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.
Friday, April 16, 2010
Thursday, April 15, 2010
I'd Like to Take This Moment to Say...
THANK YOU to two of my friends, both coincidentally named Amber.
My friend since high-school Amber is the woman responsible for making my blog look so lovely and for keeping the pictures in the header updated. I am mostly technologically impaired. I can type. I can post. That's all I've got. Creating things electronically is not something I am capable of. I send her pictures and she makes everything look beautiful.
Then, my friend since four years ago Amber has made the lovely "Praying for Lydia Eileen" button you see on the side-bar of our page. If you have a blog and are so inclined, you can add it to your blog so people can link over to read about our girl from your page. She just updated it with a new picture, so if you have the old button, you can replace it with this one!
Thank you, Ambers for doing all of the awesome things I cannot! Love you both!
My friend since high-school Amber is the woman responsible for making my blog look so lovely and for keeping the pictures in the header updated. I am mostly technologically impaired. I can type. I can post. That's all I've got. Creating things electronically is not something I am capable of. I send her pictures and she makes everything look beautiful.
Then, my friend since four years ago Amber has made the lovely "Praying for Lydia Eileen" button you see on the side-bar of our page. If you have a blog and are so inclined, you can add it to your blog so people can link over to read about our girl from your page. She just updated it with a new picture, so if you have the old button, you can replace it with this one!
Thank you, Ambers for doing all of the awesome things I cannot! Love you both!
Sunday, April 11, 2010
Lesson Learned on a Sunday Evening
I have a new friend. Her name is Megan. I don't recall ever having met a Megan I didn't love. Regardless, though Megan and I have yet to actually meet and we've only been "talking" via e-mail for about a month, she has been an incredible blessing to me. She lost her sweet baby boy to a genetic disorder and she has encouraged me as I stare down what is coming and she has been real with me as she walks through her own grief. I've been incredibly thankful for her.
She said something to me in an e-mail a couple of days ago that had not really occurred to me. I'm a little ashamed to admit that I hadn't thought of this before. But I've just had a very profound moment where what she said impacted me very deeply, where God used her words to speak to me in a moment of panic and anger.
Megan said, "I think motherhood is a spiritual endeavor, but being the mother of one of the very least of these is really a slap in the face to the Enemy. What you and I have done for our babies sings of the sanctity of human life, and Satan hates it. I know you know this. I just say it to remind you that there is a great deal of good vs. evil, spiritual warfare, in your everyday routine with Lydia."
Now, I'm not one to see the devil hiding around every corner. In fact, I tend to go more in the opposite direction. Not that I disregard him or don't know he has power, I just tend to not want to blame the bad or difficult things in my life on the devil. But honestly, let's just say it like it is. Some of the things that go on here, and specifically some of the feelings I have are NOT of the Lord.
For example, tonight. Lydia has had a really difficult day today. I mentioned in my previous post that we're working on getting her medication corrected. Tonight, just a few minutes before Micah left for youth group, Lydia started having pretty rough seizures. She was screaming, crying, and stopping breathing. I still had over and hour before I could get her another dose of medication. She seized non-stop from the time Micah left, until I gave her the medication which was over an hour.
I started getting really worked up. And then I started crying. And then, I got angry. My head started doing something like this, "If these seizures, these seizures take her life, I will not have done enough to help her. I should have been on the phone EVERY DAY last week to make appointments. I should have been pushier with her neurologist to get higher dosages. I am NOT doing everything I can to help her. If she dies from these seizures, it will be my fault."
Yes, my friends, it's been a lovely evening here in the Thompson home.
I got her medicated, got her in bed and she calmed down. I came out, sat on the couch and tried to take deep, cleansing breaths. With each breath, as the voices in my head started to quiet, I heard that small, sweet voice coming from the back corner of my heart. You know the one I'm talking about - the one you KNOW is the one voice you should listen to.
"Stop it. You know what the truth is. If the end of her days comes tonight, it is not because of anything you have or have not done. It is because these are the number of days I have ordained for her. If today were the day, no amount of medication would fix it. Stop panicking. Stop blaming yourself. The guilt, the fear - those emotions are not from Me. Remember the truth."
Yep. I love when God tells me to knock it off. I have a feeling this won't be the last time I hear it.
The devil. He's a sneaky dude. It is INSANE to me that he can use the love I have for my child and twist it to a place that says loving her means saving her, and if I don't save her, if I can't take away the things that hurt her, I must not love her. I don't know why I think that since I'm going through this time that the devil would stay away from me. Everything in the Bible points to exactly the opposite. He doesn't play fair.
I need so much to remember that. And more importantly, I need to remember this:
She said something to me in an e-mail a couple of days ago that had not really occurred to me. I'm a little ashamed to admit that I hadn't thought of this before. But I've just had a very profound moment where what she said impacted me very deeply, where God used her words to speak to me in a moment of panic and anger.
Megan said, "I think motherhood is a spiritual endeavor, but being the mother of one of the very least of these is really a slap in the face to the Enemy. What you and I have done for our babies sings of the sanctity of human life, and Satan hates it. I know you know this. I just say it to remind you that there is a great deal of good vs. evil, spiritual warfare, in your everyday routine with Lydia."
Now, I'm not one to see the devil hiding around every corner. In fact, I tend to go more in the opposite direction. Not that I disregard him or don't know he has power, I just tend to not want to blame the bad or difficult things in my life on the devil. But honestly, let's just say it like it is. Some of the things that go on here, and specifically some of the feelings I have are NOT of the Lord.
For example, tonight. Lydia has had a really difficult day today. I mentioned in my previous post that we're working on getting her medication corrected. Tonight, just a few minutes before Micah left for youth group, Lydia started having pretty rough seizures. She was screaming, crying, and stopping breathing. I still had over and hour before I could get her another dose of medication. She seized non-stop from the time Micah left, until I gave her the medication which was over an hour.
I started getting really worked up. And then I started crying. And then, I got angry. My head started doing something like this, "If these seizures, these seizures take her life, I will not have done enough to help her. I should have been on the phone EVERY DAY last week to make appointments. I should have been pushier with her neurologist to get higher dosages. I am NOT doing everything I can to help her. If she dies from these seizures, it will be my fault."
Yes, my friends, it's been a lovely evening here in the Thompson home.
I got her medicated, got her in bed and she calmed down. I came out, sat on the couch and tried to take deep, cleansing breaths. With each breath, as the voices in my head started to quiet, I heard that small, sweet voice coming from the back corner of my heart. You know the one I'm talking about - the one you KNOW is the one voice you should listen to.
"Stop it. You know what the truth is. If the end of her days comes tonight, it is not because of anything you have or have not done. It is because these are the number of days I have ordained for her. If today were the day, no amount of medication would fix it. Stop panicking. Stop blaming yourself. The guilt, the fear - those emotions are not from Me. Remember the truth."
Yep. I love when God tells me to knock it off. I have a feeling this won't be the last time I hear it.
The devil. He's a sneaky dude. It is INSANE to me that he can use the love I have for my child and twist it to a place that says loving her means saving her, and if I don't save her, if I can't take away the things that hurt her, I must not love her. I don't know why I think that since I'm going through this time that the devil would stay away from me. Everything in the Bible points to exactly the opposite. He doesn't play fair.
I need so much to remember that. And more importantly, I need to remember this:
Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.
Friday, April 9, 2010
Neurologists and Cookie Baking
Lydia's seizures continue to be not very well controlled. Our neurologist, though very helpful and very cautious, is not as pro-active in treating her seizures as we would like. I've been speaking with my friend Jen (Lilly's mom) regarding her medication and have put our doctor in touch with hers. We're also trying to get in to see a different neurologist up at CT Children's Hospital, just to have another set of eyes on her. But, we're not sure yet when that will be. The Atavan has become really hit or miss in its helpfulness. Sometimes it works and she sleeps for hours. Other times (like last night at 1am) we give it to her and it takes two hours to see any results.
It's getting frustrating. We're doing our best to be pro-active and hopefully we'll have some solutions soon. Meanwhile, we plug along and always appreciate your prayers.
Today, Lydia and I baked cookies for a friend's birthday! Well, I did the baking. Lydia supervised.
A little for Lydia...
Some of the finished cookies!
It's getting frustrating. We're doing our best to be pro-active and hopefully we'll have some solutions soon. Meanwhile, we plug along and always appreciate your prayers.
Today, Lydia and I baked cookies for a friend's birthday! Well, I did the baking. Lydia supervised.
A little for me...
A little for Lydia...
Some of the finished cookies!
Monday, April 5, 2010
A Day at the Zoo!
It was a beautiful day this past Saturday and we made plans to go to the zoo with some of our very good friends (Lydia's godparents) and their girls.
Lydia and Evangeline as peacocks!
Eric, Adlien, Micah and Lydia hanging out with the prairie dogs!
Zonked out in the stroller in her rockin' sun hat.
This child is amazing. She knew where everything was in the zoo and couldn't wait to show everything to us and especially to "Baby Lydia." She was a great little tour guide!
Goofy shenanigans with Amy.
Very warm and very sleepy.
Adlien and Eric on the carousel.
Sarah and Evangeline on the carousel.
US on the carousel!
Best friends!
Special thanks to Kristin who is allowing us to borrow this amazing stroller, making it possible to take Lydia to a variety of places without being scrunched up in her car-seat, to Sarah and Eric for letting us use their visitor passes to get into the zoo for free and for just being generally awesome, and to Carissa for taking all of these beautiful pictures!
It was a pretty awesome day.
Here Lydia and I are, ready for our stroll through the zoo.
Necessary family picture for Lydia's first trip to the zoo.
Lydia and Evangeline as peacocks!
Eric, Adlien, Micah and Lydia hanging out with the prairie dogs!
Zonked out in the stroller in her rockin' sun hat.
This child is amazing. She knew where everything was in the zoo and couldn't wait to show everything to us and especially to "Baby Lydia." She was a great little tour guide!
Goofy shenanigans with Amy.
Very warm and very sleepy.
Adlien and Eric on the carousel.
Sarah and Evangeline on the carousel.
US on the carousel!
Best friends!
Special thanks to Kristin who is allowing us to borrow this amazing stroller, making it possible to take Lydia to a variety of places without being scrunched up in her car-seat, to Sarah and Eric for letting us use their visitor passes to get into the zoo for free and for just being generally awesome, and to Carissa for taking all of these beautiful pictures!
It was a pretty awesome day.
Sunday, April 4, 2010
Resurrection Day
I have always loved Easter. When I was a little girl, it was so wonderful to get all dressed up in a new dress, complete with a white straw hat, white patent leather shoes with matching purse, and (my favorite) white gloves. I loved going to church and piping in to say, "He is risen INDEED!" when it was said to me first. I loved singing at the top of my lungs the beautiful Easter hymn proclaiming Christ's resurrection and the life we now have through Him.
This year, I had a sweet little girl to put in a pretty new dress and an Easter bonnet with white patent leather shoes. The most awesome thing about Lydia's dress is the wonderful woman who bought it for her. Cathy bought me and my sister's a lot of our Easter dresses and I was THRILLED that she wanted to buy Lydia her first Easter dress. She did a darn good job picking it out! She put the little rose buds on the shoes (and my mom put them on the bonnet!).
Thank you Cathy for making Easter in our house a little more beautiful!
This year, I had a sweet little girl to put in a pretty new dress and an Easter bonnet with white patent leather shoes. The most awesome thing about Lydia's dress is the wonderful woman who bought it for her. Cathy bought me and my sister's a lot of our Easter dresses and I was THRILLED that she wanted to buy Lydia her first Easter dress. She did a darn good job picking it out! She put the little rose buds on the shoes (and my mom put them on the bonnet!).
Thank you Cathy for making Easter in our house a little more beautiful!
Happy Easter
I had the chorus of this song stuck in my head all day. It seems so appropriate, especially verse two. May you have a blessed Easter, in praise for all our Savior has done. He is RISEN!
God sent His son, they called Him Jesus;
He came to love, heal and forgive;
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives!
How sweet to hold a newborn baby,
And feel the pride and joy she gives;
But greater still the calm assurance:
This child can face uncertain days because He lives!
And then one day, I'll cross the river,
I'll fight life's final war with pain;
And then, as death gives way to vict'ry,
I'll see the lights of glory and I'll know He lives.
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
He came to love, heal and forgive;
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives!
How sweet to hold a newborn baby,
And feel the pride and joy she gives;
But greater still the calm assurance:
This child can face uncertain days because He lives!
And then one day, I'll cross the river,
I'll fight life's final war with pain;
And then, as death gives way to vict'ry,
I'll see the lights of glory and I'll know He lives.
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
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