Confrontation
I’ve come to my maternal home to properly meet my beautiful ex-NICU nephew, an absolute joy and trooper who was born at 490g (!!!) and has progressed so well alhamdulillah (praise to Allah). Holding him, I’m confronted with these painful feelings - seeing how this tiny less-than-1st centile baby is able to enjoy the world so wonderfully, while the world passes my baby by. I’m so happy for my sister, for my nephew. I’m so hurt for my baby.
My baby has started a new medication and has lost ALL tone he has worked so hard for for the past 8 months. I know that it is likely short term regression and this journey will be relentlessly up and down, but it’s so hard seeing him so unlike himself. All he’s doing all day is groaning or sleeping. I wanted my family to see how much progress he has made since they saw him last, but we started the new med just before we went to my mums so they’ve missed out on enjoying those little gains. He’s floppier than he was when he was born.
I think it also got to my older brother this weekend, seeing a tiny glimpse of the grief that I face. How things can change overnight. It’s just bought it all home and made me pause and really FEEL the grief all over again.
