Science has never really been my thing. I was that college student who went to her advisor and asked which major has the lowest science course requirements, and then I struggled to pass that one course. When I finally got the report with that glowing C+, I thought “phew! No more science.” I was a writer, when would I ever need to know the functions of all the different body systems or the laws of physics?
Enter: Asher, my little guy who gave me a run for my money. From the day during my pregnancy when my ultrasound tech noticed something was wrong, I knew I was out of my league. Not only was this my first pregnancy and I didn’t really know what to expect anyways, I was not at all prepared to be hurdled into the world of the medically complex where it seemed everyone was speaking a different language than me.
On top of being scientifically illiterate, I had been blessed in my 24 years of life to not intimately know anyone who suffered from serious health scares. I come from a big family and we had your everyday, run of the mill illnesses. I had people close to me diagnosed with cancer and a few die from their health complications, but nothing inside my immediate family or so close that I would have any idea what to expect from that day forward.
The world I lived in, the one I knew, was gone now and I would spend the rest of Asher’s life playing catch up.
The situation was only complicated further by my status as a young, single mom. There were days that I felt like I had all the odds stacked against me when it came to advocating for my son. It was so easy to be written off by doctors and not being taken seriously by other medical professionals. I was young, emotional, uneducated and more than often hysterical. At the beginning, I didn’t really exude confidence and I questioned every single thing I did.
During one of my hysterical spells, I had consented to a surgery and then had second thoughts. The surgery had been moved up unexpectedly and when the nurse came to prep him, I lost it. I asked to talk to the doctor and withdrew consent. I needed more time to think things through. As I cried and apologized profusely to the surgical resident who came to my room to talk things through with me. After my 27th apology for acting crazy, she stopped me and said a sentence that would stick me throughout all of Asher’s care and give me the strength and confidence I needed to advocate for my child in a world I was not cut out for. She said “Stop apologizing. You’re mom. You know best.”
I might not know all the science behind what was happening to my son. I might have been a first time mom that was still trying to figure out how to change a diaper let alone administer meds through a g-tube. I was single and still hysterical most days, but I was mom. The doctors and nurses might know him just as much as I do because at that point we had spent the entirety of his life in the hospital, but I carried him. I birthed him. I knew his heartbeat and the cadence of his breathing like the back of my hand. I could trace the patterns in his handprint with my eyes closed. He was mine and I knew best.
If you are just beginning this infantile spasms journey. If you have a medically complex child in any way shape or form and you feel like you are in over your head. If you are simply a parent who isn’t sure you are doing all you can for your child, repeat with me: I am mom [dad] and I know best. Write it out. Post it to your mirror or on the dashboard of your car. Tell your partner or friend or your own mom to remind you when you are struggling. You are mom. You know best.
The second best thing I ever was told throughout my journey was to lean on others who have walked a similar path. No matter how isolating having a sick child can feel, you are not alone. After Asher’s initial diagnoses I scoured the internet for parents like me. They taught me how to advocate for my son. They were there to reassure me when I had doubts. They kept me strong when I felt lost. I gathered every single piece of information I could from them and I used it to tirelessly fight for my son, to advocate for him every single moment.
- Don’t ever be afraid to ask a doctor, nurse, specialist, etc. to repeat something in simpler terms. It doesn’t make you look stupid, it helps you make an informed decision about your child using language that people who didn’t go to 10+ years of schooling understand.
- Similarly, if you are second guessing something – ask for a second opinion. If you have a good doctor, they won’t mind. If they do mind, they shouldn’t be your doctor. Your child’s feelings and safety are number one – not the care provider’s feelings.
- Do your research. Talk to other families. Look into different medications, treatments, surgeries, etc. I know the task can feel daunting, especially if you are new to IS or you don’t speak science like me, but lean on the people who have walked this path before you. Reach out to other parents to ask how their child reacted to something. Every child is different and reacts differently, but the more information you gather, the more empowered you will feel to speak up and ask your doctor to consider x, y or z.
- Breathe and take your time. In the beginning stages of IS, it is overwhelming because you hear all the time how important it is to start treatment ASAP. I felt so much pressure in the hours following diagnosis to quickly decide what I wanted to do. I constantly had personnel in my room asking for my decision. There is nothing wrong with telling your doctor you need an hour of quiet to make a decision and then you will let them know. Do not let people bully you into hurrying your choices along. Also breathe, just breathe. These decisions are weighted and scary, but you are mom [dad], you know best.
- When it all becomes too much, ask for a break. Hold your little person. Kiss their fingers or toes. Pray to your higher power if you have one. Take 10 deep breaths. Scream into a pillow. Do what you need to do to decompress. Break down for a moment and then take a breath, shake it off, and suit up for battle with your warrior again. You got this. I promise.
I know how scary advocating for your child in a world you don’t understand can be, but over time, you will gain the confidence and knowledge you need. You will learn things you never dreamed of knowing and you will get to the point where you can care for your child’s medical needs almost as well as their doctors and nurses can.
Don’t be afraid to speak up, lean on others and remember, ultimately, you are mom [dad] and you know best.