𝕄𝕆𝔻𝕄𝕒𝕕𝕤

Get outside of your comfort zone. Be vulnerable. Put yourself out there. So proud of you, Julian 🩵

Momma. ❤️ Smart as a whip. Funny. Kind. Generous. Strong. Unwavering. Me. Lucky 🍀 I love you, Mom.

It’s simple. I love being Julian’s mom. ❤️

Julian as Sean in “Juvie”. So proud of this student directed performance. Proud of my kid.

I love it when Bazzell sings. @verveline your voice has always been one of my favorites. Keep getting up there and being uniquely you. ❤️ Video by Tim Meegan @fosterthepeople #pumpedupkicks #stlouis

Update on Julian - Things we have learned. We are coming up on one month since the big event and we have all learned so much, about each other, about navigating our health system, my employer based healthcare, copay cards, and the list goes on and on. Julian is doing well. He’s very much looking forward to his first play with a speaking role. He has a great network of friends; they keep him grounded when mom and dad mistakenly treat him like an egg. We’ve learned a lot about each other. I’m grateful for my parents for many reasons; in this moment specifically, for the way they taught me to research from a very young age. For helping me join the, “We don’t guess, we look it up!” Club in the first grade. It’s all been essential at this point in life. He requires a rescue medication. With my insurance it costs, $1,838. I called my insurer for help and the agent pointed me to the manufacturer website and how to get a copay card. It brought it down to $139.99. More importantly she explained it will still run through insurance at the full price, meaning it would help us reach our deductible faster. This photo is how much liquid medicine he needs. This one didn’t work for him, all of this seen here cost, $30 for a 90-day supply. He was prescribed an alternative. A 30-day supply costs, $938.00, also with insurance. I found a copay card at the manufacturer website that will max out at $6,000. It brought the cost down to $10. Starting in September I can use a GoodRX card and get it for $89.99 per month. Someone explain this madness to me. I’ll save the next update to go over the medical bills. Next up, he’s scheduled for an MRI and possible 2 day inpatient stay for a prolonged EEG. This helps determine specifically how he should be treated and can help get to the right combo of medication to eliminate so many trial and error scenarios. I’m sitting outside of his acting studio. I do this every Saturday for 3 hours, and figure I’ll get to a point of comfort to not be this close to him. He walked in with his red Fender Jaguar to accompany his scene. He had a huge smile on his face. I’m going to sit here, under the warmth of the sun and read. ❤️

Today we had planned to celebrate the release of Julian’s first movie, but life has a way of letting you know that you are not always in control. Advocate loudly for your child. We have been chasing a medical issue since November 2024, expressing concern that Julian might have epilepsy, just like his grandfather. I can’t tell you how many times we’ve been dismissed. On Sunday, he experienced an episode and I thought, surely this is what will get him the EEG we have been pleading for. Nope. Quite the opposite. A nurse with a very firm tone, said, “This is not neurological.” Late Tuesday evening, we hear a loud noise coming from the bathroom. Julian fell. He told us he felt like he blacked out but was able to pull himself up. Then, he quit talking, stared at us blankly and that’s when the convulsions started. Thom called 911, I did my best to keep Julian safe and then calm as we waited. Ambulance ride to the ER, he had another seizure. We are placed in a room and I’m thinking, this is when we will get that test we have been after. Neurology consult, neuro doc sides with the doctor notes from our January 13 visit to neurology. This is not neurological. I summoned all of my courage and said, respectfully, we are not leaving here until our son gets an EEG. We have a family history. He had a seizure witnessed by EMS. And still I had to keep demanding. Let’s order one in a few days. No, now. No one can read it until 9:00AM. Fine. I just need the test done within 12-24 hours from the event. Aren’t I correct that this would be the best time to capture what just happened? Yes. Well, why wouldn’t we do that while we are here? Ok, we will order an EEG. We waited for hours. Finally, he gets the test. Confirmed epilepsy. Advocate for your children. Always. Why was this so hard? He had all the symptoms. He had family history. He’s resting at home and getting used to his new medicine; it makes him really groggy. I’m thankful for our family and the best coworkers on the planet. So, the movie released today. He plays, Tommy. We will eventually see it. ❤️

I finished reading, “The Corrections” a few days ago. It’s about capitalism, trauma, and generational misunderstandings, but I have to share, it made me understand my parents better. I loved it. “And when the event, the big change in your life, is simply an insight — isn’t that a strange thing? That absolutely nothing changes except that you see things differently and you’re less fearful and less anxious and generally stronger as a result: isn’t it amazing that a completely invisible thing in your head can feel realer than anything you’ve ever experienced before? You see things more clearly and you know that you’re seeing them more clearly. And it comes to you that this is what it means to love life, this is all anybody who talks seriously about God is ever talking about. Moments like this.” - Jonathan Franzen, The Corrections

In early 2020, Julian had the opportunity to sing at the Let Freedom Sing tribute to Dr. King, thanks to two phenomenal women, Alice Walle, his third grade choir teacher, and Margaret Campbelle-Holman, Choral Arts Director/MET Singers - please look her up- she’s made it her mission to provide choral arts to ALL children. I look at these images and listen to the clips I captured during rehearsals often. Something about the children’s voices and the powerhouse adult choir gives me goosebumps of the good kind. If you’ve never witnessed, “Let Freedom Sing”, I encourage you to do so. The children, the songs, the images, and the connection felt in a room filled with strangers is palpable. I held hands with a perfect stranger who comforted me when I couldn’t stop crying. The brutality of it all. I believe, like Whitney, children are our future. #mlk

When I was a youngin’, I used to flip through my mom’s sketch books often. She’s been sending Glenn and me snapshots of her work recently, and I just love this one; Glenn and I sacked out on the sectional when we were little. We have several of her pieces framed and hanging in our home. @cherylferrer I humbly request the one you drew of me with devil horns on my head. Story goes; I was behaving particularly bad one day and she did what she had to do. 😂😂😂

No cute family photos this year; peep my cozy socks. I was knocked down with a virus on Monday and am still so sick. 🤧 I have never been sick on Christmas before. This virus can kick rocks. I bought 2-ply Kleenex. It was a bad move. I underestimated the phlegm. But, I love Thom. He’s keeping it all going. #momdown #sendmorekleenex #butnot2ply

I’ve always looked up to my dad. This photo of us was taken by my mom, an amazing photographer. I would always match his moves, and she captured it perfectly here. My dad played in a band (The Changin Tymes) in the 60s with his best friends and continued to jam with many friends who shared the love of music long after the band ended. I loved going to listen to them play and would often fall asleep on a random couch letting the beats lull me into a slumber. Thom was making a record in 2017 I think it was and I had recently found myself unemployed. He asked “Quincy” if she would like to join him the studio. I’d been waiting for that opportunity for a long time, but too shy to ask. Quincy is a nickname he bestowed upon me years ago because I fancy myself some kind of a producer. Although Quincy seems like too large a name to give someone like me. I just love music; can’t imagine a world without it. Back to the studio invitation. I had this idea for Thom and I to start a side project called, Fear Baby. He wrote a song and used the name as the title and when he played it for me, asked what I would add. Back to my dad; the man loved Foreigner and we would drive around and listen to their cassette in the car or he would play them at home on our stereo. Foreigner was all I could hear when Thom asked me what I would add. He looked at me like, really? 😂 Yes, trust me…..So I played the keys on this track channeling my dad and Foreigner. Urgent to be exacting in my inspiration. #foreignerband #urgent #seaofstories #thomdonovan