I keep meaning to come here on days when my mood is lighter and my thoughts are filled with hope and happiness... Yes, I do have days like that. Of course, that doesn't mean that she isn't on my mind, but sometimes I do have days when I can smile when I think of her and our time with her.
Unfortunately, today is not one of those days. Today is one of those days where I am plagued by guilt for ultimately not fighting for my daughter's life the way I (now) know I should've. I would like to be coming here to say that as time goes on, the traumatic memories of having her die in my arms have softened, and that the decisions we were faced with have now been met with peace..... But that could not be further from the truth than how I am feeling in this moment.
It didn't take long once we came home from the hospital for me to begin my reasearch - I read, searched and found so many resources and supports online for families being faced with a Trisomy 18 diagnosis. I couldn't accept that the information given to us in the hospital about Trisomy 18 was as cut and dry as they said it was. I do accept that it is all they must know though - That Trisomy 18 is "fatal." Yet, every time I asked why it was fatal I don't remember being given a straight answer. Now though.... Now I know why. After reading the thousands of hours I have invested in learning more, and after connecting families who have fought for their children's lives and had insisted on medical treatment just as a child without Trisomy 18 would be given..... Now I know why. And now I am left with not only this hole in my life where Freja should be growing and thriving and living..... But also this overwhelming sense of responsibility for her death.... I did not do enough. How can one carry this burden with them forever? How am I supposed to not let this shred me from the inside out for the rest of my life? No wonder I have been filled with so much anger and this horrible feeling of isolation. How is anyone supposed to understand this heaviness and sense of responsibility unless they have walked this path themselves?
I know there is nothing I can do now. I know there is no turning back the clock and being able to educate myself so that I could make informed decisions about what feels right for my daughter and for our family. I know I can never do that. I put so much trust into those who were caring for her in hopes that they would gently guide us to decide upon the best possible outcome for our daughter. Being told there is zero chance of survival, when in fact with a fairly simple and common heart procedure which is done every day on chromosomally "normal" babies and even Trisomy 21 (Down Syndrome) babies..... I just cannot find peace with any of that..... I know my daughter would've never been a "normal" person had she lived...... But does that mean that she wasn't worthy of living? Does that mean that she wasn't worthy of being given all the opportunities that a child with "normal" chromosomes would've been offered? I am just so angry and sad.... The tears are spilling out of my eyes and I know there is nothing I can do to change this..... I cannot go back in time, but I struggle to move forward too with what has happened in the past.... This guilt is just too much. I should have done more and now it's too late so I have no other choice but to wake up each morning with this heaviness on my heart...
SGM Visits The Alpha Sigma Phi Fraternity House
4 years ago
2 comments:
I am so sorry you are struggling with guilt. I struggle with it too...what if we had waited longer to see how bad his brain damage was, etc. My mother in law told me and still tells me this all the time: You did the best you could with what you had at the time. And some of the time, I can be ok with that. It's those other times that are so hard.
I'm so sorry you feel such guilt. I blame the drs for not telling you more. Freja had a right to be given a chance and I feel they took it away from her just b/c she had T18. I know you would of done everything you could if you had known. ((hug))
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