I wrote this post yesterday, which was a crazy mish-mosh of awful and great. Here's the awful. I'll post pictures of the great later. I couldn't decide if I wanted to post this, but I know there are women out there who are feeling the same about their sweet babies who are watching their babies suffer and I just want you to know you're not alone.
I'm angry today. I don't get angry often, but today I'm angry. Even less rare than my anger is the kind of anger that causes me to have "words" with God. Today, while I was home alone and Lydia was having a horrible time, I had words with God. The kind of words that I say through gritted teeth and choked back sobs, because I can handle a lot. I can handle that He's going to take her away from us and that maybe I'll never have another baby of my own.
But every now and then, I snap. Because I cannot handle seeing my sweet, sweet girl suffering the way she is.
I held her today as she writhed under the seizures and cried and cried...out of fear? Pain? I don't even know why my baby is crying and there's nothing, nothing, I can do to make it better for her. Knowing that eventually, in His time, He's going to take my girl to be with Him, I looked up at the ceiling and blurted out, "HOW LONG ARE YOU GOING TO MAKE HER DO THIS?!"
I hesitate to even write this, because there are several women I know who read this blog who have lost their babies. This huge part of me feels like being angry now while Lydia is seizing uncontrollably in my arms and screaming until she's purple isn't fair. Because at least I get to hold her. But for all that I know that it will hurt to keep breathing when she's gone, I want peace for her. And wholeness. And I want them now, while she's here with me.
But more than I want those things for her on earth, I simply want them. I want her to be peaceful and I want her to be whole. I know that saying this will sound like me saying I'm ready for her to die. That just isn't true. I'm ready for her pain to stop.
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.
Oh Jen. I know how you feel. When my girls were both still alive, but after their brain damage, I was home getting ready to go and see them and found myself sobbing in the shower telling God that I didn't even know how to pray. I DID NOT want to lose my girls, but I also DID NOT want them to suffer. They clearly already were suffering just trying to survive, but after their brain damage, living for them meant never walking, talking, and maybe never even being off breathing machines. I was scared to death for them, worried about their quality of life, and I asked God to just do what was best. I didn't want to lose them but I was willing to live without them so that they could be whole. I was horribly torn.
ReplyDeleteYou will remember saying those words to God after Lydia has left you and you will regret them. But let yourself off the hook. As mothers the grief of seeing our babies suffer is almost equal to losing them. I speak from experience. The day I learned of my girls' brain damage was almost as hard as the day their hearts beat for the last time in my arms.
All of this is hard. So hard. And you are doing great and what you feel is what moms who love their children feel. It is who you are and a reflection of how you love. Clearly you love unselfishly. Lydia is so blessed.
-Rachel
www.aubreandellie.blogspot.com
My daughter was stillborn and we never found out why because all of the tests came back normal. From the moment we found out that our little girl was gone I have kept a certain way of thinking. I'm grateful she didn't have to suffer. I'm grateful she left us when she did, instead of spending time with us and passing away (from SIDS for example) or being sick and suffering until her death.
ReplyDeleteIf mothers of children who have passed get upset with you for being angry at God for Lydia suffering "Because at least you get to hold her" then they are probably not to the "acceptance" stage of their grief. It's hard to lose a child. We're supposed to die before our children do. But it's far more difficult to watch a child suffer. You are a pillar of strength and I'm pretty sure that's what God is thinking when you have words with Him ;)
Hey Jen,
ReplyDeleteJust wanted to let you know that I was still reading your blog. It is a funny coincedence, in a way, because my last blog I wrote about my feelings of when I would be able to "let Joel go."
I know that you already know this, but it is all ok. I mean, it is ok to feel that way, it is ok to have "words" with God (as you also know, many people in the Bible did), it is ok to be torn up inside about your own feelings.
You just let it out, don't worry, eveyone will understand. Don't doubt for a minute that the moms that lost their children were also once in your position, feeling and speaking the same.
When Lydia is gone, you may look back and feel bad about what you said to God. On the other hand, you might remember it, and remember that it was your great love for her that brought those words out, and that now, in God's great love He is enfolding her and holding her. I think that might also bring you comfort... even through the pain.
Sending you lots of love and hugs,
Karen (Joel's mom)
As a mama who never got to hold her baby, let me encourage you to write this stuff. Spill your gets. Tell about the "blood on the walls." Even in our different experiences, I identify, because what we've experienced is the weight of the brokenness of the world. And what we have to look forward to is the brilliance of Redemption.
ReplyDeleteLydia will experience redemption. Sam will experience redemption. You and I will experience redemption. It is happening, right now, today, in our stories.
Praying for you, sister. Love, love, love your baby. You're such a good mama. --Megan
Holding you up in prayer Jen, you are so strong to even be able to write this. It is so hard for me to even accept that God allows this to go on, but I know He has a purpose for Lydia and you and Micah, and I pray that you have all the comfort from Him. Lydia is so blessed to have such a wonderful loving family and an AMAZING caring mommy. *big big hugs* Amy
ReplyDeleteOh Jen. I have been there, angry, choking back sobs, wondering how long the suffering goes on. I am so sorry you have to walk this road. You are an amazing momma. Thinking of you xx
ReplyDeletePeace and wholeness. Sounds like shalom. And that is our solid hope. It is real and we can be sure of it. We grab hold of it in our hearts by faith and then we have to trust him with the timing. Only his grace gives us what we need in the gap.
ReplyDeleteAnd he is giving you grace for the gap between believing what he has promised and enjoying what he has promised. I see it.