A few days after the twins were born and it was clear that Emily’s condition was declining, a social worker at the hospital came to talk with us. It was a short conversation, she mainly just introduced herself and gave me her card with the message, call if you need anything. Back then I wasn’t really in a space to understand, let alone talk about what had happened, what was still happening. I was very much in survival mode, keeping my thoughts to a minimum, pushing forward, believing that it would get better…. Our daughter was one of the lucky ones after all, she was alive, so how could I be disappointed or complain? So I didn’t.
I held it in. I swallowed down the emotions attached to her traumatic, nearly fatal start to life.
Weeks of leaving her in the hospital without a diagnoses. Countless blood tests and hospital stays. The shock of the news that while she would recover from some things which were making her sick, the underlying cause was a rare disease which she had to live with… forever. I couldn’t speak about it. Or when I did, I downplayed it, always turning towards the positives when telling our story - but despite it all, we have SO much to be thankful for! I didn’t want a pity party, I still don’t, I always knew it would hard for others to actually understand so it would be easier to keep my emotions to myself.
Eventually though, those painful memories, horrific images, the guilt and sadness and grief was eating me up. I didn’t like how I felt. My mind wasn’t my own, filled with a poison that took me to such a dark place. Fuelled by sleep deprivation and the ongoing added mental stress of caring for a medically fragile child. “You’re so tired because SHE is so difficult”, my mind would tell me, “If she wasn’t sick life would be SO much easier” I would hear as my body tensed up with each noise she made, anger piling up each time she woke in the night. The worry and anxiety of something going wrong with her AGAIN drove me down a dark road. At first I only told Tim and then my Mom. I didn’t feel well, something wasn’t right. And then I remembered my talk with that social worker so I dialled that number and asked for a referral to a psychologist.
I met her regularly for about a year - and I genuinely did feel a bit better. I also slept more, hired more regular help to be able to have more time for myself and Emily didn’t have a crisis for a few months. So I thought I was ‘better’. We moved to a new home in a new town and many things transitioned with our personal life and my work. It was a difficult time for us with many new elements coming into play and I started to feel it again. I ignored it and told myself that once we got settled it would get better. I had already gone to therapy so I had dealt with those issues right? The twins were already 2 and it felt like I needed to move on, it was soooo long ago, I would tell myself. So I continued on, having those negative and sometimes scary thoughts but not telling anyone. I was under a lot of stress from my job which only made the situation worse.
Then as winter approached Em got sick and we went to the ER twice in 2 weeks and had to plan emergency appointments and tests to make sure she was okay. Something snapped. Everything made me angry. I was exhausted, had zero patience and eventually felt physically ill. My vision became blurry, I got headaches and had no energy left. When the blood tests came back normal and my eyes were diagnosed as being nothing more serious than ‘chronically dry’ - my doctor said - is anything else bothering you?
I wanted to scream ‘EVERYTHING’! The reality of my life as a mother was crushing me and the realization thereof left me with unbelievable amounts of guilt. I truly hated myself in those dark moments. I had so much to be thankful for but also so much pain that was limiting how much I could actually enjoy it. My health and mood continued to decline and people around me started to notice. My co-worker, who was also a very close friend, and I were driving to a meeting one day when I told her how awful I had been feeling. She wasn’t surprised at all - she had also experienced a traumatic birth with her premie daughter and was very open about needing therapy to recover from the entire experience. She mentioned EMDR and suggested I look into it. That evening with tears in my eyes, I typed it into google. “Eye Movement Desensitization and Reprocessing therapy is used to relieve psychological stress. It is an effective treatment for trauma and PTSD”.
'Trauma? PTSD? I didn’t go to war, I just had a baby!' I thought to myself. Surely this was not meant for someone like me? People have difficult births all the time, it’s just part of life…. right? Wrong. "Somewhere around 30% of women experience birth trauma and a portion of them go on to develop a form of PTSD which is a severe and long lasting reaction to the trauma.” I looked over at Emily and burst into tears.
I googled EMDR Therapy + the name of our town and looked at a few profiles online. I called one very near to our home and left a brief voicemail. She called me back late one evening after I had put the kids in bed and we starting chatting. I rattled off my usual (emotionless) story about my start as a mother, casually mentioning that my daughter had a rare chronic illness… that was enough for her to stop me and say ‘I’m so sorry, I cannot imagine how difficult this has been for you. What a heavy circumstance to have to live with.’ (Cue the tears). I swallowed hard and felt my chest tighten. Reactions all too familiar to me when I would start to get emotional about Em.
I took a breath and let it out. The pain, the helpless feeling I had been living with (for years), the sadness of how my mental state had been impacting my relationship, the anger I had been taking out on those trying to help me. "I. Need. Help.” I said. But she knew it already and explained that she felt that I needed to be moved up on the waiting list and come as soon as possible after the Christmas Break.
I had gone to therapy before so in some sense was a bit ‘used to the drill’ and started my little usual speech about my background and how I got here (again pretty emotionless). She looked at me fairly seriously and said. “This is only going to work if you actually tell me how you’re feeling”. I had become so used to trying not to focus on the negative parts of our story, always reassuring the listener that ‘everything is fine now, she’s doing so well’ - almost by default, maybe to avoid making others uncomfortable, or to hide some of the pain I was going through despite having so much to be thankful for... in any case I usually didn’t ever actually express my true emotions about our situation anymore. Her calling me out on that was really the first step for me to start healing. Realising that I wasn’t helping anyone by hiding how Emily’s illness impacted my daily life, especially not myself. We talked for an hour, every other week, about not only Emily but all the things that had changed in my life over the course of the past 3 years. It wasn’t ‘just’ about Emily after all, and identifying the other things that were bothering me started to help me to communicate better with those closest to me about how I actually felt, actively ask them for the help and support I was missing, and try to make changes that would help me feel healthier and happier. I often felt guilty to express my ‘unhappiness’ since I lived in a very much privileged situation, I felt unworthy of any complaints I would make since so many people had it worse, so I would hide those feelings and ‘focus on the positive’. I started to learn that it’s okay to hurt even if you have a lot going for you, the negative doesn’t have to outweigh the positive but it also doesn’t have to be something you ignore or hide for whatever reason. And finally, I started to work on the most important lesson of it all, learning ways to control my intense emotions, accept our new reality and move on.
Finally, THE day came when I had to talk about it all. I was kind of dreading it because we had been having such a nice stretch without illness and a lot of time together as a family. She warned me that I would be very exhausted afterwards and she preferred to do one longer session for the EMDR process instead of breaking it up into multiple dates so we went for it. I closed my eyes and wore headphones which played a ticking sound while I started to visualize my journey as a Mom. I told the story with so much detail, thinking back to every little part which had a bigger impact on our lives and also moments that made me smile or laugh, there were so many after all.
When we got to the birth story my heart started to pound. ‘Emily needed an IV at some point... her blood sugar was too low... her IV got infected and she became very sick’ my head pounded, my eyes twitched, I scrunched my face and my body tensed as I saw her little swollen hands and feet hooked to wires, her monitor flatlining, the ambulance driving away with lights flashing to the NICU. Tears streamed down my face while I spoke, not always being able to get the words our clearly ‘Then Tim called, he never cries but he wept as he said - you have to come now, she’s dying’ my head whirled in circles, as if I was stuck in a cyclone and couldn’t get out. My eyes burned as my brain resisted these memories I didn’t want to see. 'Tick tick tick' I heard in my ears as Benina spoke to me in the background pushing me to focus and my eyes flickered again back to the moment when the doctors lifted Emily from one incubator into the ambulance transporter, bright sunlight shined through the skylight above my head and I opened my eyes. ‘I see it now. She was dying but they saved her. She’s here.’
We continued that process of returning to the most painful moments and talking them through, allowing myself to feel the pain and sadness, the anger and grief and working towards finding perspective and peace, always will the goal of working towards acceptance. As the hours went by, I felt tired but lighter, a huge weight was lifted from my heart after being able to speak about my most intimate thoughts, things I had been ashamed to talk about, viewing memories which I didn’t want to see, in another light.
All with the important realization that some of the pain will always remain within my heart because as her mother, I wish I could make it all disappear for her. It isn’t some ‘magic pill’ that will make it all go away and I will likely need a lot of support to stay mentally healthy long term, and that is okay. Like with Em’s disease, this will be a lifelong journey of learning to live with our circumstances, supporting each other and growing together as a family and making the very best life we can with the cards we have been dealt. And that life can still be pretty amazing.
Anna – Mom of Marcus & Emily – Baarn, The Netherlands
To learn more about EMDR therapy, read through the below resources. If you recently had a baby and are not feeling well, please tell someone you trust. You aren’t alone in this.
What is EMDR?
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