This has become my response to people when they ask how we're doing.
Things here are not awesome. We're pretty much living from dose to dose of Ativan. Sometimes it works. Sometimes she'll have seizures through the several hours until her next dose.
I envy moms who have kids who cry and you can fix it. Lydia cries and cries and there's nothing I can do. The worst part is that it's not even a big cry. It's a heart-breakingly pathetic wail. And there's nothing I can do to make it stop. Today I just held her close and cried and cried with her and apologized because I can't make it better.
She doesn't wake up anymore. The only time she opens her eyes is when she's having a seizure.
We have an appointment at CT Children's hospital, but it's not for over a week. I'm so thankful they could get us in - normally it takes months - but I just wish it were sooner.
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.
Love you.
ReplyDeleteSomehow saying, "I'm praying for you" doesn't seem like enough after a post like this, but I want you to know that that's what I'm doing.
ReplyDeleteYou don't know me, but my heart is breaking for you...wish there were words to make it feel better, but we all know that there aren't. So I will lift you up to Jesus and know that His comfort is better than any we can try to give you!
ReplyDeleteWe're praying for you three. Everyday. And every time we think of you. Praying that the appt would go well. That the week would go more smoothly for you and that you would get a sweet moment with Lydia to treasure in your heart today.
ReplyDeleteditto what jlanders said...I'm praying for you, and asking God to continue to carry you. My heart is breaking for you as well, and I keep reminding myself that the most and the best I can do for you is to pray. Ü
ReplyDeleteOh how I wish I had something to say or something I could do to ease your heart, to ease Lydias struggles. But of course I don't. But I think of you sooo often. I pray for you.
ReplyDeleteWish I could come and spend the afternoon with you . . .
ReplyDelete