful" things I have “done” in the past seven or so years (I'm laughing). But I will say this: I have my own cloud window now. The forecast is sunny, even when it’s chilly. I have learned this through my walk with God and illness. Through holding the hands of my children on the way. My window is what I want it to be. My perspective is mine. I can change windows to find the light or the beauty, or to block the wind. I have so much control of this through perspective.
The power of perspective is awesome. It’s everything. Remember that.
I have also learned that gratitude is everything. Wanna be happy? Be grateful.
I have gratitude for the smallest, seemingly mundane, things that people probably don’t notice. Our home is filled with “thank you”s and “I appreciate what you did for me” is something that is commonly said. But it’s not just words – it is truly felt. Gratitude is a life saver. A happy maker. It’s been this cornerstone of survival. I've also noticed that my home is filled with people who have a similar gratitude in their DNA.
My husband handed me my coffee before I got to hand it to him. Wooohoo! AJ’s cloud window. Zoe’s impersonation. That gratitude is us seeing the value of life and living a THANK YOU. It’s life lived in the sun. It’s that thing that takes you, mesmerized, in the flame of that birthday candle. It’s good.
Whatever you are living with, find gratitude in everything around and even in that (your adversity), and you’ll be ALIVE. Alive in a way most people don’t GET until they are given a date or a scope of time until it’s over. Truly living, eyes wide open.Surround yourself with people who truly get this as well.
I am so grateful to look out AJ’s cloud window. I am so grateful that I can still help, despite the MS progressing. I am so grateful…period.
It’s been a long, wild ride since my diagnosis. I often get approached by newly diagnosed patients, asking for tips. So many things to share, it's been hard sorting out what to say – but the most significant thing I need to share – time. Understand time. Understand how valuable it is. I stopped being “busy” and making “money” the way I was taught to, to heal. It wasn’t a choice, but I could have mistaken it as a choice until I was in a scooter three months after diagnosis.
I think the only reason why I’m walking, albeit with a cane, is because my family and I knew how “busy” was robbing me of my quality of life. Being “busy” will progress the disease, rob you of your mobility and strength etc. if you aren’t spending that time on quality ventures.
Henry Thoreau once said, and I’m paraphrasing, that even the ants are busy. Anyone can be busy. The question is, what are you busy about? That is an uber important question to answer when you are ill, even when you are well...it's important.
At seven years (is it seven or 6.5?) I can say, I’m busy looking out a cloud window with my son. I am so grateful that I can see the sun and point it out to his new eyes. I love his literal to my figurative. That my husband brought me coffee first. Tomorrow I will be grateful to beat him to the chase. That I can show up, in my own way, for young-adults who still need my voice.
Heck yeah! That’s living. No great explosions. No fireworks today. Sometimes there are!. But mostly, the fire, that thing inside a flame that makes us FEEL the force and become catatonic by its beauty, is in the small things. The gratitude of them. The single birthday candle. The cloud window. The coffee.
*Happy half birthday to Meatball, who shares his cloud window view with me. It always makes me grateful, and changes mine. You grew up with mama’s MS. I am grateful that you can see how we can live with adversity, and BE…happy, grateful, and giving.
