By Ava Ghasemi
It’s Summer 2017. Amelia is turning 6 months old. She is adorable sitting inside my suitcase as I pack for our little trip to see my family.
I look at her and smile as I talk to her about what I’m packing for our trip. I look at her beautiful little face and see the swelling that has been bothering me for the past few days. I noticed this a few days ago. I thought it would have gone away by now. “Did she bump her face on the cot?” I ask myself and carry on packing.
My motherhood has not been what I expected. I didn’t want to and felt I couldn't breastfeed and felt guilty about it. We weren’t sleeping in the same room and I felt guilty about it. I was working 3 days a week and I felt guilty about it. “Is this how I am going to feel for the rest of my life?”
As a psychologist and therapist, I often thought guilt would only be useful if you could actually do something about the thing you feel guilty about. How wrong I was. My “mom-guilt” didn’t care if it was there for a good reason or not. No matter how much I did it still crept in. Does being a mom mean feeling guilty whenever anything happens to your baby?
An Ambiguous Diagnosis
We have been to more than 10 appointments in the span of a few weeks including an MRI that almost didn’t happen because the anesthesiologist was mad at me for not fasting my daughter correctly. When he realized his colleague had assumed I was breastfeeding and had advised us incorrectly to fast for only 4 hours, I could sense the guilt on his face. Amelia is beside herself. A lot of tears and half a day later the doctor confirms that it's “just a cyst”.
A few weeks go by, I’m tired of worrying. I’m anxious about this bump getting bigger. Every time I see a new doctor who says “don’t worry, it’s just a cyst” I feel a little better, and a day later the anxiety creeps in again. A voice in me says “do something!”
By fall 2017, the bump is the size of a walnut. I keep reassuring everyone who lays their sympathetic eyes on Amelia: “the doctors say it’s nothing to worry about. She is ok! We are ok!” I really dislike sympathy. All I want is to hear another story by a mom whose child has the exact same thing who could explain to me what this is. Ideally, a mom who is a doctor, a ‘mom-doctor’ who specializes in bumps and swellings on faces.
After a few tests and a surgery to remove the “cyst,” I am sitting in a doctor's office in London with my mom and Amelia in my lap. For the first time in 3 months there is a doctor who finally looks concerned. My anxiety wasn’t wrong, it was telling me all along, “something is off!” He tells us “it’s a malignant tumor.”
A few days later, Mark and I are sitting in the oncologist’s office. I can tell she’s a mom. I learned she has two young sons. She has the eyes of a mom who gets it. There is also someone from the palliative team there. Mark and I just pretend we don’t see her. And there is a nurse named Emma who would become my number one support system throughout the year that followed.
“B-COR clear cell sarcoma of the soft tissue. It’s very aggressive. We don’t have enough information about it. She needs 14 rounds of chemo, possibly radiation and more surgeries.” I ask “What is the survival rate?” as I’m holding Mark’s hand so tightly it hurts. The pain is a good distraction from the hollow feeling in my heart. “We don’t know,” she says. She is honest and she’s a mom-doctor. I can trust this woman.
D comes after C. D is for Dwarfism. C is for Cancer.
It’s Early September, this time in 2019. Oliver has just been born 3 days ago. He and I are being discharged from the hospital after a relatively smooth planned cesarean. I’m thinking everything will be much easier this time around. With Amelia it was an emergency C-section and all my plans for hypnobirthing, water birth with yoga music went to shits when I started having convulsions and they rushed me to the operating theatre.
This time was different, or so I thought. I knew Ollie’s head was relatively big so the doctor advised me to go for a C-section. This time things were predictable, planned, nice and tidy the way I like it.
I think “all I want to do is go home.” The doctor looks concerned and tells me “you might want to do an ultrasound of his head and maybe also genetic testing. His limbs are short.” I don’t understand...What does this mean? The doctor says “I'm not sure, but it could be dwarfism, but I don’t think so.”
All I want is to have a “normal” experience this time around. I just want to hold my baby, and sing to him, and sleep next to him, and cuddle him, breastfeed him. I want to go home to Amelia. She needs me. I miss her. I feel my mom-guilt again.
I think “I can’t be at hospitals every day, all day again. We have just begun to recover from Amelia’s cancer journey, a pregnancy and childbirth. I can’t cope with this now!” So, I put everything the doctor says to me at discharge in a little mental box and we go home. I cuddle him, I breastfeed him, I hold Amelia tightly and breathe her in smelling her hair. I snuggle with my babies. A voice inside me says “No matter what, you will find a way to cope. Just keep breathing. Just be for now.”
As soon as Ollie goes to sleep I begin to research dwarfism, growth charts, limb length, and health concerns while thinking “how in the world am I here again!? I know too much about B-cor clear cell sarcoma. There can’t possibly be any room left in my brain for more information.” I start going down my default anxious endless irrational spiral of self blame and guilt: “I did this to him. My body must have caused his genetic mutation. Did I watch too many back to back episodes of Game of Thrones!? Did I work too hard? Did I eat badly? I definitely had salami and sushi. I must have caused my perfect little fetus stress.”