Six Months

Today is six months since our sweet girl went to be with Jesus. I have a lot of things I could say, but I don't really feel like talking. Instead, I'm posting a video. I watched almost all of the videos of her that we have this morning. I love remembering the sound of her breathing and the little movements she made and the sound of her little squeaks, even if they were seizure induced.

The video is a little out of focus but you still get the overall adorableness.

Lydia from Jen Thompson on Vimeo.

A Stone for Lydia

My friend Megan, who has walked through her own painful time with the loss of her son, wrote Lydia's (and many other babies' in heaven) name on a stone. She sent me some pictures and I wanted to share one of them with you.


To have Lydia's name spoken or written does something in my heart that I can't explain. Thank you, friend, for remembering our girl.

Happy Birthday, Baby

Today would have been Lydia's first birthday. I won't try to explain here what that means or how I feel about it. I just wanted to post pictures - one from each month birthday we had her with us. Even though she's not here now and my heart is broken, the remains of my heart that are awaiting healing beat over and over with these words - she was here.

Even though I will cry and wish I could see her smoosh a cupcake all over her sweet little face, I will celebrate all that she was and all that we had when she was here. And I will do my best to celebrate all that she is and all that she has now.

Lydia's Tomatoes

You might remember the post where Micah and Lydia planted seeds to grow in our garden. The garden has been flourishing and I wanted to share with you a couple pictures of Lydia's tomatoes.

Lydia didn't plant the sunflower, but everyone loves a nice sunflower picture.

Thanks to everyone who prayed for my Grandpa Roy. He should be going home from the hospital today. If you would, please pray for his recovery. He'll have more treatment ahead of him after he recovers from surgery, but right now recovery is the goal.

Triathlon COMPLETED!

Liz finished the triathlon today! Head over to her blog for more pictures and her story about the day! Love you Liz and am so thankful for you.

Three

I remember my affliction
and my wandering, the
wormwood and
bitterness.
Surely my soul
remembers
And is bowed down within me.
This I recall to my mind,
Therefore I have hope.
The LORD's
lovingkindnesses
indeed never cease,
For His compassions never fail.
They are new every
morning;
Great is Your faithfulness.
"The LORD is my portion,"
says my soul,
"Therefore I have hope in
Him."

I won't lie. I've been choking out the last half of those verses these days. I say choking because this past month, I've felt more in the grip of my afflictions than I have yet. It's like hands around my throat, all the time, strangling me into submission...into letting the grief swallow me up. It would be so easy to just let it. To stop fighting. To stop getting up every morning. To stop going out. To stop loving people. To stop caring what happens to anyone but myself. To shut the world that moves on without my girl and to live alone here in my house where I can make time stand still. It would be so much easier.

But just as I feel myself ready to give up the struggle and let the hands of grief stop my breath, something in me starts to scream and I'm able to choke out the words,

His lovingkindnesses never cease.
Therefore I have hope in Him.

Every time I say it, I weep. I gasp and cry and the hands back away from my throat. I sob as the truth sets in. It doesn't make it better now. But it keeps me going.

So, I keep going. I will keep going.

For the LORD will not
reject forever,
For if He causes grief,
Then he will have compassion
According to His abundant
lovingkindness.

Mural

Last week, we were asked to stop over at CHS by a some students who said they had something they wanted to show us. When we arrived, they walked us down to what was previously my classroom. A small group of students were gathered outside the door. They told us that they wanted to have something in the school that was a memory of Lydia.

This is what they made.




The kids at this school are the reason I loved to teach. They are the reason I would ever want to teach again. And they're the reason we decided to have a fund in Lydia's name at the school, so that there can be more opportunity for more wonderful people to be a part of such a wonderful community. If you haven't already, I hope you'll consider buying a Lydia Pin and donate to the fund at CHS.

All of you beautiful, wonderful people who helped make this incredible gift - thank you. Thank you for loving our girl and wanting her to be remembered in the school. Thank you for loving us and reminding us that she's in her true home now. We love and are so thankful for you all.

Ezra 3:11-13

Several weeks ago, I was having a series of dark days in a row. In a desperate moment, as I was sitting talking with my friend Lisa, I uttered the words, "I wonder if I'll ever be happy again." It was an honest enough thing to say to define how I was feeling. I continued to muse out loud that I supposed whether or not I would be happy had everything to do with how I went about defining happiness.

Wise woman/Bible scholar that she is, Lisa recommended that I attempt doing a word study. I scoffed at her idea. Yes, let me do a word study, I though. I can already tell you what I'll find out. I'm supposed to look for my joy and contentment in Christ. If I try to find it in anything else I will be disappointed. There. I'm a good Christian girl and I already know what's there to be found.

She smiled and said that it's not always about what you find. It's about what you learn in the process.

The next day, I picked up my Bible, sat down at my computer with biblegateway.com at the ready. I thought for a second about what word to start with. Now, I don't actually know how to do an official word study, so I was just making things up as I went along. Since my initial question was regarding happiness, I started there. As I suspected, there wasn't much that was helpful to me there. I tried joy/rejoicing next. I found several interesting things. The one that most caught me was Ezra 3:11-13.

Now, other than a little here and there during high school and college, I haven't really had any interaction with Ezra. Even if I had, I probably wouldn't have responded to these verses in the same way then as I did when I read them a couple weeks ago.

To give a little context (and again, I'm no Bible scholar so forgive me if any of this is woefully inaccurate), the Israelites had been slaves in a foreign land for many years. Finally, as some of the Israelites had gotten into the good graces of the king, he allowed them to return to Israel after many years of captivity to begin to rebuild the city of Jerusalem and the temple, both of which had been destroyed.

In these verses, the people had just laid the first stones for the new temple.

Ezra 3:11-13

They sang, praising and giving thanks to the LORD saying, “For He is good, for HIs lovingkindness is upon Israel forever.” And all the people shouted with a great shout when they raised the LORD because the foundation of the house of the LORD was laid. Yet many of the priests and Levites and heads of fathers’ households, the old men who had seen the first temple, wept with a loud voice when the foundation of this house was laid before their eyes, while many shouted aloud for joy, so that the people could not distinguish the sound of joy from the sound of the weeping of the people, for the people shouted with a loud shout, and the sound was heard far away.

Now, this didn't particularly have anything to do with the joy I am attempting to find in life right now, but it offered a different perspective. This thought has rolled around in my head but it is so succinctly put here that I haven't been able to keep this verse out of my head since I read it.

Grief and joy. They go together.

It is right and good that there should have been shouts of rejoicing from the people as the new foundation was built for the temple. Part of you would think that there should only be shouts of joy and that there is really no cause for the cries of sorrow that accompany it. But these men who were weeping at the former glory of the temple were the ones that saw it destroyed. They were lead away from a broken city, a ruined house of God into slavery not knowing when or if they would ever return. They remembered how things had been, and were grieved that they were not that way still.

In the midst of their weeping, shouts of joy were being raised at the same time, albeit by different voices. These were the shouts of men who knew that there would be glory again in Jerusalem - that God would live in the temple again. They were the shouts of possibility and praise for a new beginning.

The cries of sorrow for what has been lost and the shouts of joy for the new work being done were indistinguishable. The one is irrevocably linked to the other.

In every new thing that happens without Lydia here, there is potential for sorrow. It's a sorrow so deep that some days, it stops me in my tracks, wishing the earth would open up and swallow me whole. It's a sorrow that remembers the hope of what was, the joy of what has been taken away, and forces out of me a wild cry of pain for what has been lost.

But, there is in every new thing the potential for joy as well. In every new opportunity, in every new day, in every new life there is an opportunity to allow a shout of joy to rise up in me.

There isn't one without the other anymore, and that's a wonderful and terrible thing. With great sorrow comes the possibility for abounding joy. The deep, expansive places that sorrow has left empty, joy would fill and flood over and over again.

But that's a choice I have to make. I didn't ask for this pain, but I have a choice of what to do with it now that it is part of me.

I have to be the man who covered his face and wept for the temple he remembered from his youth and I have to be the man dancing in the street, proclaiming God's lovingkindness for me. Granted, it makes for one emotionally unstable looking person, but I think it's right. There is no deep sorrow unless there has been a loss of great joy. There is no great joy unless you have known deep sorrow. Angie Smith calls it, "The Sacred Dance of Grief and Joy."

It doesn't entirely answer my initial question, but as always, it gives perspective. I will be happy again, but it won't be the kind of happy that I've known before. It won't be the easy, carefree, happy-go-lucky type of happiness. It's something deeper that comes from knowing how quickly we can lose the things we love the most. It isn't the kind of knowledge I'd have wished for, but I have it now and I can't give it back.

Instead, I want to learn to live my life in remembrance of these things. I know that because I have suffered, I have now an even greater capacity to be joyful and to love and to celebrate. Always, I will wish that my sweet girl was here to share these things with me and always I will be thankful that her life taught me these things. Though there is the possibility for endless emptiness in a life without her here, there is also the possibility for a life of endless fullness because she was here at all.

For my part, I would rather honor the life that God gave her by living a life of joy. I don't know exactly what that means or how I'm going to do it, but I want to try.

The Lydia Pin

Speaking of awesome people doing awesome things...

My dear friend Megan, when she heard about Liz doing the triathlon, decided she wanted to use her talents to do something to help raise money for Lydia's fund at CHS too. Link over to her blog and read about her new project - The Lydia Pin.

Thanks, Megan. Love you, friend.

Headstone

Lydia's headstone was placed at the cemetery today. I've been anticipating this, expecting to feel a sense of relief at the stone's arrival - relief that the last piece was in place, that everything was complete.

I don't feel relieved. I feel wretched.

It's permanent now. She won't come back to me. I know that it was permanent before, but there's something now that marks the permanence.

My fingers traced the letters of her name, her birth and death days. Finally they traced the words we had engraved there - Safe in His arms.

Now, as I sit quietly attempting to cope again with the ache that has taken up permanent residence in me, the same words echo softly but steadily in my heart, as they did on the day we buried her.

Death is swallowed up in victory.

Moments of Clarity

God is good. In the midst of my sorrow and my times of weeping for what I've lost, there are moments of clarity when I can look at my life, my situation, and see things for what they truly are. Now, we all may have a different idea about what "true" is. But for those of you who have been reading my blog for a while, you know that for me, true is Jesus. Truth is looking at my life through a lens of the eternal, knowing that what I do and what happens to me has more to it than just what I can see on the earth.

I had a moment of clarity last week. I went to visit a friend of mine who has a daughter currently suffering from a fatal syndrome. Her body is degenerating. She is in pain. We have been able to have many honest conversations about where God is in the midst of these things and I always walk away from the time with something to think about or be thankful for.

Last week, we were having lunch along with my friend's oldest daughter. We were discussing the purpose of what we suffer and the frustration that comes when people say, "Your situation has taught me..." or "I've learned......from your difficult times." There's a real sense that we all recognize in which you just want to look at them and say in the most sarcastic voice you have, "I'm SO glad that MY horrible life is doing something for YOU." In my humanness, I confess, that is often my response. When I'm having a particularly good day and can think and see clearly, I can look at these kinds of comments and say, "Thank you God for using me." I don't always like it. I don't always understand it. But I've been able to come to the conclusion that says if my life and sufferings, or Lydia's life and sufferings can play a bigger part in bringing people to knowing Jesus, I'll take it.

Again, I keep this perspective as often as I can. There may very well be a time you come up to me and tell me that and I'll say, "That's great and all but can you learn from something else and I get my baby back? Thanks."

We spent a while talking about that and later went to the living room so my friend could sit and hold her daughter who was in so much pain that putting her down was out of the question. As we sat quietly together, she looked at me and said the words that I said in my heart and with my mouth so many times as I watched Lydia seize, "I cannot stand that God allows her to suffer like this."

It's so difficult to reconcile this thing to God's goodness. The allowance of pain in general is difficult. I am much more ready to accept my own suffering than to watch my child suffer in a way I can't understand - I think that would be true of any mother. I can take God using the situation to teach people. I can accept that death is coming. But I cannot accept the suffering. The question "How can You do this?" was often on my lips. How can He make my child suffer in this way and make me watch as she does?

I don't remember exactly when the answer was whispered softly to my heart, but I remember the realization clearly.

He let His only child suffer. He watched as His only Son died. Yes, He knew the plan. Yes, He knew what the end goal would be. But I know it didn't hurt Him any less. He knew the pain of being separated from His child. And He allowed Himself to know that pain for me.

Of all the hurt that God has ever known, I always forget that He has known this one more deeply than I can understand. He knows, HE KNOWS how I feel. And no, it doesn't make me hurt any less because He knows how I feel but, oh, the comfort it brings me to know that He understands my broken heart.

He knows how it feels to watch the child that you love beyond words struggle to breathe. He knows how it feels to watch as that child takes it's last breath. He understands the deep pain of separation.

It doesn't fix it. But it changes something in me. I'm not desperately clinging to a God who has never experienced the death of a child. He knows. When no else can understand the groaning in my heart, He knows. And just as God always knew what Jesus' life and death was destined to do and so willingly sent His son to willingly die for me, so I can stand and say, with a little more courage each time, that I know the life and death of my child means more than just her life and her death. Obviously, Lydia is not Jesus, nor will her life and death ever, ever mean what His did. But if God could send His son (His SON, people. A perfect, perfect being) to suffer and die to bring life to the world, what excuse do I have to want to hold Lydia back and say, "No. You can't use her life and death for something else"?

Please, please don't think that I'm saying this out of an attempt for mock holiness or spirituality. I wrestle with this. I fight with God. I yell. I curse. I am indignant. HOW DARE HE?! And I don't understand. Even as I try so feebly to put all of these thoughts to words, I still don't really understand them all, nor do I like them.

But I know the truth. I KNOW THE TRUTH. And the truth is, my life, my death, your life, your death, Lydia's life, Lydia's death, Jesus' life and His death - it's all to point people to God. And if God wouldn't hold on to His own Son and would choose to watch Him suffer and die so that others could know Him, what argument do I really have?

That is one moment of clarity. Talk to me tomorrow and I'll say something completely the opposite of all of that.

One

Yesterday marked one month since Lydia went to heaven. One month. It seems strange to me now that I'll be marking time, not by how long she's with us, but by how long it's been since she left.

I haven't really felt too much like writing. I've been attempting to distract myself during the days by reading and visiting with people. It's too much to deal with every day if there's nothing to fill the days. I think that's why the nights are so hard - there's nothing to fill them. When it's dark and I have nothing to do but wait for the ease and comfort of sleep, I feel doubt and uncertainty begin to creep slowly into my mind and heart.

A couple nights ago I couldn't fall asleep. I got out of bed and as I rounded the corner into the living room the picture of Lydia that hangs on the wall caught me off guard. All of a sudden I couldn't breathe. In that moment, I couldn't remember what it sounded like when she cried or when she breathed or anything about her being alive. I sat down quickly, opened my laptop and watched a video I had taken of her. I cried. As I cried, my mind started to race. I kept thinking of all the things I did while Lydia was alive that took me away from her. How could I have ever left the house when she was still breathing? How could I have put dishes away or vacuumed the floor? How could I have done laundry or made dinner when she was still here, feet away from me? How could I have wasted all of that time? I should have been with her, every moment of every day that she drew breath. I knew the time would be short and I wasted it.

I know. I know. It's not true. I had to shower, keep things going, lead as normal a life as I could. I would have gone crazy and been incapable of caring for her the way I needed to if I never slept or left the house. I know those things are true. But it doesn't stop me from feeling that way. I know that even if I had done all of those things, I'd still be in the same place because no matter what I did or didn't do, there would never have been enough time with her. Eight months is not long enough for a mama to hold her daughter.

Everything feels empty now, but I know God is in my emptiness. I catch glimpses of Him as He works to make me whole again, just as He has made Lydia whole. I praise Him that at the end of all my irrational fears, when the tears have subsided and I've stopped yelling at Him long enough that I can hear Him speak the truth to me, at the end I'm OK. I'm weak. I'm broken. But I'm OK.

Slide show

We've run away for the week, up to a quiet, coastal cottage in Maine. It's been a much needed escape. I'm not sure what the next weeks will hold for me without my girl, let alone what this blog will be without her. I'll let you know when I do.

Until then, here's the slide-show I made for the reception after her memorial service. It's long, but the songs are worth listening to, even if you don't watch the whole thing.

8 Months, 8 Days

Dear Lydia,

It’s almost impossible for me to write this letter to you - I don’t want to imagine you concerned with things of this broken world anymore. I wish there was any other way for me to do this, but since I still live on the earth, these words are all I have.

These past few days have been awful. Empty. Quiet. For such a small little girl, you leave a big hole. I’ve wished in my heart a million times for you to come back to us. But for all I would take you back in a second, I’m so thankful that you are now in your true home. I hope you know now how deeply we loved you while you were with us.

I did my best while you were with us to tell you that you were the answer to the most fervent prayers I have ever prayed. Before you existed, we prayed and prayed for God to give us a baby. But not just any baby. We wanted the baby that He wanted us to have. Whoever it was He needed to be born to the world to fulfill His perfect will, no matter how long we had to wait, no matter the struggle, that was the baby we wanted.

And He gave us you.

You were not what we expected. Nothing about the situation, about your sickness seemed right to us. But you. YOU were right. God knew you were right for us.

It wasn’t an easy road He asked the three of us to walk. I’ll never completely understand what exactly it is God was doing through all of this. But as hard as it was for us, I know it was worse for you, trapped in that broken but beautiful little body. But every time your tiny hand curled around my finger, every time you yawned your sweet baby yawn, every time I smooshed your cheek up against my lips made every other horrible moment worth it.

Our hearts are broken without you here. But we have hope in the prospect of seeing you again in heaven. I cannot wait until the day when we can stand together as a family, hand in hand and worship at the throne of our Savior.

Until then, know that we love you more than we ever thought possible and every time we speak of you it will be with pride and thankfulness for the great gift you were.


Love,

Mama

Saturday

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 www.support.kennedykrieger.org/lydia 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.

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.

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.

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.

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.

Mama

(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 plié skills.

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

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.