The year the world went crazy

It’s been a long time.

I’ve been wanting to write. It’s just that every time I started, I would become overwhelmed with facing reality. In order to write the truth, I have to confront the truth. And the reality is that since the last time I posted, my world…the whole world…got more and more confusing.

I can’t physically type all the details but it started  with having to give Juliana CPR after a seizure caused by an unknown virus. Looking into her blank eyes with utter desperation as I attached her to Brenden’s machines, and let God guide me and Brenden’s nurse to bring her back. Her lips turned from blue to pink again. 

It was my birthday and she was about to give me the surprise cake she made me with Mike…she told me to act surprised but wasn’t acting like herself. Her skin changed and shortly after she was seizing. 

We saw signs but were confused because this isn’t the child that shows signs. She was the “healthy one”. But we saw the signs and thank God that even though it shocked us, we were prepared because of Brenden. 
Emergency responders arrived. 12 of them in my bedroom. Confused by miscommunication to “make an arrest” instead of “cardiac arrest” they tried to detain me instead of helping my baby girl who laid limp on the bed, attached to her brother’s oxygen tank and pulse oximeter. I am so thankful I had gotten her stable enough that their awful mistake didn’t cost us. I’m thankful to the nurse that was there and to the one firefighter that actually listened and freed me as I yelled from the bathroom for someone to please take her to the hospital. 

Flash forward a few days. Juliana is miraculously fine and back home. No diagnosis for what happened besides febrile seizure. Suddenly, I am passing out. Confused. Head pain and neck pain. Doctor diagnosed me with being traumatized from what happened and from my life as a mom to a medically fragile son. I could barely form words coherently as he patted my shoulder and called me “poor baby”. He sent me to a psychiatrist next door with muscle relaxers and antidepressants when in actuality I was extremely ill with an infection causing swelling to my brain. I begged the psychiatrist through my inability to explain my thoughts to help me because I didn’t think I was crazy…just sick somehow.  I needed to get better to take care of my children! He looked at me sadly and did walk me back to the doctor reluctantly. They took a few more tests. A day later, I found out I was indeed very sick. WBC were scary high. Juliana’s issue was never fully diagnosed but mine turned out to be caused by strep. A strep infection that never hurt my throat once.

Fortunately, Mike believed me so I had been quarantining with Juliana to keep Brenden and Mike safe. Juliana and I stayed in my bedroom for a week. When we finally emerged from our cocoon of chicken soup, water, crackers, toys and The Trolls movie…we went back out into the world heavily medicated only for the whole world to shut down.

You all know what happened.

COVID-19.

And from the trauma of everything else, we knew to batten down the hatches. We stayed home and went nowhere. The first 100 days, none of us even went outside except to walk Bailey. It was too risky. We had to lose nurses who didn’t take it seriously. We didn’t see anyone else. We made our livingroom into a ball pit, we moved furniture, we had dance parties and even worked/went to school….but we didn’t dare go outside. I became a physical therapist, occupational therapist, speech and feeding therapist and Mike became a home school teacher/TV editor while I became a remote teacher. We both became night nurses/respiratory therapists/doctors even more so than we were before.  I also continued my religious studies that I had begun the previous fall. While the whole world sat and stuffed their faces out of boredom, we were so busy that I lost over 40 lbs. We didn’t stop moving day after day as we waited for people to stop being selfish. Waited for people to stop complaining about boredom. Waited while people outside argued about people like us…the medically fragile…the high risk…whether or not we are worth protecting. We waited for the world to go back to “normal” as we realized what this world considers normal is not good enough. We desperately waited for the world to find a conscious. We stayed away from everyone we love. Waited while people complained about wearing masks while others were waiting for medical interventions that were on hold. Waited for chance to even get my kids some sunshine while people stood in front of our building, maskless, smoking cigarettes and complaining about politics. 
Long story short, it got to be a bit overwhelming. We moved. Got a yard. Got another dog. My kids can now go outside to play. We can barbecue like a normal family. My mom comes over regularly now and we are on our way to being fully  vaccinated. 

Still dealing day after day with the most insane bullshit you’d ever imagine. We took on the DOE and fought for a fair IEP. You’d think as a special education teacher this would be a easy process, but it’s worse when you know you’re being lied to….but, we won. Then, we took on the system…and personally taught Brenden how to drive a power wheel chair that we didn’t own at age 2 & 3/4 in order to prove that insurance deserves to buy him one. Right in our own livingroom. We advocated with suppliers, with therapists, with nursing. Everything is always a battle because we are still waiting for the world to be a better place. People are selfish and no one gives a shit except a handful. And I am thankful for that handful. 
But I am here. My kids are incredible. Mike and I are stronger than ever. Exhausted but we are here. We put out fires regularly and chug ahead. We barely sleep. And we are at this grind every day for our babies.  They are happy, always smiling and the smartest kids I’ve ever met so we must be doing something right. ❤️