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 is my second week of work. Last week was challenging to say the least. Being at work itself actually wasn't so bad. A routine, an attempt at normalcy in a way took my mind of the pain. Being busy, acting 'normal' made me focus on things less, it gave me challenges to overcome, to obsess just a little less. The pain is obviously still there just like before, I carry it with me as I always will. Going back made me feel empowered, just like when I went to the park and met my friend and her new baby. Why should I let it take more from me? I refuse to let it take from me! It's taken enough! I have nothing else left to lose! What was horrible about work is having to tell people. My collegues all knew, and have been very sweet and sensitive to me. They don't ask or pry. Only if I talk they are willing to listen which I think is the most important. Of course they dont understand, no one understands. You have to be in this situation only then you could undertant. Last week, I had to break the news to about 15 people. All greeting me with an excited, 'welcome back, hows the baby'. I don't blame them, that's what I would have asked too, babies are not supposed to die! they are born and then they go on to have normal and happy lives! everyones happy. Up until Wednesday, I cried everytime I had to explain. Tears welled up in my eyes and I simply couldn't get the words out. They also cried. It was a mess, it was horrible. They didn't know what to say, they hugged me, were shocked. Some asked questions, some hurried along embarrassed not knowing what to say. Some shared similar stories of infant loss in their families. By Thursday I was a little more used to it, I learned what to say. 'Thank you for asking. It is very hard to talk about it, but sadly she didn't make it, I had her for 19 wonderful days. She is now an angel, who will forever be with me'.