We still have not reached Max’s second birthday.

Back in Max’s infant days, we took Carly to an eye exam with a specialist at the recommendation of the pediatrician. Sometimes it was hard to believe we had more than one child back then. While there, I asked the Dr. to look at Max’s eyes because another “little thing” I noticed was that it appeared as if his pupils were not entirely closed. The eye doctor examined Max right then and there, diagnosing him with bi-lateral iris colobomas. At this point, the eye doctor does some fancy footwork to determine if the coloboma reaches Max’s retina. If that’s the case, Maxwell could be blind; this was not the case.

The status of his vision as he grew up would be unknown, however, the Dr. was confident Max should be followed very closely. Not only did the doctor address my concern for Max’s eye formation immediately, but educated me, saying that children with iris colobomas tend to have underlying genetic reasons for them and we should consider seeing genetics. Through Max’s eyes, he literally saw a layer of his being that we could not.  Without his compassion, time, and patience, I don’t know how long it would have taken to start uncovering these mysteries.

At one time, the pediatrician and I discussed these brown swirls I noticed becoming more pronounced on Max’s body. The same “it’s nothing” Dr. was not concerned with Max’s spots, and at one point tried to rub them off his skin with an alcohol pad, questioning if the color of his outfit was seeping onto his skin.

In a pre-pandemic world, we were able to get Max a dermatology appointment relatively quickly. At this appointment, we learn that Max has what is called “linear and whorled nevoid hyper  melanosis” that follow the “lines of Blasko”. This means that somewhere early on in the development process, Max’s skin swirled normal cells with abnormal cells.  

We eventually have our genetics appointment, and the Dr. believes Maxwell could have CHARGE syndrome; testing him for a variety of gene abnormalities. CHARGE is a syndrome that results in colobomas of the eyes, heart defects, a blocked or abnormal airway through the nose, small genitals, short in stature, with reproductive concerns as well. Results can take upwards of six to eight weeks; two to four months.

We have a toddler and a preschooler at home. We both work full-time. We spend an obnoxious amount of time in the “dark”. We have no idea what to do or what to read. How to plan, how to wait, we know nothing. We are navigating a new world, blindly.

I am a mess.

Every single day I pretend this is not the biggest concern in front of me. Every day I have to act as if this is all going to be ok, when I feel in my gut that something is not ok. On top of this and the “typical” chaos that accompanies any family with little kids, we are drowning in the stress of working opposite each other, paying our obnoxious bills and struggling with securing babysitting that I can be comfortable with.

After the excruciatingly painful weeks of waiting for the genetic tests to come back, we get a call for the results. Anxiously pacing outside with the dr on speaker phone, they found… nothing.

Big, fat, zero.

Speechless. How… the… fuck?!?! Every single doctor we have ever seen has talked about the importance of genetic testing and the answers that could come from it. So that’s it?

We learned the next step was to send Max’s genetic sample off for further testing and to submit samples from Ian and me. We know Maxwell most likely does not have CHARGE syndrome; however, we are referred to cardiology to be sure Max’s heart is in working order. I mean we’ve come this far, why not add a few more specialists to the schedule?

We have an appointment at CCMC cardiology. I have no idea how to balance all the things that I am. I am taking sick time from work the second I earn any at work; in less than eight months I have been to more doctors for my baby than I had for most of my adult life. This was a very lonely place to be.

As Max continues to participate in daily activity, his physical therapist and I recognize that something is not quite right. Max is an awkward walker; however, he seems to be dragging his foot when he walks. Holding out hope that this was temporary or a toddler glitch, we are back in neurosurgery… scheduling another sedated MRI.

Max’s MRI shows a pocket of fluid in his spinal cord that is prohibiting routine spinal fluid flow and function. This is causing Max to drag his leg to walk.

He requires another surgery.

AAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!

Six months after the first one.

The neurosurgery team will drain the fluid pocket, which is called a syrinx, and place a stent in his spinal cord to prevent the fluid back up from happening again. Syringomyelia is what Max is diagnosed with. While in surgery, the team will try to release more of the cord that can be freed without compromising his bladder and bowel function.  After surgery one, we were not sure if Max would walk. Now, after surgery two, we are not sure if Max will be able to go to the bathroom on his own.

For Maxwell to go home post spinal surgery, we have to learn how to properly empty his bladder with a catheter.

Multiple times a day.

I was a 911 dispatcher and former EMT, not a nurse; Ian is the general manager of a hockey store and not a nurse. What do we know about catheterization??  Not only about catheterizing our child, but doing it safely to prevent infection?? How are we going to manage this? How are we going to manage this AND babysitting? I can’t see straight anymore.

The next few months are pure chaos. I am working in the evenings to be available for doctor’s appointments and therapy during the day. Ian, in retail, has the worst schedule in the history of the world. Ian’s Mom watches the kids from the time I have to leave, until Ian gets home, not much longer than 4-5 hours. Before getting myself ready for work and making dinner for me to take and for Ian and Carly to have, I have to pre-thicken ALL of anything Max could drink. This means making batches of liquid before we leave the house. This means nailing the recipe, otherwise, it all gets tossed and you have to start all over again. We are buying VERY expensive formula that has nothing but minerals and protein in it, because on top of all of this chaos, Max is not pooping like a typical baby either. During this time, I am taking my “dinner” break at work, provided I’m not working by myself and it’s not too busy to drive home as quickly as possible. I run in the house, squeeze the kids who are overjoyed to see me, scrub my hands, speed cath Max, get him all set for bed and then rush out while the kids scream and cry and beg me not to go…I then, drive back to work and count down the minutes until I can leave and go home again.  

Why didn’t I quit my job to take care of Max full time? Bills for sure, but also health insurance. I cannot discount the massive benefit that we were afforded by having municipal insurance. I would cry often for the families that did not have insurance. We had no choice but to work together to coordinate Max’s schedule based on our work schedules. We were chess pieces being moved around the board by whatever pawn we were to jump over next.

This way of life was exhausting and not sustainable.

Any time Max sneezes or hiccups, we are checking his temp and vitals to see if we need to kick the breathing treatment into high gear. Fear of pneumonia means hyper vigilance with sickness and germs.

This is where the memory gets a little fuzzy. We graduate from birth to three and Max is going to transition to preschool.

Gulp.

I can’t.

No way.

Nope.