Guilt

Some time ago, I found an online support group for parents of Trisomy children. I didn't read much there at first, and actually it wasn't until late last week that I decided to poke my head in after a few months of not visiting. I skimmed the topics, and realized that the majority of the people posting were parents with LIVING trisomy 18 children. It cut like a knife, but I couldn't stop reading. Reading about the surgeries and procedures that these children have had to be able to live. Seeing pictures of beautiful wide-eyed trisomy children smiling and THRIVING.... I cannot even begin to explain the emptiness that has consumed me since then. Every day I have been lost in thought and overwhelmed that perhaps we did make a very, very bad decision to not treat Freja's medical issues and give her a chance to live.

I have felt such anger over the last several days towards the geneticist and doctors who told us that there was basically a 0% chance of Freja surviving because her condition was "incompatable with life." Did they mislead us? Did they maybe just not know enough about this condition, and that with persuing corrective surgeries etc, that these kids can live fulfilling lives?

And then there's the anger I feel towards myself. If I had known about her condition early on in the pregnancy, maybe I could've done more research of my own and had better plans in place. I was in such a huge state of shock during those 15 days that she lived, and I couldn't even decide what to order for lunch in the cafeteria, let alone make huge life or death decisions about her care. Maybe if I would've had more time to prepare before her birth, and let it all sink in..... Maybe, just maybe things would've been different.

Oh this guilt...... I don't know how I can live with this forever. It's not like my daughter was born sick and the doctors did everything in their power to save her.... I think I would be doing so much better in this journey if that had been the case. If we had exhausted all options and had no other choice but to let her go. Trying to live with the decision to not pursue the potentially life saving surgeries is just too much..... This is just too much to carry with me forever. I've always carried huge amounts of guilt with me about everything having to do with Freja - Her birth, her life, her death, and even two years after her death my struggles with keeping her memory alive.

It kills me to think of all that I've missed out on with her.... I never even got to see her beautiful smile. I'll never forget when the geneticist told me not to read too much online (which wasn't even an issue at the time because I had no internet access in the NICU, and also because we were so caught up with just spending every second with her that we could.) Why would he want to keep me from learning more about Trisomy 18 and making more informed choices for my daughter? Even if we had chosen to not persue all the surgeries that Freja needed, if I'd had an opportunity to do tons of research and ask all the questions I need to ask the 'experts,' and push the limits a bit, maybe I would feel better than I do now.

I just feel so let down. Like her life was not considered worthy in the medical field because she wasn't a 'normal' child. Was it because of the expense of the care she would've needed? So, so much guilt. I don't think I fought enough for her, my beautiful little baby with the brightest blue eyes I have ever seen.