For someone who wants nothing more than to write all the time, I have been stuck for a couple weeks now. My ego and my heart are fighting so much that I can’t hear which is behind the console.

“That sentence is awful”

“You need an editor”

“This is not good enough to publish”

“Why did you think you could do this?”

My trauma brain would like me to seek approval and permission to share our life; to be deemed worthy and special enough for people to pay attention. My fear of hateful comments and mean-spirited people have given me a comfortable blanket of protection from failing. The truth is that fear is much more comfortable than vulnerability.

“It’s not like blogging is a real job that will pay you anything…” says my ego.

For a long time, I believed that if my writing didn’t have the potential to generate an income, then I was not actually fulfilling my dream of teaching yoga and writing. Yet, here is where yoga and life intersect. Yoga teaches us “non-attachment” because attaching yourself to anything is the root of suffering (paraphrased from Yoga Sutras). Release the attachment to the financial component of the writing and just write because it is your dream. Release the attachment to the approval of an audience and create the life of your dreams.

This is not another mom blog. This is not just sharing our family story on YouTube and other social media outlets. This is the creation of a community of people who need other people for support; what social media was intended to be.

When Max was a baby, I did not fit in with the spina bifida support group; my child could crawl and walk.  I didn’t fit in with the parents of a deaf child because Max’s hearing was inconclusive. I tried the special needs support groups, but when your child’s needs are all on the inside, you feel like you don’t belong there either.

I want to create a place for all of us “in the middle”.

Maybe you will see parts of your story reflected in ours and through that, you realize you are not alone. But how do you shelve fear and move forward? How do you take yourself out of the shit spiral of the ego and firmly ground yourself in love and the present moment? I have paused writing multiple times to bring myself back to right here, right now. Planting my bare feet on the ground and breathing in and out is the only way to center when you spiral. My hope is that you turn here for help.

When a baby is born with a known genetic condition or diagnosed with one early in infancy, the parents are provided with a lengthy list of resources to become educated caregivers. For a while, I joked that Max was our human equivalent of a “lemon” car. Every single time we brought him in for a tune up, another major malfunction was diagnosed, and all discussed repairs would be extensive. What is so incredibly unique about Max is that his story is unfolding now, in real life, in real time and I have the unique opportunity to write about it. Taking feedback from others to heart, I have decided that writing about Max and our story is exactly what I am supposed to be doing.  

There is going to be a gap in posts that will be filled in along the way. We went from zero appointments and “all is quiet on the Western front”, to multiple appointments and tests weekly. Over the course of six months, Maxwell has had twelve appointments to include ultrasound, MRI, bloodwork, and urine culture testing.

In the summer of 2024 Max identified intermittent foot pain. It was difficult for him to describe it, but it seemed as if the pain was hot and tingly, some relief with deep pressure. This prompted a visit to neurosurgery, and to determine whether or not Max’s foot pain is tethered cord syndrome or growing pains, it became necessary to schedule appointments with every provider that he sees. Each specialty will be its own post, to catch up and understand context.

Neurosurgery is who drives the bus at this point. Max’s spinal cord is tethered to a mass at the base of his spinal cord. As he grows (which is delayed), the cord may or may not stretch. The parts that have been untethered can re-tether and if the cord is released completely (surgically), Max will lose all bowel and bladder control. This will become necessary if the pain becomes debilitating. Dr. Martin, the Neurosurgery department head and our favorite doctor, wants to try all kinds of interventions before we discuss surgery.

Time to place a call to the bullpen and call up our team.