I have been having a really hard time lately (what else is new?)
I haven't understood a large part of my grief in the past two and a half years. I've watched those around me who've lost their babies make huge strides in processing and dealing with their grief and moving forward with their lives, yet I still feel very close to where I did, oh let's say, a few months after losing Freja.
I still struggle with socializing. Even with family.
I feel very misunderstood because of the burden I carry with me each day. And alone.
I feel immense, horrible, suffocating guilt over not following my "mother's instinct" and insisting she be treated just as any other baby without an extra chromosome would've been.
I feel burning, raging anger towards those we placed our trust in, those who we looked up to for guidance, knowledge and answers, when we had none. And this anger boils over into my every day life more that I am comfortable with. I don't want to be an angry person who can snap at any given moment.
I also feel very let down by those who we sought guidance from. Their lack of knowledge means that my daughter was robbed of a fair chance at life. I have a very hard time with getting advice from others now, especially anything having to do with doctors. That trust is completely gone.
I have become more active in the "Trisomy" group that I discovered a few months ago. I don't know if it's a good thing, or a bad thing. I often wish I still could just live in the dark and believe what we were told those 32 months ago - That our daughter had absolutely no chance at life, even with all the medical advances that have been made.
I know that I will never know for sure how things would've turned out if she'd had the surgeries she needed. And for that reason, I'm certain I will always be tortured by the "what if's..." I cannot put this to rest without knowing. My mind just does not work that way. This is what I feared, when we finally agreed to allow "nature to take it's course," and decided not to put Freja through surgeries and medical interventions.
It's not a decision that any parent - EVER - should have to be faced with. How do you live with these decisions, when you will never know if taking the other path might've led you to a much more positive outcome? How are you supposed to find peace in this mess? I feel so stuck....
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4 comments:
(hugs to you) I can't sit here and say if gets better because each person is different. Each person carried there grief differently. It's a roller coaster...it really is. I think the feelings that you are feeling are all "normal". I've found myslef at time huddled inthe corner crying my eyes out from grief. I, to this day don't trust doctors. I love my ob/gyn, he has great bedside manor, but because of events that occured in the weeks leading up to SHealyn being born has definently turned me off to "him being a great doctor". WE will always have what if's. That is something we all have to life with. I prayer you find peace. Thoughts, hugs, and prayser to you.
Emma was born VBA2C - and it was vaginal birth that killed her. And I will always wonder if a c-section might mean I had both my daughters tucked up in bed right now, instead of just one. SO, although my story is different, on some level I can relate to what you are saying.
For me, I had an inkling right through my pregnancy that I wouldn't get to keep my baby. And, although, I hate knowing that instinct changed nothing, it does bring me a measure of peace because I tend to think that a different birth would not have changed mt scenario only the story of it.
I hope you find a way to become unstuck and feel peace in the decisions you made and the advice (or assvice, as I have heard it called)you were given. Decisions that you made with a mother's heart and complete love for Freja.
Believe me, I haven't understood much of my own grief and how I can be where I'm at today and still be functioning. (Especially when I know that if this ever happened again I don't think I could face it with as much grace.)
I think it's hard to find peace over decisions you've made when you constantly wonder if they were the right ones. It's hard not to think about. You wish you could go back and do-over and maybe it would make a difference. It's hard too when you don't have caregivers in your corner giving you the right information and support.
It's also hard to know what decisions are the right ones to make when you are still processing difficult information like Freja's diagnosis. (And so many telling you she had no chance.)
We do the best for our children that we can in the moment with what we know. And it's hard to not compare grief to those around us. I've done it myself and it just doesn't make me feel that good so I've stopped doing it. We each have our own journey and I hope that all of us can find ways to get us through it all.
Holly,
You have to believe that Freja is at peace and that she loves you and accepts any decisions that you ever made regarding her care. You made all of your decisions out of love and in the end that is all we can hope for. I often play the 'what if?' game too but I always look at pictures and videos and remind myself that I LOVED Georgia. I still do. Just like you LOVE Freja. Now, just try to love yourself and if we're both lucky we'll forgive ourselves for not saving them...
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