In all my years, I never envisioned living life with steadfast grief. Not grieving the loss of a child. Grieving the loss of the life I saw for my child. Grieving the loss of the life I envisioned for my family. I am the firstborn...type A...the rule follower...a closet organizer. I appreciate and crave order. But grief has no playbook. And it leaves behind one hell of a mess. Denial Zella the zebra came into this world in mostly the same way as her older three siblings. There was no fanfare upon delivery, just another silently breathed prayer of thanks followed by a slew of sleepless nights and tongue-tied nursing struggles. The diagnosis that followed her arrival nearly 18 months later caught us off guard. We were determined to make the most of it, and honestly as an ... [Read More]
ADNP syndrome
CPAP Therapy & Your Neurodiverse Toddler
We recently started implementing CPAP therapy with Zella, our four year old with ADNP syndrome. Although the following probably only appeals to an incredibly tiny segment of the population, I thought I would share some of the information we have gleaned in going down this road less traveled. Zella’s History with Obstructive Sleep Apnea Zella has mild to moderate obstructive sleep apnea. She was first diagnosed as a two year old after a particularly interesting (read: HEINOUS) sleep study. (Shoutout to Jake for suffering through that one.) Find more information about Zella and her ADNP syndrome diagnosis here. At this age Zella was averaging about 2 apnea events per hour of nighttime sleep. A sleep study one year later at age 3 further confirmed this diagnosis with similar ... [Read More]
Life is Hard. Then You Die.
Sometimes the problems of this world are all just too much to bear. You are laid off at a job you adore...You get a call from the principal about your kid's behavior... You make a bad investment and are out hundreds or thousands of dollars... The list of bad days goes on. And on. And on. And then it happens. You find yourself in a public space. Perhaps it is a doctor's office waiting room, or an elevator. You overhear a story. A young wife lost her husband to gun violence.A son discovers both his parents are gone in a tragic accident.A mother watches her daughter slowly die in hospice care. Suffering I grew up at the peak of wealthy, WASPy, American privilege. Despite being raised by nearly perfect parents, being grateful for what I have is not something that comes ... [Read More]
Another Year of ADNP Syndrome
As we head back to school this week, I am reminded yet again of the truly amazing team of physicians, therapists, teachers, and babysitters that surround Zella daily. Thanks to their encouragement, in the last few weeks of summer Zella has hit milestones we never believed she would reach, namely walking. Simultaneously she has struggled with new self-injurious behavior, but team Z has pulled through and everyone is working hard to cooperatively manage these new challenges. Zella is loving her new preschool program at Apparo Academy. Teachers and staff have already gone above and beyond to make her feel right at home in her new space. If it takes a village to raise a child, it takes a sprawling metropolis to raise a child with ADNP syndrome. The only way to fully recognize the ... [Read More]
Summertime in Augusta
Nothing says summer like hitting 101 degrees A few days in to an amazing #Steichler vacation with our long time friends, just when I thought our life was finally slowing down, we got the call that our oldest had booked another acting gig. We were shocked and excited...especially when we found that he would begin filming less than a week later. Fast forward a few days - I managed to get 4 sitters to cover our atrocious post-vacation schedule. These sitters are amazing. Literally could not do life without them. Cole is having an excellent time and has the privilege of working with yet another amazing cast and crew. He turned 10 on set and stated it was "better than any birthday party!" The Georgia film industry has provided him with so many wonderful opportunities that he ... [Read More]
Our Single Best Purchase
As a shopaholic, I have bought my fair share of products both awesome and hideous. Cheap and expensive. Gorgeous and meh. And oh, the rationalizations... "We'll use this 400 million times.""It practically pays for itself.""How innovative!""That sale won't last long." "No doubt this will sell out again." My bad habits are nothing if not predictable. So when Jake and I started seriously discussing putting in a swimming pool at the house back in 2016, only a year after moving back to Augusta, I made my pros & cons list. Pro I will suddenly have time to take up reading...in a serene outdoor settingour kids will spend time outside and away from electronicsI will entertain like a pro, throwing fabulous parties and playdatesour kids will become Olympic swimmers, each ... [Read More]
