Tuesday, March 30, 2010

Spring is Happening

And spring in our house, means garden. Micah is a farmer at heart and for the first time last year planted a vegetable garden. This year, after the success of last year's garden, Micah has double the size of the garden and wanted to plant seeds inside to get them started.

Today, after decompressing from work, he started getting things ready to plant the seeds. His final step was to take Lydia into the little alcove and roll up her sleeves.

He set some seeds into some soil and got close in next to Lydia, picked up her hand, and used her tiny baby fingers to smoosh the seeds into the soil.

It was maybe the cutest thing I've ever seen. This will always be a sweet memory for me, watching Micah sharing something he loves with his girl.

She has farmer's hands...tiny ones.

Monday, March 29, 2010


This weekend, we met David and Nancy Guthrie - the first people we’ve encountered in real life who have walked this road, first with their daughter Hope, then with their son Gabriel. Nancy did an incredible job speaking at the seminar on Saturday. Lydia and I snuggled in a comfy chair in the basement nursery and watched on a TV screen as Nancy recounted the days of Hope’s life and the many things she learned and has learned since then. I cried.

There were a lot of things that I learned and realized this weekend and I’m sure in the days to come as I process them more, you’ll hear all about them. But seeing Nancy, alive after what has happened and not just living but thriving and ministering, I came to a realization.

I can do this.

My heart will crack open from the loss of my sweet girl. But I can do this.

I will feel empty, hollow, purposeless. But I can do this.

There is a valley coming that I cannot see the bottom of and a darkness through which I cannot yet see the light. But I can do this.

There is pain more real than any I’ve known and at times it will feel easier to let go of my own life because it is too much to bear. But I can do this.

And I won’t have to do it alone, for I know that my Redeemer lives.

Wednesday, March 24, 2010

Nancy Guthrie Seminar

I just wanted to remind all of you readers out there who live in the Fairfield County area that Nancy Guthrie will be coming and doing a seminar this weekend at Trinity Baptist Church in Fairfield. The seminar is called "Holding on to Hope." This video is Nancy telling you what the day will be about. All of the info for where and when and who to contact is on a slide at the very end of the video.

I had four different things typed out here to try and say something about why you should consider coming this Saturday. But it all just sounds contrived. All I really want to say is, suffering sucks and I know people don't like to talk about it. But I hope you'll be brave enough to come and talk about yours and maybe learn something about how God is good in the midst of our suffering.

PS - Sorry. I don't know why the video always loads so off center on my blog. The e-mail address is GuthrieSeminar@yahoo.com. Shoot me an e-mail if you have any other questions!

Friday, March 19, 2010

Seven Months

Sweet Baby Girl,

Today marks seven months since the day you were born. Thirty weeks. 212 days. 5,088 hours. Each hour, day, week, month - it’s more than we thought we would have. Though the days and weeks have been getting harder, every night when we tuck you into your crib, after Puppy and Froggy give you kisses, Papa and I pray to Jesus and thank Him for another day with you.

This month has seen the return of warm weather and the spring sun. When it was still too cold outside for you, I put you on the bed in the spare room so you could nap in the sunshine. Now it’s finally warm enough that we can snuggle out on the back deck or take a walk in the park. The other day we sat on the deck and I sang you all the songs I could think of that had the word “sunshine” in them.

You had your first cold and ear infection. I was worried because you had a fever and fevers can make you have more seizures. But I got to do normal mama things for you, like take a cool cloth and put it on your forehead and neck to cool you down, and snuggle you close all day long.

This month has been really hard for mama. I’ve had to tell you I’m sorry many times as I’ve held you and just cried and cried. I don’t want your life to be defined by sorrow, nor do I want my memories of our time together to be predominantly sorrowful. But some days, when the love I have for you pushes me to acknowledge the loss I’m facing, there’s nothing else I can do but cry for you - for all that you won’t have and for all that I won’t have.

But, my sweet baby, we have so much. We’ve had seven months. Thirty weeks. 212 days. I’ve had your tiny hand to hold and your soft, chubby cheek to stroke as I sing you songs. We’ve had bedtimes and bathtimes. We’ve had more than I could have imagined after our meeting with the geneticists who told us your life would be short.

We don’t know how aware you are anymore. It seems like any time you’re not asleep, you’re having seizures or getting ready to. We keep talking to you, keep playing the praise DVD I caught you watching the other day, keep reading you books. And I keep telling you how much I want you to stay, stay, stay, but that when you get too tired, it’s okay to go.

Today on your birthday you’re going to be surrounded by lots of people who love you. We’ll take walks, have snuggles, and relax with our family. It’s going to be a good day.

Happy Birthday, sugar pie. I love you so.


Tuesday, March 16, 2010

For your viewing enjoyment...

Here are some pictures from the past few days.

Bathtime, Rubber Ducky, Naked Baby Leg.

This one's cute, right? I'm pretty sure she was just starting to have a seizure and that's
why she's so wide awake.

Pretty purple dress from Target! AND today was the first day in a lot of days that there was any sunshine! So, Lydia had a nap as the sunshine came in through the window.

This frog blanket was the very first stuffed animal that Lydia was
ever given from my good friend Kim and her daughter Katherine.It has lived in her crib
since before she did and she's been snuggling him a lot lately.

Sunday, March 14, 2010

Prayer Requests

The seizures - oh, the seizures.

In pretty much all of her awake time, Lydia is seizing. Interestingly enough, the one time this week she woke up and wasn't seizing was when I put on a Praise Baby DVD that a kind friend (who I've never met, but I count her a friend!) sent Lydia in the mail. Let me tell you, people. It was incredible to watch her open her eyes and stare up at the images of bright colors and shapes and listen to the praise music. You can call it a fluke if you want, but I believe so strongly that her spirit understands so much more than her brain can comprehend.

Other than that, she seizes all the time. We've been giving her Atavan multiple times a day and that knocks her out. It's hard. We don't see "her" very often anymore...the little bits of her personality we cling to...we don't see it when she's medicated. Or when she seizes.

It's so strange. I feel like she's slipping away and I know the time is probably short and I know what the prognosis is. But I still, despite the intense reality of it all, can't help thinking that one day I'm just going to go into her room to get her out of her crib and she's going to be different - better.

I know you prayer warriors are out there, constantly lifting us to the Lord. Would you please pray for mercy for our girl? It all seems too much for her poor little body to take.

Also, I think I'm getting sick. I've been healthy since Lydia was born, which is a miracle in itself. But I feel that weird swollen throat thing coming on. It doesn't bother me so much for myself if I'm sick, I don't want to get Lydia sick, especially after she's just gotten better. If you would please pray that the sickness would stay away, I would be so grateful. I don't want to waste time being sick.

It's hard to take pictures since she's awake so little and seizes so often. Hopefully I'll have some pictures for you soon instead of these boo-hooing type posts. Thanks for reading and for praying for our family.

Wednesday, March 10, 2010

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!

Monday, March 8, 2010

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.

Tuesday, March 2, 2010

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.