Here's what's been happening in my head lately. Lydia will be six months old in sixteen days. DAYS. The norm for ZS babies is six months. I feel like I'm walking around a time-bomb. Every time I look at her, I hold my breath to see if she's breathing. When I go to change her diaper, sometimes my heart starts racing, wondering if it will be full of blood. There are days I feel like I'm losing the ability to live in each day, like we've always been trying to do.
Moreover, I have THIS sickening cycle going on in my head: I'm sad. Sure, I can feel happy and joyful and blessed, but underneath that is sad. Pretty much all the time. And please, for the love, don't tell me that I should be talking to someone or that I need medication. I'm sure both of those things are true. I'm not ready to do either of those things yet. OK - so, I'm sad. I'm ready to stop being sad. I'm ready to start healing. Funny thing about healing though. Apparently, in order to heal from something, it has to actually happen first. In my case, the thing I want to heal from is the death of my daughter. But she's still here. So, but default then, am I wanting her to die so that I can heal? What kind of horrible mother wants their child to die so they can start getting over it?
And then, THEN I start to think about what will actually happen when she dies. I was in bed last night, literally paralyzed by the thought of never being able to hold her in my arms again. I was trying to conceptualize what it will be like to put her down for the very last time, to kiss her for the very last time, to touch her skin for the very last time. And then I think to myself, I don't care what it costs me, how much I have to suffer, how badly I just want to curl up into a ball and die sometimes, PLEASE GOD don't take her away from me yet.
So, ok. Try doing that all day every day for the past week.
Add to that the fact that I'm friends with people (who I LOVE beyond words) who have babies and who are pregnant and have NORMAL lives and can have as many HEALTHY babies as they want. It's enough to want to throw my laptop out the window to keep me from tormenting myself by looking at them with their bellies or their arms full of babies. But I should be happy for everyone, right? Happy they aren't in my shoes? And I am. I'm so happy no one I truly love has to be going through this. But sometimes (I'll just say it for what it is) I'm jealous.
Add to THAT the fact that I just really would love to have another baby. But I don't by any means want to replace the baby that I have now. I just - not to sound arrogant - but I know I can be a good mom. That I AM a good mom. And I know right now it isn't wasted because I am going to LOVE this child that I have until forever. But what's the point of having so much love if you can't give it to someone? But then, how? How can we have another baby? Do we try to have one on our own? Do we adopt? If we adopt, do we adopt from the US or from some third world country? Because I feel like I DESERVE to do whatever is easiest. And I'm trying so hard to want what God wants and I know He doesn't owe me anything, but...CAN'T ONE THING JUST BE EASY?!
Hyperventilating? Yeah? Me too.
Swirl into all of that the knowledge that God loves me in an undeniable, heart-breaking, big kind of way. He SHOWS me this so often in the stupid, day to day shenanigans. For example, as I was sitting here, debating about whether or not to post this, I got an incredible e-mail from my sister's friend's husband's mom about how her mother had a baby girl who died when she was a couple months old. I won't tell you what it said, because nothing I could say could possibly do it justice. It was perfect. Just what I needed to hear.
A reminder that God hears me.
A reminder that I'm not as alone as I feel.
A reminder that there are bigger, more glorious things to come.
A reminder that tomorrow - tomorrow will be better.
In August of 2009 God changed our lives by giving us a beautiful little girl. Lydia was born with Zellweger Syndrome. Lydia went to be with Jesus in April of 2010. This is the story of her life and death, and of our journey through grief in search of healing.
ugh. Jen ....my heart is so heavy for you. Wishing I could somehow lessen the burden. But i know I can't. And not only can I not take it away, but I know I make it worse. I guess I just want you to know that I am reading and that I am crying with you, for you, and am looking forward to crying next to you, dear friend. Only because I want you to know how loved you are and how broken I am for you. I'm praying I'll have the right words to say to you when I'm with you, but I know I won't. I know I'll stay stupid, stupid things.
ReplyDeletedeep sighs, friend. that's all I've got.
Oh Jen. I just want to hug you. And you are not alone. When my girls were in the hospital before their deaths but after their brain damage I was discharged and forced home to sleep in my bed while my girls were miles away from me. I was so scared, and although I never lost hope, I knew the outlook was not good and struggled internally to find some peace in a very scary situation. At night I would pray that if my girls were only going to suffer that God would just take them, save them, because I just couldn't stand all the uncertainty, I just wanted them to be safe. And truthfully I also wanted to move on. It was so hard to be stuck in limbo so to speak, watching my babies struggle to live, watching their quality of life diminish before my eyes, and I was literally sick over it. I just wanted the pain to stop, for all of us. When they did die I felt like the worst mother in the world. Who prays for their children to die? Well, I am not the worst mother in the world and neither are you...we are only human and can only take so much pain, especially when it is our children that are suffering. The tricky thing was that my daughters' deaths did not bring the relief I imagined. I simply traded one pain for another. The fear became anger. The desperation became grief. The end was really just the beginning. Life is never the same. I wish I could tell you it is all down hill when the Lord finally takes Lydia home, but I cannot. It is a long road to healing. A real butt kicker.
ReplyDeleteAnd you are a wonderful mother. I daily feel angry and frustrated that good moms like us (and yes, I am a very good mother too, it is just a fact) don't get to keep their babies while bad moms do. Of course I am thankful for and blessed by my healthy son, but having one healthy baby did not make losing Aubrey and Ellie any easier. Someone even said that to me once, "At least you have one." Like somehow that makes losing my girls ok...I mean, what was I thinking wanting more than one child right? And now that I am pregnant again the new baby should erase my loss...one doctor advised us to remove my Aubrey from life support because "I am young and can still have more children." You can imagine how much that hurt me.
You are right that future children, however they come to you, will never replace your Lydia. I feel angry for you at times, angry because I feel like you are being robbed. I feel like I was robbed.
My heart is so heavy for you and I identify with your words so much. Life will never get back to normal and closure is illusive, but Christ will carry you and your healing will start...when it is complete however I cannot say. Heaven most likely.
Take a breath. God will hold you up. Our babies have it so easy...we unfortunately do not. It is a fight Jen. Seriously. You have to come out swinging! Just not yet. She is still here. Don't waste your time worrying about the "lasts." Soak in the present. Have a cup of tea and just love on her. I know that it doesn't feel like enough time and it isn't. All you can do is take the time you have...let tomorrow worry about itself.
-Rachel
www.aubreyandellie.blogspot.com
Oh, Jen, I totally felt the same way--with everything you said. That six month "milestone" is a tough one. Every day you wonder if it is her last. It this the last diaper I will change, is this the last time I will feed her, is this the last time we'll cuddle together? I hated that feeling so much.
ReplyDeleteIn all honesty, I too felt like we were just sitting around waiting for our daughter to die; almost like we couldn't get on with our lives as long as she was still here. I know that horrible feeling like you must be the worst parent ever. I even felt relieved (in a really messed up sort of way) when she was gone. My relief was mostly selfish--relieved that I don't have to somehow manage the super-mom schedule we were on anymore and relieved that I didn't have to explain over and over again to complete strangers why my 6-month old only weighed 9 lbs and had a feeding tube, and relieved that I could finally focus on building the family that I thought we deserved. But I was also relieved because I knew that she wasn't suffering anymore. Ya know what? In spite of all that, I am a good mom. AND SO ARE YOU!!!
All of those things you are feeling are totally normal for this totally un-normal situation. Parents should never outlive their children. Children should never have to suffer and die.
WHY CAN'T ONE THING JUST BE EASY? Oh, I know how you feel. I've been thinking that a lot lately with the upcoming embryo adoption. It feels like there are always setbacks, but I know that it will all be worth it--because it WAS all worth it with the last embryo adoption. Genevieve is certainly no replacement for Makenzie, but she is a wonderful little girl in her wonderful not-so-little way. You will find your path too.
I can't help but be jealous too of all the crappy parents out there. Soon after we lost Makenzie I got to watch a pregnant lady every day out my window at work--SMOKING! There were many times that I just wanted to punch her in the face--and I'm not a violent person!! She even knew our whole story and how bad I wanted kids and she would even make jokes about giving me hers. I would have loved to.
I'd love to tell you that it gets easier, but it really doesn't. Everything just changes. The pain changes from one type to another and it seems to kind-of come and go. Some days are definitely worse than others and sometimes I really want to escape from my reality. The good days outnumber the bad days now and I can smile when I think of her and I don't always cry when I talk about her. The pain is still there; it is just different now.
Call me if you ever want to just scream and vent about how bad it all sucks! I really am a good listener.
Lydia beautiful and amazing, I loved the other post with all the pics. I understand so much of where you are coming from, uncertainty was so hard for us with our daughter. Not wondering if, but when. Sending lots of prayers up for you, and your special little girl.
ReplyDeletePeace xx
Hi Jen,
ReplyDeleteLike these other posts, I certainly identify and empathize with the things you are feeling. While our situations are different, I know what it is like to prepare yourself for your baby to die- it is the worst feeling in the world. What you are feeling is very normal and it is OKAY!
It looks like you have amazing friends and support. I am one who prays (often with many tears) frequently for you and your family. I know that doesn't make things any easier at this time, but I hope you take comfort in all the support you have. I am always here if you ever need a listening ear. You are much loved and prayed for!
Hi Jen,
ReplyDeleteWe have never met, but I have been following your story ever since a mutual friend of ours posted your blog on facebook. My heart aches for you, and reading this was hard, but who am I to say what is hard, for what you are going through... there are no words. I see what you are going through every month, sometimes a few times a week working as a photographer with Now I Lay Me Down To Sleep. I see parents, like you, and their precious loves... in such a place where I am constantly questioning God. I don't think I've ever questioned God so much as I have since joining NILMDTS. But reading your blog reminds me that along with the questioning I need to have faith... more faith. You are an inspiration, Jen... whether you know it or not... your words and the kind of mother you are to your beautiful daughter inspire me to be a better person, mother, & Christian.
You and your family are in my thoughts, and prayers... always.