Unexpected Blessings

I was in rare form this morning. Well, let’s be honest, it’s not so rare these days. LOL

After all of the craziness of the last couple weeks, I completely forgot about our Gastroenterology appointment at UCLA this morning. Luckily I had glanced at my calendar last night and caught my oversight before missing it completely. But it made for a very hurried morning as I was 100% unprepared for the day. This meant I had to keep Oliver home from school which makes getting ready for anything extra challenging.

Nicco was in full-on tornado mode from the moment he opened his eyes and Oliver required an equal but opposite amount of attention. Needless to say I was running late getting out of the house. I had accounted for an extra half an hour or so for the 22 mile drive that GPS told me would take 68 minutes to complete. Still, I knew I was cutting it close. So I pulled a ‘Minnie Driver in the opening scene of Speechless’ (Link below)


and employed my rally car driving skills as I raced down the 110 freeway at what might’ve been considered a reckless speed.

One hour and 25 minutes of road rage later I reached the parking garage of UCLA with 14 minutes to spare. I circled and circled and circled and circled to find every single one of the parking spots in the entire place completely full. I angrily jerked the steering wheel side to side, weaving around other, luckier patients, awaiting a car in reverse. Finally I reached the very bottom floor, 2nd to last parking spot with only five minutes left to make it to our appointment. It was a compact spot so I did my very best to jam my full-size pick-up truck (THE most RIDICULOUS vehicle you could possibly drive in Los Angeles) into the tiny space, leaving my neighboring cars just inches to open their doors. I flung mine open and ran around to the tailgate, dropping it loudly with irritation and swearing audibly about such a large medical center having such limited parking. I slipped into a full-on rant, complaining aloud, mostly to myself, but also to anyone who might be listening, about the traffic, the stupid drivers and how this fucking life gets so irritating sometimes. At no point in my tirade did I mention my own severe lack of time management skills… I suppose I figured that was implied. LOL

Out of the corner of my eye I could see a father walking up with his young daughter to the car next to me. I avoided eye contact but prepared for an altercation as my excessively large vehicle would make it difficult for him to squeeze into his reasonably sized car. But to my surprise, despite the fact that I was still ranting loudly under my breath, he smiled at me and said, “Looks like you have your hands full.”

By this point I was shaking was frustration and adrenaline and his kind demeanor caught me by surprise, nearly dismantling the emotional wall that was holding back my tears. I swallowed the lump in my throat and smiled back managing, “I sure do.”

He continued making pleasant conversation as he squeezed his daughter into his car and as I piled everything on Oliver’s wheelchair and my back in a precarious attempt to somehow carry all my shit. He oozed understanding and the validation he offered to my struggle melted the frost off my icey heart.

I hoisted Nicco onto my back and he smiled again wishing me a great day. As I ran through the parking garage pushing Oliver’s wheelchair, attempting to make the ride as smooth as possible for the little jockey riding upon my back, I felt deep gratitude for this man’s time and the compassion he had shared with me in my moment total unconsciousness.

We arrived at the elevator where a man held the door for us. Friendly people made room and smiled with delight at Oliver’s excitement on the ride up. I was greeted by a kind receptionist who didn’t rake me over the coals for my tardiness. The check-in and intake flowed seamlessly and as we settled in a room to wait for the doctor, I let out a sigh. We actually made it. First battle won. Now, for the second, withstanding the wrath of this new medical community.

Most doctors who see Oliver are shocked and dismayed by his small size. They harp on the numbers and percentages and by the end of our visits we are often at odds instead of working together for the common goal of my child’s optimal health. I tend not to worry about his weight or his short stature much anymore. I let that go a long time ago. I feed him a vibrantly healthy vegetarian diet of organic fruits and vegetables, grains and legumes. His skin is clear and bright, his hair is shiny, his nail beds and gums are pink and other than his chronic conditions, in my perception, he is healthy. I could do better by supplementing his oral feeds, being more consistent with the vitamins and staying on a better hydration schedule. But overall, I have fought for years to keep him off processed formulas and drugs and have made decisions for his health the same as I would make for mine. Unfortunately, in the allopathic medical community a holistic view of health is often unwelcome.

Although I certainly have not done everything right, I do pour my heart and soul into Oliver’s care and always have his best interest at heart. It is frustrating and deeply offensive to encounter medical staff who seem oblivious to this devotion of care, judging health and success only by the numbers on a scale.

So today, again I readied myself for battle. Donning my coat of armor, I rehearsed my defense silently until the doctor arrived.

When the door opened, to my surprise, in walked a man exuding gentle energy, with salt and pepper hair and kind smiling eyes. This is not what I was expecting. He smiled, shook my hand with a genuine embrace and said, “You must be mom. It’s so nice to meet you.” I nodded, still bracing for impact as he would now scrutinize my parenting while he poked and prodded my small child, assessing his fat reserves.

But that’s not how it went at all.

He walked over to Oliver and asked for a high five. He then smiled, and glancing back at me he said, “Mom, you’ve done a great job. He looks amazing.” I was caught so completely off-guard that I barely managed a thank you. In my head I was thinking, What do you mean he looks amazing?? Like for real? You actually think I’m doing a good job? I don’t get it. Are you lying? Is there a ‘BUT’ statement coming?

The rest of our exchange was friendly and he was absolutely supportive. He finished his exam and again told me that I was taking great care of Oliver. He offered to send the dietitian in and although I had serious hesitations, I agreed because the appointment with him had gone so well.

Just a few minutes later two dietitians entered and again I prepared for a confrontation that never came. We had an amazing conversation about the health of a blenderized diet, how they preferred organic whole foods formulas and how it’s not fair to hold kids like Oliver to the same standards as their typically developing peers. They said all the things that I have said to the doctors over the years but this time it came from them. They were 100% supportive.

I told them that I had been stubborn over the years, stuck in my grief and refusing to depend on Oliver’s tube for his nutrition. I shared with them our desire for him to sustain his life through oral eating and how during his recent hospitalization for double pneumonia we had had to make some difficult decisions about that choice. They were fully supportive, patient and kind throughout the entire appointment today. And at the end of our 45 minutes together we all left the room with smiles on our faces.

I wanted to hate my experience at UCLA today because it’s far from our home, there are lots of freeways and traffic to navigate and it doesn’t feel easy to get to. But I loved it. It was wildly refreshing to receive support and validation like this from a medical team.

As I exited the elevators into the parking garage, now in a much calmer state of mind, I marveled at how a day that had seemed destined for disaster, had actually gone amazingly well. I reflected on the abundance of energy I had wasted in worry, anger and readying myself for battles that never came.

So often we become immeshed in stories that we tell ourselves.

This day is going to be awful!

I can’t possibly make it on time.

Doctor’s don’t understand me.

My life is one continuous battle.

Or my personal favorite, The universe is obviously conspiring against me.

But these stories aren’t true. They are an elaborate ploy by the ego to keep us suffering and in a constant state of unrest. In my more peaceful moments, I know this to be absolute truth. But these periods of stress repeatedly rip this logic from my mind and thrust me back in to reactivity and hate.

Today was a great reminder that although it feels like I am forever battling with the world, that really isn’t true. Blessings come my way each and every day. Often I just don’t take the time to count them.

Complaining and negativity are my default. And although I know they don’t bring actual ease to my life, in the moment, they seem easier. But nothing good comes easy right? So tomorrow I will drag myself back out of the funk in which I fell and keep trying until gratitude and positivity become my way.

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