Originally a CaringBridge post. Link to original post is the date.
It’s been weeks since I made an update. Last time I said I wasn’t having any contractions and things were relatively normal. Well I’ve eaten my words and then some. The day after I said those words I started in on heavy braxton hicks and real contractions. They’ve only intensified as the days go by. Being 36 weeks is terrifying on so many levels and I truly wish I could articulate exactly why. That means one week and one day before I gave birth to Kanin. One week. That gives me four weeks before my due date, and five weeks before a mandatory induction. I’m not ready.
These past few weeks has been beyond taxing. I’m essentially going through this alone. I’ve lost my support system out here other than one person and quiet frankly, I’m sick of being so isolated and alone. No matter how much I try to explain how I feel, or what I’m going through, only one who’s gone through this truly understands. Everyone else can try to understand, but in the end it’s not enough. That sounds horrible and mean. Unfortunately it’s the truth. I can’t and don’t expect anyone who isn’t/hasn’t gone through this to fully understand. What I expect is someone to be in my corner no matter what, to try to encourage me and not bring me down. Not ignore what I’m saying and continually go behind my back and make my life more difficult. Plain and simple, that shit makes life hard. Isn’t my life hard enough right now? No support in a tiny town. No family around to make up a support system. Mentally preparing myself for the imminent death of my one and only daughter. Also preparing for the physical needs of what her death entails. This is hard. Of course it’s normal for it to be hard. That doesn’t make it any easier or less difficult to deal with, especially alone.
I’m tired of being tired. I’m tired of feeling broken, run down and doing everything alone. Being as broken as I am, I fear I will never be put back together. That’s not okay, not even the slightest bit. I’ll never be able to mend that broken part of me that Aerilyn’s outcome has shattered. As much as I try to celebrate her life, I’m too much of a realist to know those moments aren’t going to be enough to “fix” me or replace her presence. I’m trying to hold on to these last few weeks as much as I can and because the world keeps spinning, I can’t.
I wrote the above a little less than a week ago. Since then not much has changed, except I’ve met two local women who’ve gone through what I am. One lost a daughter to anencephaly, the other a son to acrania. In these past few days they’ve been so helpful, caring and compassionate. I’m truly glad we’ve connected and have something so unique to us to bond over. Although the situation is awful, at least it gives me someone who can fully relate. I look forward to getting o know these women more and sharing our children with one another.
Getting them does no negate how I’ve been feeling, nor to is make everything right in my life. It just gives me hope and somewhere to turn to when everything is said and done. At least I sure hope so.
I’ve done a lot of reading recently. Mainly about grief, what to say and not to say to those who’ve gone through child loss and what might be beneficial to me once I do give birth. This first link what given to me by someone who does believe in God, but can still relate to these words. We want our children here with us. There’s nothing anyone can say to make our grief stop, lessen or to comfort us. Or at least me, I can’t fully speak for her. The only thing I want and what would help is for my little girl to stay with me. Not go to heaven, not go frolic with the stars, not be anywhere but in my arms. This post resonated with me so much because although I do believe there is something out there, I don’t have a specific belief. This shows a side of grief that I haven’t been able to portray yet without being offensive. http://www.alternet.org/belief/my-child-not-heaven-your-religion-only-makes-my-grief-harder
This next link is more religious and while I don’t fully relate, I can see how obnoxious these are. I know there’s a reason for everything, but I cannot wrap my head around why a innocent child would have to be sacrificed for the “greater good”. I know I’ll find a purpose one day as to why Aerilyn had to pass, but today is not that day. Until then, I just try to survive and think of her in everything I do. I don’t pray, I don’t believe my daughter can be fully healed, I don’t believe that there’s some mighty force playing puppeteer and looks at me specifically to “close one door and open another”. These beliefs or lack there of make seeking help of comfort from others difficult. So think about this post next time you’re talking to someone who’s going through grief. http://communicatingacrossboundariesblog.com/2015/09/28/stupid-phrases-for-people-in-crisis/
Somethings to would actually help would to actually be there. Don’t act like you are, truly be there. Listen to what is being said. Act on it even if it seems silly. Clean their house, cook them food, just take their other kids out so something stays normal for them. Don’t be stagnate and say you’ll help, actually do it. Don’t stop. Don’t stop being their friend because what they’re going through is too hard for you. Don’t stop trying even when it seems like that person doesn’t need or want you.
I’ve seen abandonment many times in the past few months, with me, with friends and with random people who are all going through grief. Those people just show their true colors and how crappy of a “friend” they really are. No one in my situation, of in this Grief Club should have to learn the hard way that their friends, their support and their confidants are fake. It makes what we’re going through even worse. Seeing someone so ugly just makes you feel betrayed and questions your judgment. It is truly an awful experience to know you’ve been abandoned in the most critical time of your life.
It sucks knowing how little Aerilyn’s life is valued by others. Maybe I’m more invested in it because I did so much fertility work with it. Maybe it’s because I’m physically carrying her. Whatever the case, I’m doing everything in my power to make her life matter, her memory matter and to make sure I’m a good mom to Kanin. Everyone else be damned. At least in the end, I know that I did everything I could to make both of their lives better and meaningful, no matter how many road blocks keep being out in front of me.
At least Halloween was fun for Kanin. We all dressed up. Josh as Mike Wazawoski, Kanin as Sully, me as Celia and Aerilyn as Boo. He loved trick or treating and was so nice and polite. Even if that were our last holiday with Aerilyn, at lest I know she was involved. Thank you to my sister for making my costume as well. It turned out amazing. I sure as hell hope I make it to 40 weeks, which gives me Thanksgiving with her. I need one less holiday tainted by full loss.
I’ve written this over a the course of a week. Normally I go back and edit and take out my “emotionally fueled” rants and what not. Not this time. I don’t care. I 100% don’t care who reads what, who knows what. I just don’t. None of what’s going on in my life is my fault. I’ve always wanted the best for my family and I’ve always sacrificed myself for that. For the greater good of my family. Keeping things to myself for the sake of others reputation, or feelings. Well since mine are so easily disregarded, I see no point in being PC.