The following piece is taken from a post I shared on Instagram when I really felt at my lowest after the high of bringing Evie home from hospital. I posted this on Feb 8th, 3 weeks after Evie’s discharge. We had settled into our new routine with Evie’s extra needs but the reality of having a very sick baby had hit me hard. Things are different now, much better, but I think it’s important to recognise the feelings I experienced during this time.
“It’s my job and she’s my baby, but it’s hard. Not having Evie would be harder”
Every feeling is conflicted. Lucky to have her, unlucky we have all these extra machines and tubes and meds. Grateful for everything that keeps her alive but resent it all for being in my home. When we change her to her CPAP mask at night sometimes she cries so much it makes me feel so sick I feel I’ll throw up. Sometimes she welcomes it and falls asleep instantly and so my own body relaxes with her.
Content being home with my beautiful family but miss popping out to the shops or the beach without a second thought. Lonely but riddled with perceived social anxiety that probably isn’t there asides from the very real fear of picking anything up that could make Evie sick again. Hate the nurses coming to look after my baby, but welcome them with tired, open arms. I don’t rest well without Evie beside me but I’m exhausted from looking after her. Amazed at her development but massively guilty for not providing her with more time and stimulation.
Hate that we don’t have the freedom to just go anywhere, even popping upstairs to Evie’s room with her to pick out an outfit. Tubes that keep her alive limit our movement. Our schedule is so medicalised, it makes it hard to factor in fun, different foods for Evie, fresh air, or to enjoy anything for myself. Everything is timed and meticulously thought out. It’s my job and she’s my baby, but it’s hard. Not having Evie would be harder. The future is unknown and that is terrifying and although I try to live in the present, succeeding most of the time, fleeting visions of a life without Evie appear again and again.
We aren’t lucky enough to have this as temporary while we wait for life changing surgery. We are lucky enough to still have our little bird however. That doesn’t always keep the negative feelings at bay. Every red mark or damaged piece of skin I see on her face, every whimper or full blown cry from readjusting her oxygen/tape/mask/tube reminds me of how hard this is. Every pant or puke or purple tinge reminds me.
I know I am cut out for this. I know I will never stop fighting for Evie and always keep her comfort and quality of life as my main priority. I’ll never stop advocating and shouting her worth. But I know I’m tired and I know this is hard.