Hello friends!!! Welcome to my about page where you get to learn about yours truly. A girl named Sara who has found herself a little corner of the interwebs.
I’m a mother of two amazing kids, AJ & Riley. AJ is my little ball of fire who likes to stop all forward momentum with his noggin. Riley is the strongest person I’ve ever met and has plenty of medical diagnoses, but that doesn’t stop her from being amazing.
There’s this godsend of a man who has chosen to spend his life with me for undetermined reasons. When I ask him why he married me after any given situation where my clumsy self trips, I typically get a “haven’t figured it out yet” response with a smirk on his face.
I’m also a full-time employee working and surviving in corporate America. When I’m not at my day job or corraling kids, I also own and manage Moon Waves Design.
So why are we all here, and how did you find yourself at this blog? Chances are you’re a parent with a child(ren) who happens to also have special needs. Yup, that’s me. I’m a special needs mama, who also struggles with mental health issues, like anxiety and depression; I struggle with health issues (my daughters and my own); I struggle with being an advocate; I struggle with work-life balance (if there even if such a thing as balance). I struggle with life.
You know what? I also love life. I’m finding my way and rediscovering myself. When you become a parent, special needs or not, your life changes… you change. Sometimes we miss who we once were. This page is all about finding yourself and becoming a stronger version of yourself.
We all come from different backgrounds, lifestyles, and were raised differently. That’s ok. It makes us individuals. Yet we all crave to be part of something. A happy family, a great circle of friends, and in some cases, a great medical team. The journey starts somewhere.
My journey began with a great childhood, a totally destructive first college experience, failing miserably at life, then starting to pull it back together. Way back in 2006 I decided enough was enough and started to go back to college to complete my bachelor’s degree. I graduated and landed a job in my field in 2008.
Life was good, I was starting to act like an adult. I got my life together. I started dating my future husband and we soon were engaged. We went out to dinner with my parents and grandmother to announce the engagement and told everyone the date would be a little over a year out. My grandmother told us not to wait that long, that she may not make it until then.
She was right. I was driving from work to pick her up for dinner, and in my typical fashion, I was running late. I called her to let her know that I’d be about 20 minutes, and in her typical fashion, she was angry I was late… again. When I got there, she had experienced either a stroke or a heart attack. I called 911, began CPR, but it just wasn’t enough. I was too late.
That, folks, is where I started my downward spiral. Can you pinpoint your exact moment? The funny thing is, sometimes these downward spirals start off small, unnoticeable. The landing is the hard part and usually doesn’t happen right away, sometimes even years in the future, as in my case.
Over the next year, I got married, got pregnant, had an ectopic pregnancy, got pregnant again, had a relatively uneventful pregnancy, and a whirlwind birth.
We welcomed our fireball, AJ, into the world in the early morning hours in mid-December 2013. He decided he should land with his feet on the ground, he was a breech baby boy. However, I didn’t know that until they had told me to start pushing and the ultrasound tech finally showed up and starting yelling at me to stop pushing. I could make a sailor blush with my language.
I had an emergency c-section at 1:20 am and that was that. My bubba was here. He was in NICU, and the next day had to have a blood transfusion. He was anemic. It’s scary when you get released from the hospital before your child, but the hospital had a room just for that purpose. We were able to stay down the hall from him. He was released a couple of days before Christmas and we got to have his first Christmas at home.
Six months later, we were pregnant again. That wasn’t exactly the plan, but it also was welcomed. TWINS!! My, oh my. I was scared and excited at the same time. I was also high risk, so I was being monitored weekly, initially.
The doctor thought the twins were mono-mono. Found out they were mono-di, visits changed to bi-weekly, and somewhere around the 16-week mark, we lost one of the twins. The day we found out the baby’s heart stopped beating was the same day we found out they were girls.
This was, at the time, the lowest point I have ever experienced. Hearts do break, I felt mine crumble piece by painful piece, just breaking apart. I talk about it a bit here.
My surviving daughter made her appearance into the world 6 weeks early. She also had a blood transfusion, like her brother, though hers was a full exchange transfusion. We found out that she was missing 60% of her brain, due to a stroke caused “by the demise of a twin”.
My warrior is a fighter, but around 6 months, we noticed there was a lot that was not right, more so than they told us to expect. Turns out she has hydrocephalus and a form of epilepsy called Infantile Spasms. She has had two brain surgeries before the age of 1. I hit the proverbial bottom again. Dealing with many different doctors and hospital visits, trying to take care of a family, and still work full time was a major struggle.
Here we are, though. Finding my way, living life, improving life, but most importantly enjoying life. There are things that will happen that you can’t control, don’t let it control you. You can read a little bit on control here. You have the ability to face the storm head-on and dance in the rain. I’m choosing to dance these days because it’s fun and AJ loves to dance with me.
This site is a place for you to feel welcome when others just don’t understand what you’re going through because they won’t. No one will know the load that you balance on your shoulders, but you don’t have to go it alone. Come sit, and have a drink. We’ll get through this together.