The Blame Game
I recently participated in an online gathering and discussion specifically for parents of children with special needs. At the beginning of the conversation, the facilitator invited us to share the last negative thing we said to ourselves, an exercise to acknowledge a form of self talk that was worth changing! I watched the chat window fill up with phrases like “you’re too negative”, “you’re not doing enough”, “you’re so angry”, and “I’m the reason my child has special needs.” The last one stayed with me because it’s a story that was true to me for a long time and whether it is true or untrue in the long run, it will always exist in the back of my mind.
After Holt’s first brain surgery which marked the longest day I ever lived, I went on to experience the longest month I ever lived. The morning after waking up from surgery number one, Holt had a pocket of fluid directly under his incision at the base of his skull. His surgeon reassured us that this was normal and that pressure was a potential solution to keep the fluid flowing downward and encourage the skin to reattach to whatever it needed to reattach to. We wrapped his head in dressing and a stretchy cap, I think it was made out of a hospital stocking for feet and legs, and hoped for the best. After a few days in the hospital we were sent home, fluid bubble and all, with plenty of follow up and specialist appointments in the near future to keep close eyes on our Holty.
The following 4 weeks involved a lot of office visits, phone calls, and eventually daily picture messages to our pediatrician as my gut continued to tell me that Holt’s incision was not normal. Despite the fact that I had only just begun my studies of brain surgery incisions, I was a full year in and the number one expert on the subject of Holt and all systems firing within my gut told me that things were not OK. On 1/3/2017, exactly one month following our first surgery, we sat in the office of Holt’s neurosurgeon as he told us to meet him at the main hospital to prep for another surgery, what would be a complete revision of the first surgery, that day. Not only had Holt’s shunt malfunctioned, but surgery and testing would reveal a brain infection.
We spent the next 8 hours and 2 weeks following in the hospital – surgery, followed by 24 hours a day, 7 days a week of IV antibiotics to fight the infection. I remember crawling into the crib with Holt following that second surgery and only getting out for the bare necessities for the two weeks that followed. Every few days his IV would blow his tiny veins and they’d have to find another vein to administer the antibiotics. If you’ve never assisted in restraining your 4 month old for multiple attempts at placing an IV, the only way I can describe it is to imagine seeing someone or something you love more than anything in the entire world screaming out fully convinced they are in danger and not being able to help despite every bone in your body telling you to cut and run, but instead you resist, restrain, and you stay, over and over again.
I never feared that Holt wouldn’t get better. I truly believed that the infection would go away and that we would go home and start to live our life with our son. From this belief, I became laser focused on what I could do to never come back to the situation I was living – no more infections, no more blown veins, no more fluid draws from Holt’s shunt in the wee hours of the morning while I cradled his head and his blood dripped down my hands and arms.
At the suggestion of a family member, I scheduled a phone appointment with a homeopathic practitioner. Homeopathic care was not something that was foreign to me, “natural wellness” in general was something that I had sought in the years leading up to having Holt, particularly after experiencing difficulty in getting pregnant in the first place. A phone consultation felt appropriate because I was living at the hospital at the time, spending any spare moment I had to walk down the street to the yoga studio that I had just opened one year prior.
I sat in the chair of the hospital room and hooked myself up to my breast pump in preparation to leave for an hour or two to teach a class at the studio. Steve and my mom would be arriving soon to takeover at the hospital and Holt was resting in bed. As I pumped I talked to the homeopathic care provider. She was somewhat up to speed on my current situation already, but I filled her in on Holt’s surgeries and the infection. I was seeking ways to care for Holt once we were released from the hospital and back on our own again, certain that there was a way I could prevent a shunt malfunction and second infection.
She asked me to tell her about Holt’s coming to be – leading up to getting pregnant, my prenatal care, and his birth. When I shared with her that I got a flu shot when I was in my first trimester with Holt, she stopped me and zeroed in on the vaccine. “How’d they convince you to do that?”, a specific question she asked. I felt my heartbreaking. I responded, “I actually don’t usually get a flu shot but was told it was safe and getting the flu early in pregnancy could be harmful to the baby.” She encouraged me to look into “brains on fire” – a “study” or “resource” on the effects of the flu shot and brain development. She strongly encouraged me to stop any vaccinations for Holt and shared some remedies to assist in treating his incision once released from the hospital.
I hung up the phone. My mom and Steve were in the room. I removed the pump and closed the caps to the bottle. I felt drunk. Wasted. My head was spinning. I told them what she shared about the flu shot, gathered my things, and walked out of the hospital. I don’t remember the trip from the room to the street but my next memory is standing on the sidewalk on the other side of the valet lane at the main hospital entrance. I looked to my right and saw a bus approaching. I knew that if I stepped out in front of the bus that the impact would hurt less than how I felt inside. I crossed the street.
A week or so later I received that remedies from the homeopathic practitioner. A spray for Holt’s incision. I used it. I googled “brains on fire” one time, clicked on about two links, saw nothing of importance to me and never looked again. The next time our pediatrician told us it was time for Holt’s flu vaccination, I paused before I consented and she called me on it. She had one foot out the door and stepped back in, closing the door behind her. “I saw a hesitation regarding the flu vaccine, what’s going on?” I told her the advice I had gotten, she politely and kindly shared her own experience and knowledge. Holt got a flu vaccine that day.
One of the best things I ever did was get professional help from a counselor. For me, specifically a grief and trauma counselor that helped me process the parental rug being yanked out from under my feet. A rug that I had subconsciously knit far longer than I knew. A rug that I lost and was grieving despite the fact that a new, beautiful, better than I could have imagined rug had been put in its place.
At some point in late 2016 and early 2017, I looked at my oldest sister Marie and said “I’m not prepared for this.” She looked back and me and said, “really, because I feel like you’ve been preparing your whole life for this.” She was, and still is, right. I believe that the wellness practices derived from the Eastern hemisphere allowed me to get pregnant in the first place and that Western medicine allowed my son to be alive and thriving as he is today. I believe that I was divinely guided to learn and appreciate both. Most importantly, I’ve learned that life is constantly inviting us to wake up, sometimes it’s by a gentle nudge and sometimes by a gut punch. My past experiences are reminders of how I want to show up and who I want to be in the moment that life wakes me up, in whatever way it chooses.
