A Therapist's Journey of Motherhood, Cancer and Dwarfism

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.

It’s Malignant

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.”

Therapy

I booked myself a session with my therapist who had helped me during my pregnancy with Ollie. When I was pregnant with Ollie I was having nightmares and anxiety about Amelia’s health. I did EMDR (Eye movement desensitization and reprocessing) therapy- a treatment developed in the 90s by Francine Shapiro at Columbia University. EMDR helped me reprocess the experiences of our cancer journey and memories that were blocked out and frozen in time causing me to have these nightmares.

With EMDR, I reprocessed all those horrific days during Amelia’s cancer treatment when I felt helpless, when I thought she was going to die, when I was depressed and could barely get out of bed. I knew I needed to heal myself. I didn’t want to pass on my anxiety to my children. Mark coped differently. He is a runner. But even he went ahead with EMDR.

I sent an email to Mette, Amelia’s oncologist, my now mom-doctor friend in London. I also emailed Emma who comforted me and told me all I needed was to just enjoy being a new mom and bond with my baby, especially since Ollie doesn’t have any immediate symptoms that need attention and he is a happy little baby. They reassured me and this time my anxiety went away and mostly stayed away. This time around I didn’t have the voice in me saying “do something!” I felt differently compared to cancer and this time around I was feeling grateful. This is not life threatening.

When Ollie turned 18 months we decided to do genetic testing. The diagnosis was confirmed: It’s a type of dwarfism called hypochondroplasia. What does it mean? I asked and the doctors explained. We learned that some children will have difficulties, some won’t. Mostly children with dwarfism grow into adults who go on to have perfectly normal lives. One doctor said “All kids with dwarfism are happy. It must be in their genes.” I know he meant well but I’m not sure whether what he said was comforting or disturbingly discriminatory. How can all kids with dwarfism be happy!? I’m going to need more therapy.

Mom-(Psychology) Doctor

Amelia is now 3 years cancer-free. She has a visible scar on her face due to her surgeries and radiation. She is smart, funny and beautiful. She started spending slightly longer looking at herself in the mirror and studying her scar. I began to grow concerned about her emotional health. I just want her to know how incredibly wonderfully special and beautiful she is.

Once we were all in our community pool. There were two younger men who were in the pool next to us talking to each other. They looked over at Amelia. She looked back. They stared a bit longer than they should have. Then Amelia covered her eyes, started crying and told my husband “daddy tell them to stop looking at me.” I didn’t know if I wanted to cry or punch those guys. I composed myself, cuddled her and said, “you can just wave at them and say hi.” It was too late.

After that incident I booked in a session with my therapist for myself and a separate session with a child therapist for Amelia. I don’t think I would have had the mental capacity to deal with Amelia’s emotional process toward her facial difference or Ollie’s dwarfism diagnosis, if I hadn’t done EMDR. It really was a journey that prepared me in many ways to remember that no matter what happens I can cope. And if I think I can’t cope, I will still find a way to cope.

I now am an EMDR trained therapist myself and I work with people with all kinds of traumas. Women who have lost their babies. Women who have had traumatic births. Women with children with special needs.

It has been 4 years since I noticed that bump on Amelia’s face and 2 years since Ollie’s birth and there are a few things I learned that keep me going:

1. Support: A child’s medical diagnosis no matter how rare or common can be very traumatic. Thank goodness, thanks universe, I have so much support. Family, friends, nanny, school, Amelia's medical team, Oliver’s medical team, my therapist, Amelia’s therapist, and Mark’s therapist. Yes, even Amelia did EMDR. I am just grateful to have access to health care and so aware that this is not something I can take for granted EVER.

1. Helping others in their healing journey: I don't think healing is a one time event. It’s a lifelong journey of self discovery and leaning into the uncertainties of life. Being with my own feelings, healing my own wounds, and being with my clients through their healing, is what reminds me that we’re not alone. No matter how rare we think our situation is, there are many others going through exactly what we’re going through right now. Connection is healing. Besides therapy I co-author an emotional health blog called Aurelia Psychology to guide people in their emotional health journeys in areas of self, love, parenting, and work. Writing can be incredibly therapeutic.

1. Keeping routines and breaking rules: I have finally found some affordable yoga and pilates classes that I can attend daily first thing in the morning before work. The classes help me feel stronger in my body. I have a disciplined routine that is working for me (for now). I see my clients at my office or online. I write. I read and study cases. I exercise. I spend time with my family in the evening and on weekends. I go to bed at 9PM and I’m up by 5AM most days.

But every once in a while I just let myself break the routines of my life a bit and do something spontaneous. Routine is great for kids but too much of it is just rigid in my opinion. Spontaneity is good but too much of it is chaotic and anxiety provoking. As a family we have to keep seeking that sweet spot of balance between order and spontaneity to feel calm and alive.

Being a ‘good’ mother to my perfect babies isn’t about having all the answers, getting it right all the time, or even knowing how to deal with stress all the time.

Whenever in doubt, I often just go back to the basics. Whenever those voices of anxiety, guilt, self-blame, self-criticism, fear, tearfulness or irritability come up, I comfort myself like I comfort my children. I love myself the way I love my children. I talk to myself the way I talk to my children.

When I become stressed, I pause and go inside of myself instead of fixing the external situation. I first connect with the parts and the voices inside of me that are there. I make space for all there is inside of me. And my number one priority in life besides shelter, food and safety is love. It is the one constant. Love is healing. Love is calming.

Whenever my mom-guilt shows up, I say “I see you, I’m here for you, I love you.” Whenever my anxious spiral of obsession comes up, I breathe and make space, and I give it gratitude for everything it is trying to do for me. I keep practicing to love all parts of me.

Self-compassion and self-love don’t necessarily make me a “better” mother, but they help me sustain myself and prevent burn out so I can keep doing whatever it is that I am trying to do as a mother, as a therapist and as a human being in my lifetime.

With love to all other extra lucky moms,

Ava

Dr Ava Ghasemi is a Psychologist and runs the online platform Aurelia Psychology. You can find her on Instagram @dr.ava.psychologygeek and @aureliapsychology.