I’m sitting in the front room of my house, early morning sunlight filtering through the big picture window. It looks like the sun has decided to shine today. I’m impressed by this now – the sun’s insistence on shining despite the whole world falling apart. I hear the meaty footfalls of my three year old and turn to find his giant blue eyes and flopping curls in front of me. He’s holding a slightly sticky Superman action figure and smells of syrup.
“Mama, where is Bubba?” He knows where Pea is, but he still asks me over and over again. I understand.
“He’s still at the hospital at his super special overnight camp for his anxiety!” I wonder if the false cheerfulness in my voice is perceptible to him and then push the thought out of my mind. Again.
“Yes. He’s got a sick spot in his brain and he’s getting better so he will want to play with me again. We will play superheroes when he gets home.” He nods at me as though he is convincing both of us. I gather him into my arms and we perch together at my desk, looking out into the quiet front yard, watching the world carry on as though nothing has happened.
“Yes, little cub. That’s exactly right. I can’t wait.”
I’ve sat in my chair endlessly in the wee hours of the morning, pondering this moment. I’ve wrung my hands while intense, blinding fear washed over me in crashing waves. Pea was admitted into the hospital a couple of weeks ago and spent four days and three nights having his medication changed and participating in intensive therapy to help him take control back from his anxiety.
Do I share what happened?
My social media accounts stood silent for weeks while I lost the battle to make him better. I’ve had a crash course in grief. What will I say? What will people assume? What if Pea loses friends? Everyone knows that Pea has an anxiety disorder. I’ve shouted from the rooftops on so many occasions that mental health should NOT BE TABOO. But that was before I had to use the word “inpatient” in a sentence. Can I talk the talk and then walk the walk? The answer came to me on what would end up as Pea’s last night in the hospital. I had just finished dressing down a nurse in GLORIOUS SPLENDOR and was flip flopping down the long, sterile corridor that connects the “Child and Adolescent Psychiatry Unit” to the other properly sick kids with illnesses that DIDN’T deserve a locked door hidden in a corner of the top floor.
Yep, it was right about then.
I found myself smiling through my tears because HOT DAMN, this is what I’m supposed to do. I’m not going to be quiet. Honestly, I don’t think I’ve been quiet in my entire life, so why start now? I have a whole bunch of precious kiddos to stand up for and THOUSANDS of parents who need to hear me say that WE ARE ALL OKAY. And much more importantly, I have society to educate. And society turns out to be a lot of people, y’all. I’ve got to get busy.
I referenced “dressing down” a nurse, but I want to tell everyone right off the bat that Pea was cared for by an AMAZING TEAM OF SUPERHEROES. We are BLESSED to have access to such wonderful care and his team of doctors, nurses, therapists, and specialists are life savers and TRUE heroes. The field of pediatric psychiatry has to be the hardest specialty to decide to go into, which would explain the HUGE shortage of doctors and nurses in the field. I’ve seen things in the past few weeks that made my heart hurt so badly that I couldn’t find my breath. And I’m not talking about Pea. There are some sick babies out there and these people come to work every single day and take care of them when there’s nowhere else to turn. Mental health disorders are fickle and insidious and the same chemical imbalance presents completely differently from patient to patient. I can’t imagine doing the job those angels do day in and day out. They have my HEARTFELT AND ULTIMATE RESPECT. We would not be here today, on the road to feeling better, without them. And I’m going back to Pea’s very first diagnosis at age 3. These people are the very definition of selfless.
That being said, we’ve got some BIG ISSUES, AMERICA. The mental health system in our country needs an OVERHAUL. A “tear it down and start over” overhaul. I’ve decided to talk about that. I know you’re shocked. I’m generally SO reserved. Ahem.
Today, I’ll start with one fairly simple concept that I want to lay out for you. This is my first post on the topic and my “outing” of the fact that Pea was hospitalized for 4 days. So we will stick with just this ONE issue.
I FEEL LIKE I AM OUTING US.
That is utterly and completely ridiculous. If Pea had been diagnosed with a brain tumor, or the “C” word that I can’t even utter, or suffered a traumatic injury, I would have rushed right to Facebook with a plea to all of our friends for prayers. I would have kept everyone updated constantly, posting test results and lab findings and surgery times . Pea would have been nestled in a hospital room just around the corner from the giant castle decorated atrium, his room bursting with balloons and stuffed animals and get well soon cards. Visitors aplenty would arrive with gifts, love and well wishes – if he was well enough to receive them. There would have been trips to the adorable play rooms as he felt better and fresh air at the elaborate playground off the main entrance. There would be walks down the halls and high fiving nurses and cheer because it’s a children’s hospital and they do such an amazing job of making it not so scary for the children who have no choice but be there for treatment.
THAT IS NOT WHAT HAPPENED TO US.
We sat ALONE. We were scared and hopeless and hopeful and worried and prayerful and ALL THE THINGS…and we were well and truly alone. I hemmed and hawed over every single word I said to anyone, fearing that having to be hospitalized would mark Pea for life to everyone around us. Word travels fast, after all. Pea isn’t violent or scary or “a danger to himself or others”. No, wait. That’s false. He IS a danger to himself…in the sense that OCD and Anxiety are ruining his childhood.
He was first enrolled in the Partial Hospitalization Program, or PHP as it’s called there. It’s the same program that he did last August that I wrote about on this very blog. This year, it wasn’t helping fast enough. He barely made it through school and we quite literally heaved ourselves over the finish line by the skin of our teeth. He was so anxious that he was making himself physically sick. We just found out that he officially has OCD in March and I’ve learned quite a bit since his spiral downhill started. OCD is not just about locking a door five times. The “O” is for obsession and Pea has obsessive, intrusive thoughts around the clock that will not let him be. His thoughts tell him that he’s not good enough, his school work is horrible, his friends must not like him, his parents probably wish they had a different son, etc. The problem that brought us to this point is that Pea tries desperately to hide it. He won’t share what is spinning in his head All. The. Time. He plasters on a smile and tries to fit in. He tells jokes and makes up silly words and tries to hang on while he’s dying inside. And everyone buys it. Sadly, he’s even fooled me before. My Pea was born with a chemical imbalance in his WONDERFUL brain and put simply, he needed new medicine and better therapists that specialize in OCD. We want him to be able to go back to school in August and BE OKAY. We found out that he needed a complete overhaul on his medication and LOTS of therapy from a team that specializes in acute care – people trained to hit the reset button when things are BAD. We got everything we needed. He’s home and feeling much better and we are doing the hard work now of attending new therapies and trying new methods and FIGHTING to teach Pea’s brain to unravel everything in his head and rewire it correctly.
But let me tell y’all something else…my son was born with a very unfortunate illness when it comes to sympathy and support.
My son has an illness that isn’t supposed to be talked about.
My son has an illness that we are supposed to cloak in darkness and share privately with the fewest people possible.
My son has an illness that is judged by an ignorant society because it can’t be seen or touched, because he’s had enough therapy over the last six years to generally present himself well, because he’s brilliant and funny and occasionally talks too much and if it looks like a normal 8 year old, it must be a normal 8 year old. I do not say that with anger or hate…I was once the ignorant person through no fault of my own. In our country, we have public knowledge about so many diseases – but when it comes to mental disorders, the only “awareness” is from those of us who have no choice but to be “aware”.
My son has an illness with symptoms that are behavioral and therefore it is an illness unworthy of support from the village. He has an illness that we are carrying him through, one day at a time, one hour at a time, by ourselves. This should not be, friends.
And so I’m here. I’m standing up tall and telling you that my fabulous son lost a battle to his anxiety and OCD, but he WILL NOT LOSE THE WAR. I’m telling you that he was in the hospital and he’s doing MUCH BETTER, thanks for asking. I’m telling you that we don’t need any dinner deliveries, but I might need a sitter for Little Bear occasionally. I’m telling you that I’m NOT AT ALL ASHAMED that Pea was born with a chemical imbalance and he fights it all day, every day, LIKE A ROCK STAR. I’m telling you that he might not ever want to go to a huge party or compete in sports or be class president, but he IS an amazing kid, fabulous friend, and the best and bravest person I’ve ever known.
If someone finds Pea’s hospitalization a reason to distance themselves or their children from him – that is a MONUMENTAL loss for them and, quite honestly, doesn’t mean one damn thing to us.
If there is ONE thing that I will accomplish as his mother, it will be to instill in him that WE ARE NOT EMBARRASSED OR ASHAMED of his diagnosis and NEITHER IS HE. He is not defined by this illness, but he IS defined by the battle he fights and the BRAVE WARRIOR he has become. My son is going to grow up and become a champion for pediatric mental health disorders and a voice for all the little ones who have to put one foot in front of the other and walk into that hospital unit buried in the back corner of the hospital – just like he did. I know this because he told me. And I believe him. If you don’t know him, you should. He’s a big deal.
If this ever happens again (God forbid) – I’m putting it on Facebook and posting updates and asking people for prayer chains and laying it all out there, just like any other illness.
I certainly can’t demand change without BEING THE CHANGE MYSELF.
I’d love for y’all to join me. Tell your stories. Be brave. It doesn’t help to sit in front of picture windows and wish that people understood.
You have to TEACH THEM. Dr. Ross Greene, a pioneer in child psychology who is fast becoming my hero, has a mantra: “Kids do well if they can”. I believe the same simple (yet incredibly profound) concept can hold true for all of us. Generally speaking, society will be kind, helpful and understanding to the plight of our kids IF THEY CAN. That means that we can’t expect them to read our minds and innately have knowledge that they’ve never been given.
And so here I stand, dusting the cobwebs off my idle blog, telling you the truth. He fell apart. He went to the hospital. He’s doing much better. He’s playing superheroes again…
AND HE IS ONE.
Pea and Little Bear today