Thursday, April 29, 2010


We hope that those of you who can will join us for Lydia's memorial service to celebrate her life. It will be held at Calvary Evangelical Free Church in Trumbull, CT in the family life center on Saturday at 1:00pm. There will be a reception to follow.

Contributions in memory of Lydia can be made to the Kennedy Krieger Foundation via internet or via phone at 443-923-7300. Contributions may also be made to the Lydia Thompson Memorial Fund at Christian Heritage School - 575 White Plains Road, Trumbull, CT 06611 or contact the Development Office at 203-261-6230, ext. 590.

Wednesday, April 28, 2010

Many people have already heard, but our sweet girl went to be with Jesus this morning.

She was peaceful and quiet and in our arms.

When we know any details, we'll pass them on to you. Thank you so much for your prayers and your love for our girl.

Monday, April 26, 2010

New Neurologist

So, you know what's awesome? New neurologists who are helpful and change medication levels.

Our new neurologist Dr. M proved to be not shy about upping Lydia's medication levels. The one med that we started her on when she made the move to Yale (when she was two weeks old), Keppra, was the one that seemed to help her most at the beginning. Since it doesn't build up in the system the same as the other medication and since there isn't really a cap on how much we can give her, she chose to increase her dose of Keppra. Lydia has been on 1.5ml and today we bumped it up to 2.0ml. Next week we'll go up to 2.5ml and the next week we'll go up to 3.0m. Ultimately, in the next three weeks, we'll be doubling her Keppra. Just so you have an idea, our old neurologist would go up by .1ml. We're going up by .5.

She's also starting Lydia on a new med that's in the Ativan family but she should only need it twice a day as it is longer lasting. We'll still have the Ativan in case she has a seizure cycle that we can't break.

We started the new med and higher level of Keppra at 8pm and so far, no seizures. We'll see how it goes.

Thanks so much for your prayers for our appointment. We're so thankful for this new doctor. Since she's in a hospital, all overnight and weekend there is always someone on call. If we have an emergency, we'll be able to be in touch with a doctor pretty quickly. She also introduced us to the nurses that we would speak to if we called in and a doctor wasn't available. It's just so comforting to know there are people there all the time if we need it.

So, all in all, a good appointment.

Then I just have a quick prayer request. We're a little worried Lydia might have some kind of pneumonia. We started hearing the crackling sound in her lungs late last week and got her on an anti-biotic just in case. Her oxygen dips little low every now and then, but not bad. Would you please pray that the anti-biotics will work quickly and that the congestion in her lungs goes down before it becomes a problem?

Thanks, people. Have I told you lately how thankful we are for you?

It's a lot.

Thursday, April 22, 2010

This is Not My Home

Lydia and I had a visit from one of my good friend's from high-school, Faith.

Faith is the kind of friend who you don't see for a long time, but when you do it's like you were never apart. She is awesome. She is also an amazing photographer and took a bunch of pictures for us, which will be coming sometime in the not-too-distant future.

One of the things I love most about Faith is that she doesn't mess around when it comes to conversation. When we get together, we rarely small talk. This is a trait that I am coming to love more and more about people, as I do not really enjoy small talk. If I'm going to spend my time in conversation with you, let's TALK. That's what Faith and I do.

In between all of our discussions about the ups and downs of the past couple of years and realizing we've had some really high highs and terribly low lows, we concurred that both of us have those days when we look around at our lives and (as Faith put it) say, "This is not my home." I loved this because it put to words exactly what I've been feeling lately.

I was watching Prince Caspian the other day and in the first fifteen minutes found myself weeping like a loon at the part when the Pevensie children arrive back in Narnia. They feel a change and begin to realize that something stronger than them is pulling them to a different world. When they arrive on the beautiful beach of their beloved home in Narnia, they look at each other and the celebration begins. I was a mess because it was just one of those days when my soul wishes I could just close my eyes and open them and realize that I was home.

Don't get me wrong. I love my life. I love my husband and family and sweet girl, and all that I'm learning and know now about my Savior in heaven. But oh, some days my soul longs for it's true home.

I think about this for Lydia too. She will see her true home long before I will. As much as it hurts to think about losing her and as much as I wish she could stay in this home for longer, the part of my soul that longs for heaven longs for it for her too.

This is not our home. Thanks for that reminder, Faith.

Monday, April 19, 2010

8 Months

Dear Lydia,

You turn eight months old today.

I think only you understand how difficult it is for me to write this letter. You’re the only one who has been with me for almost every sad, helpless moment of this past month. This is probably the hardest letter so far. I’m having such a difficult time celebrating all of the sweet little moments with you like I used to. But I still try. I know that every moment I get to hold you in my arms is a gift, even if it sometimes is I gift I have to grapple with.

God has still been very good to me and given me such precious moments with you. I know, practically, that you can’t control when you seize and that no amount of rocking and loving from me is going to make you stop. But, there have been moments when you are screaming through a seizure and when I come and pick you up and rock you gently as I sing you our new song, you quiet down and fall back asleep. He knows I need those moments because for every one, there are ten awful ones that I can’t help.

You don’t wake up much now. The only time I get to see your beautiful eyes is when you are having a seizure. Every now and then, you’ll wake up for a few seconds. I’m not sure if you can see me anymore. It’s difficult some days to believe that you hear or understand anything, but deep down I believe your soul is still aware of what is going on around you. I pray every day that you feel how much I love you as I hold you close and whisper it over and over into your ear.

Whether you understand or not, we’re still trying to take you places and do new things with you. This month we’ve planted seeds, baked cookies, gone to the zoo and celebrated Easter! All things made better because they were done with you.

For all the bad, hard things there are still so many beautiful things. And until you aren’t here anymore, I will keep trying to show you things and keep making memories that I will hold in my heart until the end of my days.

I love you, sweet girl. Always will.


(My friend Amber made Lydia a tutu! Here are some pictures from our photo shoot! I was calling her "Tiny Dancer" and singing Elton John).

Baby ballerina feet.

Showing off her mad pliƩ skills.

Please note the chubby belly situation we have going on here.

Friday, April 16, 2010

Yeah...You know...

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.

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!

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:

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 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.

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!

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!