Fun fact-

Those specialized appointments and pediatric services that deliver diagnoses and answers... that are supposed to give us clarity and peace of mind... well, they all have one undeniable thing in common- THE WAITING LISTS... and they can be stupid long.

If you have ever heard the phrase "hurry up and wait", this would be the scenario for that idiom. So many parents find themselves in a situation where a concern with your child's health may arise, and you can pretty quickly get an appointment at your child's pediatrician's office- BUT- when said pediatrician expresses a concern that may be "out of their scope", you are referred to a specialist immediately then, only to wait months and months to finally, at long last, get in and be seen. That, my friends, is a very anxious and nerve-racking place to float for a Mama or Daddy. Sorta like wading around in a bayou down in Terrebonne, halfway submerged in murky water and you don't have a clue what might be swimming around, brushin' past your leg. You gotta really try to stay calm. So many of us get tired of the waiting and of the increasing worry of the unknown, that we make that classic mistake- in our urgency to figure out what the hell is going on with our kid, we go log on and ask good ol' "Dr. Google".

Don't get me wrong- google and other search engines have made life really easy and convenient for us, and provide us all with a wealth of knowledge with just a click of our curser; but, it can also lead you spiraling down a rabbit hole of misinformation and inaccurate data, based on opinion and theory, without any actual facts or evidence to support it's claims, and in the matter of minutes, we have misdiagnosed our child, and we are tail-spinning into a full-blown psychiatric melt-down or deep dark depression. DO YOURSELF A SOLID- PLEASE DON'T GOOGLE IT. Unless it's reviews on the newest RIDGID 18V brushless oscillating multi-tool, don't google it. When it comes to a medical issue or diagnosis of a loved one, it's going to be in everyone's best interest to just hold out until you get word from the Doctor- and DON'T GOOGLE IT! It's not always black or white, cut & dry. Just because it might moo like a cow, or quack like a duck- don't make it a cow or a duck. Seriously- that's actually facts- based on the voodoo of nature herself... just watch the YouTube videos of those cray Lyrebirds in Australia who mimic the sounds of chainsaws and gunfire, in a otherwise quiet and tranquil rainforest... you cannot tell me that ain't some voodoo! For real- look that video up... 😂🤣

Anyway, I feel like it took forever for us to finally get to our appointment day with the Pediatric Neurologist we were referred to. We were in the city of Greenville, SC, about a 40 minute drive from our little town where we live, on the outskirts of Clemson. The hospital building was bigger than our local hospital and it took us a little time to find what floor we needed to be on. We finally found the right place and got checked in for our appointment. As Rylan, his dad and I took some seats near the window of this nice, big waiting room area, I couldn't help but observe everything around me. The artwork hanging on the walls was bright and cheerful, and next to the artwork, were smaller frames with diagrams and labeled anatomy of the human brain. A big TV screen against a wall played cartoons and children's sing-a-long songs, and on the TV table to the side, were clear brochure holders, with pamphlets, titled things like "COGNITIVE DELAYS- Can Your Child Outgrow Their Limitations?" and "Genetic Basis of Epilepsy" and "Understanding Your Childs Brain Injury". I noticed the EXIT signs, the light switches, the restrooms, the fire sprinklers on the ceilings, the "clouds in the sky" covers that were over the long, flat, flourescent ceiling lights. I noticed the paint color of the walls and the carpet designs on the floor. I noticed the children there in the waiting area too, who like us, were patients, and waiting to be seen. As I watched these babies smile and interact with the world around them, for the first time in months, my worry actually began to lessen and my heart lightened. I watched these sweet babies with obvious deficits sitting in the laps of their mama's and daddy's, stacking blocks, flipping pages in books, sitting in their child sized wheelchairs parked in front of the tv, clapping, smiling and singing along. That was a pivotal moment for me- the moment that I realized that whatever the news was that we were about to hear- it was going to be fine. WE were going to be fine. We could deal with it. These children had given me a new perspective in only minutes of being in the same room with them. All so sweet and happy, much like my boy, and I knew suddenly in my Mama's heart, that it didn't matter what was going on with Rylan- we would figure it out and be blessed. Just then I heard someone call out my son's first and last name- the nurse was calling to take us back... We were up. Our lives were about to change forever with the news we were about to receive, and little did I know, I was about to be given no other choice other than to get really comfortable with my newfound perspective...

Some moments when recalled, play out a lot slower in your mind than how they actually unfold in real time. Thinking back on it, there is almost a slow motion to the memories as they are forever burned into my mind... I remember us being escorted into a doctor's office room and the nurse closing the door behind her and how I wished she would have left that door open because I felt really hot and claustrophobic in there all of the sudden. I recall a few minutes later when there was a light knock on the door and then watching our doctor come in and exchange pleasantries with us as he sat down at his computer on wheels. I watched as he rolled his chair forward and began to log in to the computer, and then as he started to pull up the images from Rylan's MRI brain scan. I remember him pointing to the screen and directing our attention to a specific area on the image. Neither one of us, myself or Rylan's dad, really knew what exactly we were supposed to be looking at. The doctor then nonchalantly turned and looked at us and said "This is where the stroke occurred".

Yeah, dude got right to the business.

PAUSE. LONG PAUSE...

Okay... maybe there was no pause- I don't really know, I can't really say, but I know that for me, in my existence in this physical world, there definitely was a pause- a moment in time where the whole planet ceased to spin. My brain couldn't process the words this man had just spoken-that formed the sentence that my auditory system had just relayed through my auditory canals-as my auditory nerves sent signals to my brain. My Wernicke's area, the area in our temporal lobe which connects to neural pathways, and the area responsible for comprehension, was freeze-framed. It took a minute.

I can honestly say, I NEVER EXPECTED THE DOCTOR TO SAY THAT. Who would???

"Excuse me, sir- Stroke?"

"Yes- your son, based on what I can tell from this scan, suffered an ischemic stroke in his left temporal lobe, most likely sometime around the fifth month of your pregnancy- I'd say sometime around 20-24 weeks gestation. I know this because of the size and placement of this stroke area, and by your son's muscle tone and weakness in the affected area of his body. If Rylan would have had this same stroke, a stroke of this magnitude at birth or after, it would have completely paralyzed him and this would be an entirely different appointment, dealing with an entirely different situation."

Sooooo.... I'm well aware, thank you very much, that I'm not the poster child for perfect mental health- and I'm not claiming that I cope in the healthiest ways. I compartmentalize things. Some therapists think this is a normal way to deal with deeply stressful, emotional traumas. I have more compartments than I'd like to admit...

It is deeply painful for me to call back this day- to pull the file I've shoved way in the back where I have stashed all the details of hearing the news that my baby had suffered a perinatal stroke that debilitated him. It is not an easy thing to recall that feeling of fully realizing that my son came into this world at a disadvantage, and remembering the feeling of every biological instinct inside me as a mother firing off and kicking in, in this primal, protective, all-consuming way. I remember looking down at my little boy, sitting happily and calmly in my lap- seeing his sweet face smiling and thinking "My God. How? You have no idea do you? Thank God." 15 years later, I still see that same little face when I look at my son. 15 years later, I still sit in doctor's office's and think silently to myself "Why the hell my kid? Why any kid? This isn't fair". But what is "fair" obviously doesn't matter- strokes, disabilities, mental illnesses, tumors, cancers- none of these discriminate. It doesn't matter the number in your bank account or on your life, shit evidently just sometimes happens.

That is really all I can specifically remember from the day we received his "diagnosis"- I couldn't even tell you if Rylan's dad and I spoke any words in the car on the ride home. It's kind of a blur.

Oh, and what is the "official diagnosis" for a stroke before you are born?, one might wonder or ask... I'm assuming it's the obvious "perinatal stroke", but our kids "disability" was given the "formal" label of "Cerebral Palsy".

So, after all these months we finally had got what we came for. Now we knew what we were dealing with- or at least we thought we knew.

I had questions- A gazillion of them.

I had anger- A qualifying shit ton of it.

I had worry- An immeasurable amount of it.

I had guilt- A misplaced helping of it.

I had grief- And I didn't even realize it.

So, because I am who I am, and I appreciate and require some modicum of control over my life (I am a self-professed control freak), I did the only thing I could do when you are dealing with something that is 1000% completely out of your control- and something that you don't really understand a lot about- when something scares the absolute hell out of you: I EMBRACED IT. I decided instead of living in a state of ignorance, fear and denial, I was going to embrace it. Accept it. Understand it. Learn it- up one side and down the other. I do nothing halfway- I'm either ALL THE WAY IN or completely out. I went all the way in- reading every case study and medical journal on prenatal stroke, looking at every statistic, trying to find any information on other children who have had this same unexplained, rare stroke. I learned at that point that the word "rare" I had heard so much at all our recent appointments, wasn't exactly the correct term- "uncommon" was really more accurate. I realized quickly that I had a lot to learn and I was feeling quite studious. We were dealing with something I had never imagined we would be, and I wasn't going to let my little boy down. I was preparing like this was the most important, vital, final exam of my life, and no matter how many coffee- fueled all-nighters it was going to take to pass, I was determined to ace it.