One of my many strands...
I consider the creation of a single pearl to be a stunning accomplishment.... Have you ever taken an moment to consider?
Just take a moment, a particle of sand, slips into a shell, the friction, irritation, the discomfort, produces a spectacular often breathtaking pearl.
Out here on the West Coast, folks make fun of my pearls. Too fancy for the Cali, beachiness of it all, but not for me--I wear my pearls with my Star Wars t-shirt. I frankly can’t think of any occasion that can’t be made better with pearls.
Classic. Timeless. Elegant.
Pearls may be my most favorite piece of jewelry. I have long pearl necklaces, short ones, earrings... More importantly, pearls speak to me about life.
A tad bit of irritation that manifests into something extraordinary.
I’m a bit of an expert on being irritated--goodness knows my family is well aware.
Take our latest trip to San Diego (SD) on Sunday. I seethed. The entire trip down. I hate traffic; and despise being stuck in the car for hours. I get antsy, I just can’t stand it. I especially hate the reason that we have to go to San Diego.
I hate that my daughter has an Eating Disorder (ED). I hate that my Beauties’ summer was the worst. I hate that I’ve spent my summer not at the beach playing with these kiddos; but reading scholarly articles on ED. All that frustration was bubbling as we drove down to SD. I had the same visceral reaction of righteous anger each and every time I went to NIH. I was cranky and not nice. I often say to the Beauties at the end of a long day, “I’m all outta nice, so be careful.” I told them that at 9 am; not the best way to start a 5 hour car ride.
Life is filled with many intolerable, life situations that you have to face. I hate that we have to go to SD, but I also hate that we have to face these challenges--period. As we drove down my anxiety was only heightened by the memory of our last visit. I had asked Norah’s doctor, “What are you worried about?” And her answer may surprise many of you. She said, “I have to be honest; I’m very worried that Norah isn’t growing. Neither of you are short and usually kiddos restart their growing early in the weight restoration process; and Norah hasn’t grown at all in months. If by the next visit she hasn’t shown progress, we are going to need to investigate why--it’s troubling.”
Those words put a pit in my stomach. These feelings of anxiety are so familiar; I know I can go back and read post after post talking about this in regards to my own health. As we drove, I fantasized about jumping out of the car with only my passport, a credit card, and plan my escape to a new location. Maybe I would take Jeff and the Beauties; more likely I would call one of my girlfriends/partners in crime to share my top secret location. As humans and especially as mothers we dream of the escape plan. The fantasy that takes us away from our own reality.
Which is why I laugh when friends say to me:
“Kathryn, how do you do it? You do know you truly are amazing.”
I have heard that so many times in the last several months. But I have to be honest. I’m not really amazing, I’m just a mom getting through just like all of you. And I’m also beautifully human, flawed and imperfect... Remember, I’m the mom all outta nice. That's no joke.
Our life is really hard right now. I’m not going to lie.
From the earliest of my catholic school years, the nuns, priests and teachers taught us from scripture, turn your fears and worry over to Christ. HE can fix anything. My response to that is absolutely, I get it; I know it to be true. My only worry is that his perfect timing doesn't seem to sync-up with mine. Which means; I still walk around worrying when I perceive God has me on hold. Of course, I know in my soul, that the Divine is actively working on me constantly; but lest we forget, I’m painfully human and nothing seems to work on my schedule.
As we prepared for this trip, I knew we would get some good news. Norah would pass from one part of her treatment to the next. In keeping with the guidelines of her treatment team; Norah has gained a significant amount of weight. Her doctors would be pleased with her progress and would classify her as weight restored.
That’s good news, however she isn’t out of the woods. For many of us, when we see a beautiful child weight restored you instinctively want to think-- hooray they are all better. Chances are they aren't. Norah is painfully uncomfortable. Most days she is filled with a huge amount of distress. She still has all the same physical symptoms and still has severe anxiety about eating. As I have shared before, Norah may not be considered fully recovered for at minimum two years.
On Friday, I sat at the table and watched Norah eat a single potato chip in 15 bites. A SINGLE, that’s ONE flipping potato chip, in 15 bites. Which means, I ate more than 15 chips in the time it took her to eat one--sigh. Now translate that to a granola bar, a bowl of oatmeal, 1/2 a peanut butter and jelly sandwich--well you get the idea. Jeff and I are spending hours supporting Norah’s eating. We joke privately that it's like watching the food version of, “Name that Tune.” How many bites do you think it’s gonna take her?!?!? “Jim, I think she is gonna eat that chip in 18 bites.” Sometimes a little gallows humor at night helps ease the tensions.
The technical term for how Norah consumed the potato chip is “micro-biting”. My daughter gets a gold star for micro-biting. If we didn’t make food for her and sit with her--she wouldn't eat. She cognitively understands that without eating she will die. That is a big cognitive leap and a good sign, but the reality is if I forget to make snack or if I didn’t make lunch, she won’t remind me. I’ll let you noodle that around for a minute...
As you can imagine, watching my Irish Princess eat a potato chip in 15 bites is torture. It tears at my soul daily; the anguish at seeing my daughter struggle is soul crushing. Every single day, I pray that I could take her pain; that I could carry her cross, that she wouldn't have to face this demon. I wish I could tell you that I don’t cry in the shower for her, for her brother and for Jeff. I cry occasionally for myself; but my tears aren’t about me. My tears are that this is our life, and it quite frankly is harder than it should be; and that for an extraordinarily long time this life will be measured with before the ED and after. There will be a happily-ever-after ED--that I know for sure, it's just not today.
Each and every day I work as hard as it takes to find one little gleaming pearl... It may be as simple as not forgetting to brush my teeth or getting the laundry done so we all have clean underwear. Some days it’s seeing Norah smile, or crack a joke with her brother. But each and everyday I string another pearl, tie its knot to the one before and set the necklace back down--this life is about perseverance, not perfection.
In the messy we persevere, we do what needs to be done.
Which gets me back to why I didn’t just jump out of the car and head off to the airport. All of the problems in this life follow us. Running isn’t ever the answer; you have to find the solutions to manage the intolerable. What do I do to get through it, well I write-- sometimes I share it, other times it just goes in a folder on my computer. I pray. I tell God--I’m pissed, angry and that it is more than enough time for my girl to suffer and to flipping fix it! I every so often make a superior cocktail, I walk on the beach, I read mind-numbing historical fiction--how fantastic is it to jump into an alternative world; I watch movies with Ian, I laugh with my girlfriends on the phone--and use terrible language. I sit on my back porch and watch the hummingbirds feed from my feeder, I get my toes painted, I read deeply philosophical books on faith. When appropriate; I reach out to my medical team, or consult with my personal mental health goddess--she is a goddess; she is that good.
What I do that may be the most important, is each and every night I look into Jeff’s eyes and ask him with all the love I have, three questions: “Are we good? What do you need? Do we have this?”
And each and every night he kisses me and says, “I love you, we’re good, we’ve got this...”
Those are the last words I hear every night before I roll over and say my prayers of thanksgiving.
That is how I do it... I get up, brush my teeth, shower (most days), find my pearls, spray Jeffrey's favorite perfume, and find my lip gloss and with that; I get to the getting...
Last Monday, we sat in the exam room in Children’s, the door sprang open, sliding into the room with joy and love was Norah’s beaming doctor; her presence filled the room with smiles, laughter and hugs for all of us. Her nickname among the other doctors and staff is the "Colonel". I find it hard to imagine... because she is the most loving force and just who we needed. Norah's doctor sat on her swivel stool looking at Norah and said,
“I’m ready to share with you some very good news.... Norah, are you ready?”
And Norah looked right at her and said, “Yes!”
“YOU Miss, grew almost an inch since I saw you 4 weeks ago and that’s way better than I could have expected! I hope you are ready to start growing A LOT! Because that my friend is about to happen for you.”
In that moment I took a huge breath or maybe just stopped holding my breath; and possibly a tiny, whisper of a tear leaked out of my eye.
All the stress, anxiety, discomfort, and irritation; the battles with ED, the snacks and micro-biting... along with Norah, we tolerated the intolerable and in the mess-- a spectacular creation occurred, another beautiful little pearl...
Norah grew.
As I add this gleaming pearl and tie its knot, it gives me just enough hope, and that hope my Pilgrims gives me the strength to fight another day.
Namaste--The Divine in me bows and honors the Divine in you.
Kathryn
PilgrimageGal
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Photo Credit: PilgrimageGal