What does it feel like to discover your baby has a disability and a terminal diagnosis? It has taken me 3 years to write and I share it now because I want you to know it is ok to feel all these feelings.
While we waited for an official result, I would bargain with god/the universe/ whatever all being power might be listening. ‘I will give you my right arm, or my left foot. Fuck it take all my limbs, just save her’.
I day-dreamed that they were wrong. It would be a miracle, a hospital mix-up.
Diagnosis day: ‘Lily has Miller Dieker Syndrome, she will never walk or talk. She will have seizures and severe delays. We can’t tell you how long she will live. It could be 2 years or ten.’
How to describe the pain?
Think about a knife plunging in and out of your heart. On repeat. Now multiply that pain by a bazillion. Ok, you are getting a little bit closer - but still way off our reality.
I didn’t want anyone to know. The thought of their pity. Pity felt shameful, pity felt guilty.
I had funny feeling - that I knew it would always happen. Deep down, was this my destiny?
But I did not want it. Not this life, not for Lily, not for me. The life of a special needs mum. A mum who won’t see her daughter walk, socialize, who won’t ever have grandchildren. The promise of a future, all gone. It was a grieving.
Maybe it sounds selfish, I wanted so much for my child.
I didn’t know how the other special needs families did it. I do know they are the true heroes walking amongst us.
That knife plunging in and out. A lifetime of it.
So what did I do? I shut down social media. Except for a handful, I stopped seeing people with babies. Every single one of them with their healthy children, complaining about the lack of sleep. I hated them. I hated their healthy, happy, lives.
I wasn’t brave.
That is the truth. It hurt every single day. We made our world small and we lived in the moment, in our bubble of tiny joys, little laughs and massive love.
#disabilityawareness #millerdiekersyndrome #epilepsy #infantilespasms #pediatrics #projectfaceless ...