I just lost my beautiful baby girl. She was only 19 days old. When she died, I lost my hopes, dreams, future as well as part of myself.
Ater she died, I learned it was because of a rare genetic disorder called Incontinentia Pigmenti, which she inherited from me. I never knew I had it as I have no symptoms. With IP the chances of having a healthy child are only 50%.
This is my life without my baby. My struggle to face every day as I long for my daughter and hope for a healthy child.
Today was a hard day for me. Everywhere I looked I kept seeing mothers with babies. Mothers so carefree, so naive, not knowing and not apprechiating just how damn lucky they are. I just wanted to scream at them! Why did they get to keep their babies, why not me? I would be such a better mum, it is so unfair. One mother was shopping in the showroom, her 3 month old baby was being carried and looked after by a nanny, she didn't even glance at her baby for a whole 30 minutes, while I sat there tortouring myself, I couldnt take my eyes off her baby....my Amelie would also have been the same age, I would NEVER have given my tiny bundle of joy to someone else to hold, let alone take my eyes off her, ignore her, I would have been the one carrying her proudly not her nanny, it broke my heart. When I couldnt take it anymore, with tears streaming down my face I ran to the bathrooms. There of course was another angry mum shouting at her 2 year old son for misbehaving, she shouted in such a voice that even scared me. I am so sad for these babies, for being born to such mothers, I am in a way sad for these mothers too, how empty they are they will never know how lucky they are, they will never love their babies how I would have/and love mine. But most of all I am sad for us and other parents like us - we would have been such wonderful parents; patient, loving and kind. Why didn't WE get to keep our babies?