The room was cold, sterile, and oh so quiet. I swear I could hear the doctor’s thoughts churning in his head. I could tell something wasn’t right, after all I was in an in depth sonogram that was lasting over an hour. All of a sudden he left the room quickly telling me I could get dressed. I’m not sure how long my mother and I waited for him to come back in, my memories always seem to distort minutes from hours and visa versa. But when he did appear his face said it all, his face told me what his words wanted to say…something definitely wasn’t right. ‘Your baby’s head hasn’t grown because her brain has stopped developing. We’re sending you downstairs for a fetal MRI to get a better look. We’ll go from there.’
That’s it? No more information? What do you mean it stopped developing? What does that mean for her? Of course my own brain couldn’t form any questions at that moment. I just looked at him as the walls were slowly closing in around me. The only word my mouth could mutter, ‘ok’. But as soon as he shut the door behind him after excusing himself my tears flowed freely. I was scared, lost, fearful, my mind raced.
As my mother and I headed downstairs to the MRI I stared at the MRI order in my hand. Dazed. Handwritten on the bottom said ‘Microcephaly with sloping forehead’. I cried a little harder.
My next appointment was to go over the MRI results. I can’t even remember the whole conversation. I remember it only confirmed what he had told me previously and that he had set up an appointment to go meet with the NICU main doctor directly following my appointment because ‘IF your baby survives birth she will need to go directly to the NICU’.
I was terrified hitting the buzzer to get into the NICU unit. ‘Ummm….my name is Megan. I was told I am to meet with the NICU doctor now.’ I heard the door click open. I pushed through it to discover a very sterile, surreal world. My mother and I were immediately lead to the center small room of three adjoining ones. There were three chairs and an empty bassinet. We all sat. And I half listened, in a daze. All I truly remember is being told my baby’s survival was questionable. That she had been referred to as a ‘baby with a smooth brain’, but no technical term. That the doctor calmly explained that the reason the babies in the connecting room were screaming, screaming like they were in the worst pain, was because it was time for their methadone dose as they were born addicted. The most memorable part of the visit was that I left pissed, seriously mad. My first fully identifiable emotion since first learning everything. I was pissed for the babies screaming, pissed for my unborn child, pissed for myself. These innocent children were brought into this world by selfish women who chose drugs over their health. They were left alone in this room addicted to heroine. They didn’t ask for that; how dare those mothers. And here I sat, a mother who fully embraced my pregnancy, changed my entire life in one day without hesitation, and followed every book and article I read, and yet, here I sat in a small NICU room being told of my child’s horrible and probable prognosis. My brain couldn’t wrap itself around what I felt was clear injustice.
As the next 2 weeks flew by I was caught between researching and preparing for what was to come and this naive hope that they were all wrong and everything would be fine. It wasn’t hard to find the technical term of Lissencephaly when googling ‘smooth brain’, but it was hard to find solid information besides a paragraph or two, positive cases/perspective, or much support. I felt alone, isolated, desperate for someone who knew my inner most fears. This ‘rare’ world I was being thrown into was so intimidating, hard to navigate, so daunting.
All the fears I had somehow transferred into hope the second my daughter was born. Any doubt instantly faded. Even on her second day of life when the doctor announced to me and my room full of visitors of the confirmation of my daughter’s rare brain malformation and all the things she’ll never do. I simply said ‘ok’ because I had hope and belief that she would write her own story. They often speak of ‘fight or flight’ when you’re in a hard spot, but what I thought at the time was the hardest situation only left me with a full, loving heart ready to fight – and fight I would.
Nothing that you read tells you that a rare diagnosis for your child leads to a different kind of fight. Nothing that you read will they you that every time you get a new doctor or specialist, each ER visit, or therapist visit will require you to teach the professionals about your child’s rare diagnosis, their life, what it entails, and how they’re much more than what a textbook will say about them. No google search will tell you how life ‘really is’, the positive stories, the inspiring kids living with the same or similar rare diagnosis around the globe. No book or professional can truly explain what every day life, the normal ins and outs, is like with a complex child with a rare diagnosis unless it’s written by a caregiver. No one says that you’ll beg doctors to give you an ‘umbrella diagnosis’ in hopes that insurance will finally approve your child’s needed equipment because their rare diagnosis doesn’t have a ‘code’ yet or insurance doesn’t understand the diagnosis at all so they deny everything until you’ve appealed it ten times with ten different letters of medical necessity. None of this is written in the books. Majority of books don’t even touch on what to do if your child isn’t typical.
During her first 6 months of life I fumbled through this ‘rare’ world. I found out just how much fight I had in me with daily calls to insurance or doctors, juggling weekly therapies and doctor appointments, ER trips, hospitalizations including one for 5.5 weeks, two surgeries, and so much frustration as I began to drown in debt due to co-pays, travel costs, and out of pocket costs on so much of her medical supplies. I watched my daughter fight daily, always with a smile on her face, and I knew I owed her everything in the world so I fought even harder. I also knew right then that our system was flawed.
At almost 2.5 years of life my daughter went to her permanent home in heaven, but I knew she still needed me to fight. So I do, to this day, I fight for children like her. The rare, the undiagnosed, the complex, the forgotten. I fight for families like mine, by advocating, reinforcing, providing resources, sharing our stories. I knew that my world was never the same after Parker was born and it was even more changed after losing her. I had to take what she taught me and then turn my pain and darkness into love and light. For four years her smiling face has motivated me and turned The Parker Lee Project into what it is. The love, energy, and time I dedicated to Parker her entire life is now dedicated to helping children in our broken system. My days are full with heartbreaking and rewarding stories as I provide families with the medical supplies and equipment they desperately need at no cost to them. I still fight so hard so hopefully other parents and caregivers can focus their efforts, time, and money to another area in need while knowing their child has the life-saving and life-sustaining items they need and deserve because of The Parker Lee Project.
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