So, It's Not All Bad

Contrary to the tirade I just recently posted, even though the days are tough, there are so many beautiful moments in each day we have with our girl. Here are some from the past couple of days.

Snuggles with Aunt Allison who came to visit this weekend!

Lydia and Grandpa Huff had a nice chat.

Then, there's this awesome lady-bug hat that makes me smile every time.

Praise Jesus for beautiful weather these past couple of days! Even though our grass is like needles until it greens back up, Lydia had a nice time napping in the warm sun.

Clearly, she is bored by all the paparazzi.

Yesterday we took a walk with two of my oldest friends and their kids. We spent some fun time playing in the park. Lydia (of course) slept through the whole thing!

This is Sarah with her youngest, Evangeline.

And Emily and her little guy, Jack (who just before this
was having his face wiped off from all the dirt he kept eating).

This is Sarah's older daughter, Adlien. She loved watching the water drift under the bridge and said, "I just want to lay here and watch the water all day..."

And Lydia did some off-roading in her stroller.

The seizures are still pretty bad. We've spoken with the neurologist and will be changing her med levels starting tonight. I'll keep you posted. Thanks for all of the encouragement in the form of comments and e-mails and for all of the prayers!

In Which I Do a Little Yelling

I wrote this post yesterday, which was a crazy mish-mosh of awful and great. Here's the awful. I'll post pictures of the great later. I couldn't decide if I wanted to post this, but I know there are women out there who are feeling the same about their sweet babies who are watching their babies suffer and I just want you to know you're not alone.

I'm angry today. I don't get angry often, but today I'm angry. Even less rare than my anger is the kind of anger that causes me to have "words" with God. Today, while I was home alone and Lydia was having a horrible time, I had words with God. The kind of words that I say through gritted teeth and choked back sobs, because I can handle a lot. I can handle that He's going to take her away from us and that maybe I'll never have another baby of my own.

But every now and then, I snap. Because I cannot handle seeing my sweet, sweet girl suffering the way she is.

I held her today as she writhed under the seizures and cried and cried...out of fear? Pain? I don't even know why my baby is crying and there's nothing, nothing, I can do to make it better for her. Knowing that eventually, in His time, He's going to take my girl to be with Him, I looked up at the ceiling and blurted out, "HOW LONG ARE YOU GOING TO MAKE HER DO THIS?!"

I hesitate to even write this, because there are several women I know who read this blog who have lost their babies. This huge part of me feels like being angry now while Lydia is seizing uncontrollably in my arms and screaming until she's purple isn't fair. Because at least I get to hold her. But for all that I know that it will hurt to keep breathing when she's gone, I want peace for her. And wholeness. And I want them now, while she's here with me.

But more than I want those things for her on earth, I simply want them. I want her to be peaceful and I want her to be whole. I know that saying this will sound like me saying I'm ready for her to die. That just isn't true. I'm ready for her pain to stop.

Sunny Day Photo Shoot

Today, Lydia and I had a photo-shoot. The sun was so bright coming through the windows, and Lydia was so awake (and seizure free) for a while, I couldn't resist. I laid the quilt that we designed her nursery around down on the bed in the spare room and opened up the blinds to let the sun light in.

We had some cannula free photos...





Then we put the cannula back on for more effective breathing times. I was amazed at this picture - she was looking right at me.




We held hands for a little while...


And then, she started to get a little sleepy.



She fell asleep in the sun and slept off and on all afternoon. When she was awake, she just stared up at the sky, content as can be. I think she enjoyed the change of scenery.

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.