Of Colds and Ear-Aches and a Few Awesome Things

Lydia has had a cold and an ear infection this past week. She had a pretty good fever going at the beginning of the week, but we went to the doctor's office and The World's Most Awesome Pediatrician checked her our and laughed with us when we were excited that she had a normal baby sickness. It's nice to treat a not-normal baby like she's normal.

Lydia spent most of her week in a mostly zonked out state, and when she would wake up, this is what she looked like:


Miserable, right? But we've had some really good snuggle times and some beautifully normal moments. When her fever was high, I worried like a normal mom and put a cool cloth on her forehead and neck to settle her down. Even sick, she's maybe the sweetest thing I've ever seen.


I've been wanting to share for a long time some of the very wonderful things that have been given to us over the past six months. We have been blessed with some truly gifted and thoughtful friends. I couldn't possible put everything in one post, but as I think of it, I want to share some of these lovely things with you all. Here are a few of my favorites to start.

This little statue is called "Guardian."

It was given to me by my good friends Lorna and Olivia. It sits on the corner of my piano, where I walk by it several times every day. I love this little statue for a variety of reasons, not the least of which is that it reminds me of how I hold Lydia. I hold her high up on my shoulder, on her side, and snuggle our faces together. When she has seizures, I cradle her head in my hand to make sure she doesn't shake too violently. I love the name too - it reminds me that although ultimately it is our Father in heaven who watches and protects her, for the time she's on earth, we are her guardians. Every moment, I'm so thankful for that.

This next one was a wonderful surprise. We received this beautiful water-color portrait called "Lydia's Christmas" from Cady. It happens to be my favorite picture of all of Lydia's Christmas pictures. We got it framed and it now hangs in our living room and will, inevitably, hang in all of our living rooms from now until forever. What an incredible blessing.

Here's a close up of the amazing detail, down to her polka-dot blanket!

Remember all those pictures of that other really cute baby, Molly? Well, Molly's mom Megan is one of the most talented people I have EVER met. She does beautiful portraits. We already had one of our wedding day that Megan made for us in our room. When she and Molly came to visit, she brought this beautiful portrait of our girl with her.


She also wrote a heart-breakingly beautiful poem that sits opposite the portrait. Whenever I show it to anyone, I say, "Only read it if you want to cry." So, I say the same thing to you. Read at your own risk.

It's an acrostic of Lydia's name.

Little girl with polka-dot dresses,
You teach us daily by
Doing what the Savior asks of you;
In words from your Mama's pen, you give us
A deeper understanding of who God is.

Every instant is a gift
In all the ups and downs,
Leaning on a Creator Who knows
Everything you are,
Everything you will be, Who
Never questions His handiwork or timing.

Through deep, dark valleys,
High hills and wilderness,
Onward we travel this journey with you,
Mighty Comforter guiding each step.
Precious, precious little one-
Someday you will see how
Others know Love like they
Never thought they could because you are here.

Thanks, friends!

Nancy Guthrie

Through a series of pretty amazing events, I had the absolute blessing of coming into contact with Nancy Guthrie. I received one of her books randomly in the mail from a former student's mother. She had begun to read the intro to the devotional and learned that Nancy had two babies who suffered from Zellweger Syndrome, the same thing Lydia has. A few days after I got the book, we brought Lydia home from the hospital and Nancy (having been contacted by someone we know) commented on our blog.

After several weeks of having Lydia home and after one particularly difficult week, I finally got up the nerve to call her. She was going to be the first woman I spoke to who had lost a baby to ZS and I was excited and nervous for what she would say. It was an incredible phone call. She told me about her sweet babies, Hope and Gabriel and how she dealt with their lives, how she went on everyday knowing they would die, how she dealt with friends who had babies the same age as hers.

She told me that how I grieve when Lydia goes to be with Jesus is a choice I get to make. I could allow myself to feel connected to her only through my grief, or I could choose to celebrate life to honor her memory.

She told me that losing Lydia will be the most painful thing I will ever experience and will hurt me more deeply than anything ever has. But it will not hurt that bad forever.

She told me that the miracle of this story isn't going to be that God heals Lydia. The miracle is that, after she is gone, He will heal me.

She gave me so much to think about, but more importantly, she gave me hope that when Lydia goes to heaven, it will not be the end of my life.

Since talking to her, I've read two of her books (Hearing Jesus Speak Into Your Sorrow and Holding On To Hope), which I would recommend to anyone who is dealing with some kind of suffering in their life.

Knowing that many people in our community are going through significantly difficult times and suffering through things they do not understand, our bishop then reached out to Nancy to see if she would be interested in coming and speaking in Connecticut. Excitingly enough, she said YES!

Here is a video of Nancy explaining what the seminar will be all about. At the end of the clip, there is a slide with all of the info that you need, should you want to attend. Hope you'll consider it. The time is being covered in prayer and we are trust that God will bless the time.

The Utter Ridiculousness

Lydia has a cold. It's the kind of cold where your nose isn't exactly stuffed up but back behind your nose is. We keep trying to suction her nose, then her throat, then her nose, then her throat and she's still so congested. I took her temperature tonight and she had a fever. What did we do? We packed a bag so if we ended up having to go to the hospital, we wouldn't have to worry about it in the middle of the night. Also, I drove to my mother's house to get a humidifier to help get the gross out of her head.

On the way there, I called Monica, our good friend and a nurse at the pediatrician's office. "I just need you to tell me not to panic," is what I said to her. In my head, I recognize that it's probably nothing - just a cold. But with Lydia, you can never tell. She told me it sounded like a cold, that the humidifier was a good idea, the Tylenol we gave was a good idea and I should calm the heck down.

I find it ridiculous because shrieking seizures, I can handle. Baby stopped breathing? Under control. But a FEVER?! WHAT DO I DO ABOUT A FEVER?!

My life is nuts.

Meanwhile, I have derived a strange pleasure in taking care of my baby through this little cold. I have her all propped up in her bed, socks on her feet (over her jammies) to keep her toes extra warm, humidifier on. I took her temp a while a go and it's come down a good amount and she's breathing a ton better. I can't make all of her better, but I can take care of her if she has a cold.

I just went into check on her and felt her forehead with relief when it seemed cooler. I stroked her cheek and kissed her and said a prayer of thanks for this incredibly normal feeling moment.

That said, we'd still love for her not to be sick. Please pray that the cold and fever would pass and not turn into any kind of infection that could cause more problems.

BIRTHDAY PARTY

Last night, we had a shin-dig for Lydia's six month birthday and people, be proud of me. I only cried once because I thought the cupcakes came out badly and I forgot to bring things to put the cookies on. But my dad went and got them, and the cupcakes weren't too bad.

Lydia did great during the party. She slept almost the entire time and only had one or two little seizures until the end of her party when she had a bunch and did a lot of screaming. Thankfully, most people had left by then.

It was an amazing night and we had so much fun. Thanks to everyone who came. It meant so much to us to have our girl surrounded by people who love her, even though she slept through everything. It was a wonderful celebration of her life and made me happier than I can say.

Here are some pictures!

Lorna bought this princess hat for the birthday girl!

Aunt Amy got this beautiful birthday sign!

Her party outfit was beautiful and pink (of course!)

We made birthday cookies in the shape of flowers and butterflies. Thanks to Lisa and Fran for helping decorate!

This was my favorite cookie.

Lydia's Great-Aunt Carol got to meet Lydia and hold her for the first time! We were so happy she could come from Florida for the party!

Lydia had lots of friend who were excited to see her! Linnea and her sisters Lexi and Lillian came, and Linnea and Lexi made her beautiful birthday cards!

Adlien and her sister Evangeline came, and Adlien sang Lydia "Feliz Cumpleanos" from Dora!

And we took some silly birthday pictures.

These were the cupcakes. I don't really want to talk about them, but people said they tasted good.

Lydia got some fun/creepy looking balloons from Aunt Amy and a few other very lovely gifts, including her very first Barbie! I loved seeing her crib full of cards and flowers and happy things.

We asked people not to bring gifts for Lydia, although some people broke the rules (which was awesome).

Instead, we asked people to bring books to donate to the organization called Brady's Smile They provide comfort bags (full of books, snacks, etc) for families in the NICU's or PICU's all around CT, NY, NJ, MA, VA and PA. They are also working to start a children's library in a local hospital.

Thank you so much to everyone who brought books (many multiple books!) to help make families in unfortunate situations feel a little more normal by reading books to their kids. If you're interested in donating books, other items, or money to this wonderful organization, check out their website for info.

Yesterday was a day to be thankful for. A day to praise God for. We give Him all the glory for this most wonderful of days.

Six Months

Dear Lydia,

SIX MONTHS! I am amazed, thankful, bewildered and a little fearful as we celebrate this milestone with you. I was looking back through your pictures and am amazed that despite the fact you’ll never grow up like a normal baby, you have come so far in your own way.

This was the very first picture I took of you.


You were so little and so sick and we were so scared. We had a million questions that had no answers. We heard best case scenarios and worst case scenarios and everything seemed like losing, no matter how we looked at it. We waited and waited to bring you home so we could be a family, and when it finally happened, we thought we had weeks together at the most.

This picture was taken just a couple days after we brought you home, at your baptism.


We felt like you were hanging on by only one of your tiny little toes. We held our breath every time you stopped breathing, ready at any moment to say goodbye to you should Jesus come to take you to heaven.

But our fear turned cautiously to hope that you might stay with us a little longer as every day you grew stronger and stronger.

We’ve been able to do so many more things with you than we thought we would do.

We have come up with a so many (somewhat absurd) nicknames for you: Peanut, Punkin’, Punkin’ Pie, Punkin’ Pie Face, Bug, Bug-a-boo, Smoochy, Smooch, Smudgy, Smudge, Smudge Face...yep, all really original too. We rarely call you by your actual name.

We’ve gotten to snuggle you for hours on end. We’ve given you thousands of kisses. We’ve read tons of books and sung hundreds of songs. We’ve taken walks in the park on beautiful fall days. We’ve had play dates. We’ve gone to Maine.

I wish that I could say doing all of these things make me feel like I’ve done enough to be OK never doing them again. But every time I hold you, every time I sing you a song, every time I kiss your jawline right below your ear, all I want is to be able to do it a million more times, every day forever.

But I don’t want you ever to think that it hasn’t been enough. All that you are, all you have been is more than I ever imagined when we first learned how sick you really were. Every time you look in my eyes with those heart-stopping blue eyes, every time you make your funny laughing face when I tickle you, every time you fall asleep and drool all over my shirt is one more time than I thought I would get.

So, today on your birthday I’m going to try to remember that. I promise you that I’ll do my very best not to cry because I want this day to be a celebration of all we never thought we would have.



You’ve come so far, and I know I say this almost every time I write you a letter, but you’re a miracle, baby. A constant reminder to me of the magnificence of the God who gave you life.

I wish that there were words enough to tell you how much I love you - how much every moment you’ve been alive has meant to me. Just believe me when I tell you that these six months have forever changed my life.

Happy Birthday, my big girl.

I love you so.

Mama

Reader Response

When I was in college I took a class on literary criticism. We were twelve or so students crammed into a tiny room around a conference table. Our professor wrote the book we were studying, all about the many different types of literary criticism that exist. Funnily enough, I can only remember two of them. One was deconstructionism and I'd be hard pressed right now to explain to you what exactly that meant. I wrote a paper on it and explained it to my grandma, so I felt pretty smart.

The other I remember is reader response. This theory says that the meaning we draw from the text changes according to who is doing the reading. Not only can the effect of a text be different from person to person, but it can also change from time to time of encountering the text.

This past week, I've found this to be true of the Bible. Don't get me wrong - I'm not saying that the Bible has changed. But I've been looking into a passage of Scripture now that I was studying a few years ago and, with the experiences that I've had since last studying, have gained a completely new understanding.

Psalm 139 - it's a pretty well known Psalm. In the discipleship group I am a member of, we looked into this text over two years ago. I was in the throes of trying to get pregnant but we had been unsuccessful. I was watching friends of mine all over the place have babies and couldn't understand what God was doing. We looked into Psalms and beginning in verse 13 read,

For You formed my
inward parts;
You wove me in my
mother's womb.
I will give thanks to you,
for I am fearfully and
wonderfully made.
Wonderful are your works,
And my soul knows it very well.
My frame was not hidden from You,
When I was made in the secret,
And skillfully wrought in
the depths of the earth;
Your eyes have seen my unformed substance;
And in your book were written
all the days that were ordained for me,
When as yet there was not one of them.

Our leader, Erilynne, elaborated on the meaning of the Psalm saying that before time began, before any body was formed, before He called into existence life where there was no life, He knew the exact time that was chosen for the person to come into being and exactly what womb should be the one to carry it. Were it any other time or any other womb, it would not be the person God wanted.

This had a profound impact on me as a woman unable at the time to conceive a child. To begin to believe that there was a child that God had ordained for me to carry in my womb, created to be the perfect child not only for me, but for the perfect time in the history of the world, called to do HIS work - it made it harder to question why not me and why not now. This wasn't an easy truth for me to grasp, but it was truth nonetheless and I had to begin to live my life choosing to believe the truth as opposed to feeling sorry for myself (which I still did plenty, trust me).

Flash forward a few years. I'm now facilitating another Bible study, going through the same discipleship program. Last week we did the first half of the lesson on Psalm 139. I was amazed at how differently I read the Psalm and listened to this teaching now, having the child that God has given me. He created Lydia and knew her when there was no life in my womb. He knit her body together. This is a tough one for me to hold onto, because even though I know it's true, to recognize this truth is to accept that He knit her together in this broken way.

This was what He needed her to be. For this time, for His purpose - this is what He needed her to be. That's a hard truth to stomach every day, but it is truth.

That last verse gets me ever time. All of her days were ordained by Him before she had lived one of them. If I have to let her go, I know that even though it will feel like the wrong time in every way, it won't be. And I can argue all I want that it is too soon, but it won't be. Because He knew before He formed her the exact amount of days that He needed her to live to accomplish His purpose. And I know not every day will feel this way and some days I will shake my fist at Him in the pain and anger only a mother who has lost a child can know.

But it won't change the reality that what He created, what He worked, He will carry out to complete His perfect will. It's just the truth.

The Race Continues

Our girl is not doing so great. The past few days, almost every time she wakes up for the majority of time she's awake, she's having seizures. I've debated about whether or not to record her having a seizure so you all can understand exactly what that means, but I think not. Her head flails, her face gets screwed up and her eyes, mouth and tongue twitch, one or both of her legs either pull up or kick straight out. And then, if it's a bad one, she'll scream and scream while she seizes.

In addition to her regular medications, we've also been giving her Atavan, which is a muscle relaxer that hospitals give to kids who have seizures like Lydia's. We're not on a regular regimen with it. We've had it since we first brought her home from the hospital but we haven't had to use it until a couple weeks ago. Then, we gave it to her once and she was fine for several days. Last week, we moved up to giving it to her almost every day and yesterday we had to give it to her twice.

It feels like she's getting worse faster than we can do anything to help her, like we're starting to lose this race. We always knew this was part of the deal, but we've really done OK controlling the seizures up until a couple weeks ago. We want to keep racing against the seizures with meds, and we're speaking to the neurologist today to try to figure out how to adjust her meds, if we can at all.

She's a fighter to rival any I've ever seen, but I just wonder how much longer her little body can stand all it's going through.

I'm sad. I don't know what to even ask you to pray for, but please just pray for our girl. He knows what we need.

But, on the plus side, she's still intensely cute.

Valentines Day

I felted this little valentine for Lydia!


This Love Bug valentine is from Grandma and Grandpa Huff!

Lydia made us a valentine too, with the help of her friend Sarina!

This super-cute outfit is from Grandma and Grandpa Thompson!

Hope you all have a valentine as precious as ours!

Awesomeness

This weekend, three of my girlfriends from college came to visit us! Carissa, Karisa and Megan were my roomates (two for three years, one for two) in college. Carissa visits us often (which we LOVE) but Karisa and Megan I don't get to see as often. Karisa hadn't met Lydia, so I was thrilled she could come. I always appreciate that people want to come and get to know Lydia despite how hard it is. And then, there's Megan.

This is Megan and her sweet baby girl, Molly.


Megan, the bravest person in the world, ventured to CT this weekend to spend some time with me DESPITE the last blog post I wrote. She actually called me on Thursday night and told me she wasn't coming, but I coerced her into it. Mostly by crying.

The thing about Megan is that she's me but living in New Jersey (don't hold that against her). Megan and I have many life similarities. Our moms were born on exactly the same day in exactly the same year. We both went so small, private schools, both became teachers at that same small, private high school and both married boys we loved in high school - a week apart (our friend Karisa got married the same day as Megan. It was insanity).

We both had difficulty getting pregnant. I just couldn't and Megan could get pregnant but had multiple miscarriages. Finally, last winter when I found out I was pregnant, I dreaded picking up the phone to call Megan who was still not pregnant. Of course (because she's awesome) she was so excited for me and put me ease.

Two, maybe three weeks later, Megan called to tell me she was pregnant. This time, the baby lived and Megan carried her to full term. This is us being pregnant and awesome a month before Lydia was born.


Her beautiful girl Molly was born less than a month after Lydia and she is a healthy, happy baby (despite having the crazy eyes).

You can read the whole, quite amazing story of all God did in Megan's life over the course of the past two years on her blog. It's sixteen chapters of awesomeness.

I was really nervous about having Megan and Molly come this weekend. I'd met Molly once before, but it was when Lydia was doing really horribly and I cried and cried and cried when they left. But this time, I had a lot of people praying for me.

I didn't want to hate her or Molly for things they had no control over and I certainly never want to jeopardize my relationship with Megan who understands me a lot better than a lot of people do. She knows so well what it feels like to have the things you want slip through your fingers, and to try to reconcile the goodness of God to the confusion left in your heart.

I want to have a relationship with Molly too. It will be hard, but it will be worth it. When Lydia isn't here anymore, I want to be able to celebrate Molly's life and not hide from it. I really wanted to have pictures of her with Lydia so that when she gets older I can tell her all about my little girl.

So in addition to going to IKEA, watching movies, watching Glee, eating enough junk food to put to shame any high school student, and felting (my new favorite hobby, pictures coming soon) we took pictures of our girls together. In matching pajamas.




It was a quite amazing weekend with lots of people I love.

Thanks girls, for coming and spending time with the insane. I needed it.

In the interest of full disclosure...

Here's what's been happening in my head lately. Lydia will be six months old in sixteen days. DAYS. The norm for ZS babies is six months. I feel like I'm walking around a time-bomb. Every time I look at her, I hold my breath to see if she's breathing. When I go to change her diaper, sometimes my heart starts racing, wondering if it will be full of blood. There are days I feel like I'm losing the ability to live in each day, like we've always been trying to do.

Moreover, I have THIS sickening cycle going on in my head: I'm sad. Sure, I can feel happy and joyful and blessed, but underneath that is sad. Pretty much all the time. And please, for the love, don't tell me that I should be talking to someone or that I need medication. I'm sure both of those things are true. I'm not ready to do either of those things yet. OK - so, I'm sad. I'm ready to stop being sad. I'm ready to start healing. Funny thing about healing though. Apparently, in order to heal from something, it has to actually happen first. In my case, the thing I want to heal from is the death of my daughter. But she's still here. So, but default then, am I wanting her to die so that I can heal? What kind of horrible mother wants their child to die so they can start getting over it?

And then, THEN I start to think about what will actually happen when she dies. I was in bed last night, literally paralyzed by the thought of never being able to hold her in my arms again. I was trying to conceptualize what it will be like to put her down for the very last time, to kiss her for the very last time, to touch her skin for the very last time. And then I think to myself, I don't care what it costs me, how much I have to suffer, how badly I just want to curl up into a ball and die sometimes, PLEASE GOD don't take her away from me yet.

So, ok. Try doing that all day every day for the past week.

Add to that the fact that I'm friends with people (who I LOVE beyond words) who have babies and who are pregnant and have NORMAL lives and can have as many HEALTHY babies as they want. It's enough to want to throw my laptop out the window to keep me from tormenting myself by looking at them with their bellies or their arms full of babies. But I should be happy for everyone, right? Happy they aren't in my shoes? And I am. I'm so happy no one I truly love has to be going through this. But sometimes (I'll just say it for what it is) I'm jealous.

Add to THAT the fact that I just really would love to have another baby. But I don't by any means want to replace the baby that I have now. I just - not to sound arrogant - but I know I can be a good mom. That I AM a good mom. And I know right now it isn't wasted because I am going to LOVE this child that I have until forever. But what's the point of having so much love if you can't give it to someone? But then, how? How can we have another baby? Do we try to have one on our own? Do we adopt? If we adopt, do we adopt from the US or from some third world country? Because I feel like I DESERVE to do whatever is easiest. And I'm trying so hard to want what God wants and I know He doesn't owe me anything, but...CAN'T ONE THING JUST BE EASY?!

Hyperventilating? Yeah? Me too.

Swirl into all of that the knowledge that God loves me in an undeniable, heart-breaking, big kind of way. He SHOWS me this so often in the stupid, day to day shenanigans. For example, as I was sitting here, debating about whether or not to post this, I got an incredible e-mail from my sister's friend's husband's mom about how her mother had a baby girl who died when she was a couple months old. I won't tell you what it said, because nothing I could say could possibly do it justice. It was perfect. Just what I needed to hear.

A reminder that God hears me.

A reminder that I'm not as alone as I feel.

A reminder that there are bigger, more glorious things to come.

A reminder that tomorrow - tomorrow will be better.

I don't feel like talking, so here are some pictures!

I tried for about two hours to upload a video, but blogger doesn't want it to happen. I'll try again in a little while.