My youngest daughter, Aidan is days away from finishing her Masters of Accounting Degree. Her Undergrad was a double degree in Math and Accounting. Her father and I are so very proud and amazed at what she has accomplished in her short life thus far. She is after all, just 21 years old.
She has an incredible work ethic and incredible smarts which have carried her to this day and it makes me reflect, as I am known to do, on days not so far away when her brilliant future was not so clear.
Both of my children have incredible drive and have already done so many wonderful things. Their Dad and I pale by comparison I think most days, and are awed by their strength, determination and beauty. Today, as she is finishing one Chapter and moving on to the next, I am thinking of Aidan, all that she has done and had to overcome.
I’m thinking of people in general who have faced difficult illnesses or adversity and who may have lingering effects of that, battle scars that may or may not be visible. Aidan has debilitating headaches for instance, that plague her now and probably forever as a result of what she endured as a child. It is part of who she is and it means sometimes her plans must change. I forget to tell her sometimes how brave I think she is to deal with that and continue on in spite of them.
Following is a narrative I guess that I wrote about 13 years ago. I found it today when I was looking for something else and those words felt as raw and real to me as they were when I wrote them. I didn’t edit and apologize for fragmented sentences and run-ons …
Today feels less like a funny reminiscence kind of day, although I have lots of those, and more a need to put it out there to the Universe and hope it reflects back with positivity on someone who needs to know that we’re all in this together.
Our stories may differ, but we all have one.
There are moments woven into our personal histories that change us, disassemble our certainties and forever re-arrange our planned being.
“Are there any muscle group disorders in your family?” says the woman on the other end of the line.
These words, I immediately understand, are going to change our lives.
I think I’m going to throw-up, instantly fear and nausea overwhelms me.
She has introduced herself as a Language Pathologist for the School Board. She has assessed Aidan today. She has “ concerns…”
A swell of water has suddenly rushed into my head. I try to focus, sound intelligent, understand what she is saying but I am drowning already in fear. I decide to breathe, to smile because the girls are watching me, little ears on alert, always curious. I will do as she advises, I will call the Dr. as soon as we finish our conversation and I send the girls outside to play just as soon as I “gather myself.”
I used to think that was a funny expression, before I understood that life is about moments.
The phone rings three days later, it is 7 am. Angus is already off to work, keeping the school buses on the road. I feel my breathing slow when I look at the caller ID. It is the Dr. and he is calling at 7 am. Nobody calls at 7 am, especially Dr’s…
Thank God the girls are still asleep I think as I say “hello.” I am calm, remarkably so, as he explains the CT results. There is a mass, looks like a fluid-filled sac, which remarkably is good thing, in her brain?
“What? Her brain? No. She is eight years old. She is happy. She is brilliant. She is funny and sweet. Why is that good?”
I’m filling up with water again. I’m having trouble focusing. “Please slow down, stop talking while I breathe, I need to breathe “…
Four years before we had a moment where everything changed.
Catey was six, it was Easter weekend and she ate a lot of chocolate and the next night, she wet the bed. I knew, in that instant, that something was very wrong. Angus laughed when I called the Dr. for an opening that morning. He went to work; blissfully unaware that life was about to change. He was thinking, I know, that his wife had enough to worry about without creating drama in her head.
I went to the Dr and insisted he check her urine and I was so miserably, pathetically, resoundingly correct. My first born, my love had Diabetes. He was astounded that I was already there.
I knew, in that moment, we would never be the same.
Three days in hospital immersion in diabetes then. They came at us, over and over and over, no mercy, and no capacity it seemed to understand.
“ This is our child, we are her parents,” I screamed in my head.
“ My heart is broken, do you understand, our hearts are broken, we are terrified.”
Still, unrelenting they came at us. Nurses, Dr’s, therapists, nutritionists…
“Understand now,” they demanded. “Listen to us, watch this, inject your kid.”
“Make her hurt willfully, are you crazy? How can I do this?”
“ Learn, hurry and get this, then you can go home,” they smiled.
“ Go home and what?” I thought then. “ I’m terrified I’ll kill her, overdose her with insulin. How will I do this? Who’s going to help me?”
We had adapted, survived, changed. One income now, no career in my future but she was safe and happy and we were ok. We had a plan, a strategy, we could do this. We could live with diabetes.
But this now? This unknown, in her sisters’ brain?
How do you fight an invisible ghost?
More Dr’s and tests and hospitalizations and theories and possibilities and potentialities and educated guesses. This was not the same, this was worse.
I had no control. Nothing to learn or change or do but wait for the best option scenarios. Endless moments of worry, what if’s and why’s.
Another call, “this is a strange number”, I muse. “Telemarketer?”
For once my antennae s not working. I am caught off guard.
“ Please hold while I put the Dr on the line”, and my knees buckle.
I sit on the floor, back to the kitchen cupboards and wait. This is the new Dr., the Supernova that all the others look to; he is the one who chooses my moments now. He talks, I listen. I nod, alone in my kitchen, planning as I digest his words. I think,” Ok, breathe, we will survive this, and we will be Ok. Get up now, quickly pack.”
I quell the weeping teachers fears as I pull her from class, breathe, smile, and no fear for Aidan. “This is an adventure” I say and calm Catey. “Daddy will be here soon and then Aidan and I will go.”
“ Time is not ours,” they said at the Dr’s conference somewhere in the US from where he called after presenting her case.
Drive to the hospital, we must hurry. I hate this pace, this rush, no time to think, to ponder, to question. Catey at home with Angus and insulin and fear; me alone with Aidan and forms and papers and decisions now. It is a blur. I need to breathe, I need a moment …
Hold her hand and smile as they wheel her away. “ She looks so little,” I think.
“I’ve braided her hair, will it all be gone” I wonder?
I cannot weep, yet. I will fold up into a little ball and cry when I am alone.
Now I must be calm, erect, in control. Angus is weary: he is not accustomed to our unit being broken and of fear that goes on and on.
I have signed consent for them to fix her or kill her or leave her blind or unable to remember moments, mute? There is no definitive plan. There is hope it will go well and no guarantees.
Four hours they said.
It is nearing ten. Ten hours in surgery. Ten hours working on her brain.
“How is Catey”, I wonder? I worry but cannot be there now. How many directions can one heart be pulled in?
I want to peel off my skin, tear out my hair, scream. Anything to break this vigil. I want to know, this minute. Where is my girl? Have we lost her?
I look around the room, the waiting room. I see faces like mine, in agony, in fear. Moments taking an eternity we all must endure. The silence is heavy and consuming. I forget my grief for a moment and consider theirs. We are all parents and all working to stay clam, positive, in control. I smile for Angus, squeeze his hand, struggling with the weight of this fear. He has no words for this. It is too painful to discuss and so we sit, quiet and still.
Finally he steps into the room, the Magnus Opus of Dr’s, our hero. He opens his arms to me and smiles and suddenly I can breathe. This moment is good, it is hopeful. It is done and we will have her back, whole and safe. She is still ours, she will be Ok and we will be Ok.
He leads us to her now. Her head is blue and battered, swollen and almost unrecognizable. Beautiful. She looks at us and smiles, a new moment to cherish, to hold on to.
“Ten seconds, ten minutes, ten hours, ten years,” they say
Measure these moments, the impact they hold, the destination they plot, the struggles they cause and the joy they will bring.
We have struggled before and we will again. I know this with certainty. These moments will return in different form, in sometimes painful measure and sometimes joyous release and I will continue to breathe.