When Life Isn’t What You Thought it Would Be

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To read my blog recently you might think, “what an upbeat mum,” “she’s so accepting of her daughter’s disabilities,” “she’s handled all this so well.” I want to tell you, this is not the case.

I want to come clean. I wasn’t always this positive. I did not always feel so upbeat. For almost four months I did little besides cry.

I want you to know this because when I was going through it I didn’t want people to tell me all the positives about having a special needs child. I didn’t want to hear about the amazing community; the friends I would make that I never would have met otherwise; the joy and wonder I would feel seeing my daughter achieve things other children had accomplished months and years before. I wanted people to acknowledge the pain I was feeling and to say, “Yeah, that is bloody hard”. I didn’t want to hear that everything happens for a reason, or that God only gives you what you can handle, or even, that your daughter is not her diagnosis. I wanted to rewind time and make it all different. I wanted to remove my daughter’s disabilities and start a new. I didn’t want a different daughter, I wanted my daughter to have the massive challenges placed in front of her removed.

I want you to know this because I don’t want anyone who is going through something similar to think you need to feel positive and cheery and uplifted from the get go. I want you to know it’s ok to grieve the child you were expecting. It’s ok to feel like the ground has swallowed you up. But I also want you to know that four months after the ground swallowed me up, it spat me back out again. In a different spot. I can’t go back to where I was before, but in a lot of ways, I don’t want to.

My daughter, Eva, was born six and a half months ago. While I was pregnant I had a number of scans because doctors were worried about a small list of abnormalities and discrepancies in her scans. I had an amniocentesis which came up clear, but at 24 weeks they saw her left eye was smaller than the right and she had what looked like an atrial septal defect, a hole in her heart. Over the course of the pregnancy they ruled out all abnormalities except for her eye. I prepared myself for meeting Eva and dealing with what her eye issues would be. I knew she would need a prosthesis and that it could be a difficult process to fit conformers. We would have a relationship with her ophthalmologist that would last years. I remember the drive home from the appointment with the doctor where I learnt about the regular operations she would need to fit conformers and get her ready for a prosthetic eye. I wept over the steering wheel, thinking about how my daughter would suffer and how outside the normal her experience was going to be.

Had I known what was waiting a few short months later, I think I would have run screaming.

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When Eva was born we saw straight away that her left eye had a cyst-like formation, instead of an eye. We were told that, in fact, this might be a good thing, as it would be keeping the shape and size of her orbit symmetrical to the other eye. Nature would play the role a conformer normally would.

Aside from her eye, Eva looked normal to me. The paediatrician mentioned a number of small anomalies the night of her birth – low set ears, hyper flexible limbs, a short neck – which to a layman, as I was then, meant nothing, but now I see they were the beginnings of clues to her diagnosis.

I got two days to enjoy my little girl and start to fall in love before a paediatrician brought the hospital walls crashing down around me. He stopped by Eva’s plastic crib and without talking to me, told his junior doctors that Eva would be most likely blind, with limited scope for development. She might have some motor skills, he granted, but probably not much else. He informed the other doctors that her muscle tone was low. She was “floppy”.

I felt my heart rate accelerate as I looked at one doctor after another. They avoided my gaze. No one had mentioned blindness, let alone any other issues. Almost instantly I felt the power of denial take over. I said to anyone who would listen, “she’s got such a good grip, she’s not floppy,” and “it’s her left eye that’s a problem. Her right eye is fine.”

“He doesn’t know what he is talking about,” became my mantra.

While his mode of delivery might have been less than ideal, this initial paediatrician’s diagnosis was very close to where we ended up weeks later, after numerous tests.

Eva spent six weeks in the special care baby unit and the NICU. She had two MRIs, multiple ultrasounds, x-rays, blood tests, and an echo cardiogram. At the end of all this testing I found out Eva is blind and deaf. She has micropthalmia in both eyes meaning her eyes are smaller than normal, and her left eye is almost nonexistent. Her right eye also has extensive coloboma, which is what gives her pupil its cats-eye look. She has a missing corpus callosum in her brain as well as wider than normal sylvan fissures. Her first MRI also revealed a smoother than normal frontal lobe. She has a hole in her heart and a right sided aortic arch. In addition to this, she was having trouble feeding and she is fed almost exclusively through a via nasal gastric tube.

Those first few weeks felt like a waking nightmare. When I remember that time I see the memories in a haze of cloud. It was always raining. I kept saying phrases like, “it’s not fair” over and over, as if this would have any affect on the reality I was living.

I was removed from the real world. Living in limbo in and out of the hospital. I remember going to the petrol station to refill my car at one stage and looking around the store at the people going about their lives. I wanted to yell at them, “you have no idea what’s going on, do you?”

Eva would eventually be given the working diagnosis of CHARGE Syndrome. While there was a lot the doctors could tell me medically, there was more that they couldn’t. They couldn’t tell me if Eva would walk, talk, crawl or even sit up. They thought she was unlikely to be a quadriplegic in a wheel chair, but anything less than that extremity was possible. I got very sick of hearing the phrase, “no one has a crystal ball” from doctors and nurses trying to placate me. The reality is we still don’t know what her future holds.

I’m delivering the news to you in one hit, but at the time it trickled in. First I learnt she would be blind. I cried over this but quickly accepted that truth. Raising a blind child would present some challenges, but I could do it.

Then I learned about her brain abnormalities. I pictured trying to teach a blind child to read Braille when their brain didn’t work like my brain, or yours. I felt overwhelmed and so sad, but I still thought I could do it. I hung to the knowledge that there are people walking around everyday who have a missing corpus callosum and no one would ever know.

Then she had her newborn deaf screening. I sat and watched as the line failed to reach the threshold. I felt tears falling down my face and slumped as a surge of numbness washed through me. She was deaf as well. I pictured Eva crawling across a pitch black room with no sight or sound. A locked box.

I had hit my wall. I could not do this. I had bargained in my head and assured myself I could handle blind. I told myself I could even handle blind with the potential for developmental issues. But a voice inside me was screaming that I could not handle blind and deaf with development issues.

I had reached my tipping point and in some ways it felt good. I had set up this line before I found out, and now that I had I felt like I could do what came next knowing it was the right decision. I talked to the social worker and began the process of finding her an adoption placement. It felt like the only way.

When I look back on my notes and appointment times from this time I realise I met with the adoption agent when Eva was just six days old. Six days old. Not even a week in this world.

He talked me through the process and sent a call out nationwide to establish interest. There were three families, across the whole of New Zealand who responded. They were scattered across the country and I thought about the benefits of each location in terms of the hospital and resources.

During this time I continued to express, and spent every day with Eva. If I was going to do this I wanted to ensure I had done my best by her. I wanted to continue to advocate for her and be the best mother I could until I wasn’t anymore.


Story written by: Tessa Prebble

This story appeared first on Real Imprints.