The Birth I Didn’t Experience
I was put to sleep for my C-section, so I didn’t get to see my baby being born.
When I woke up, I remember looking at him and instantly saying, “What’s wrong with him?” It was an instinctive reaction. I was reassured he was fine.
I remember coming home with him with so many unanswered questions.
The dislocated hip, the white lump on his eye, the times he stopped breathing while drinking milk,I was constantly on edge.
The Fear of the Unknown
The worry about his eye was especially hard to navigate. No one seemed to know what it was, and I had no diagnosis. I was terrified it could be something serious, what if it was cancer? What if he lost his sight? The fear consumed me, and not having clear answers made it even worse. I carried that anxiety alone, not wanting to seem like I couldn’t cope.
A Different Kind of Motherhood
We all imagine what it’s like to become a mum and what the early days will be like. But my experience as a Goldenhar mum wasn’t what I had imagined. It was consumed with worry, so much so that I struggled to feel anything else.
It was strange, like no one dared to talk about it.
I spent all of my time researching what his condition could be, frantically finding parents across the world to talk to about the surgery he needed.
I had a spreadsheet on my computer with details of surgeons, surgical techniques, and outcomes. I think this was part hope and part distraction.
The Guilt That Never Leaves
We picture the early days of motherhood as blissful newborn cuddles on the sofa. But for me, it felt like that had been taken away. Now, seven years later, I feel regretful that I didn’t cherish that time, time I will never get back.
No One Ever Asked If I Was Okay
Multiple diagnoses. Multiple surgeries. Not one healthcare professional ever asked me if I was okay. And still, to this day, I think that needs to change.
A mother with a child born with health issues should automatically be offered support.
And yet, so many of us are scared to ask for help because we don’t want to be seen as struggling. What if they think we can’t cope? What if they think we aren’t good mums?
Why I’m Offering Free Counselling
My heart goes out to the mums with children born with disabilities and health conditions who don’t have support. I was lucky, my family helped me.
This is why I’m getting involved with Goldenhar UK and offering free counselling sessions to parents and individuals with goldenhars (age 18 or over).
No mother should have to navigate this journey alone, and mothers should not have to worry about asking for support.