Wednesday, January 27, 2010

The Cuteness

This man loves his little girl. And, I think she loves him back.

Monday, January 25, 2010

Everything That Has Breath

I’ve been thinking a lot lately about this verse - “Let everything that has breath praise the LORD” Psalm 150:6. Now, I’m pretty clear on what this means on the practical level. All things living ought to be praising the Lord. And for my part, I mostly understand what that means. All of my life should be lived in worship and praise to the God who created me. When I work, when I sit around, what I do, what I read - everything should be done with the focus of bringing glory to God. I get that. Do I do it always? No. But I get it.

Here’s what I’ve been thinking about. Lydia has breath. Exactly how is it that she can praise the Lord?

Since before she was born, when we were told by doctors that her brain possibly had a slight defect that could mean nothing or could be problematic for her, we said with confidence, that it didn’t matter what she was like. That God had formed her and knew her before the beginning of time. No matter what, she was exactly what He wanted her to be.

Then she was born, so obviously broken. I know sometimes it’s the tendency of people to say that she is the way she is because we live in a fallen world, and I know that to an extent that’s true. But I cannot attribute her condition to the evil that’s in the world. God knew before the beginning of time who this girl would be. He formed her in my body to be exactly who she is. I have no doubt about that. Seizures, difficulty breathing, broken brain, broken liver - He knew her before she was born.

So, if He created her to be this way, how is it that she can praise the Lord?

I know that to some extent, her ability to praise the Lord comes in how much Micah and I choose to praise the Lord for her. She can’t speak, so the verbal part of praising the Lord has to be done by us. Not really sure why some people get to praise the Lord for more than just themselves, but (most days) I count in an honor to praise Him on her behalf.

But for her - in what ways can she praise the Lord? Could it be that every breath she struggles to take, every time she puts forth effort to move her arms, head or legs, that she is praising the Lord? Could it be that every time her body that He created has a seizure that she is praising the Lord? Could it be that every time that body stops breathing that she is praising the Lord? And could it be that when she takes her final breath on the day that He has already chosen to gather her in His arms - could that be how she is praising Him?

I don’t know. Maybe this is all theologically incorrect, but it kind of makes me feel differently about her suffering. Of course it’s still awful to watch her suffer He’s asked her to praise Him with her body, broken though it may be, how can I help but praise Him with my heart, broken though it may be?

11"You are worthy, our Lord and God,
to receive glory and honor and power,
for you created all things,
and by your will they were created
and have their being."
Revelation 4: 11

Wednesday, January 20, 2010

Five Months

Dear Lydia,

Five months, baby girl. This might have been the hardest month so far. But, as it always seems to happen, the things that are the hardest are also the best. I find that about loving you too - it’s the hardest but the best and easiest thing I’ve ever done. To love you every moment is so easy. It gets hard every day when I realize that my love can’t make you better or even, at times, comfort you.

It’s amazing how despite increasing struggle, we still see more glimpses of your personality. When you haven’t had any seizures for a while, like when I first get you out of bed, you are so alert. I lay you on your side across my chest so you can look up at me and we play. I tickle your belly or blow raspberries on your cheeks and you make your happy face. I think you even try to laugh. Maybe not, but I’m going to say that you do.

You recognize our voices and turn to look for us when we walk into a room and start talking to you. Just yesterday you were in your papa’s arms and he had you in a position where you couldn’t see him. When he would talk, you would roll back your head to look at him. We’re so thankful for this. In one of the first meetings we had with doctors before you were diagnosed they told us that it was likely you would never recognize us. But you do! And every time you do, it’s a celebration.

It’s been such an incredible journey getting to know you, little girl. I’m so thankful that I’ve gotten to understand you and your spirit and personality. When you were still in the hospital and all I really knew about you was what you looked like, it was so hard to think about losing you when I hardly knew you. I know you now. Inside and out. And yes, if Jesus chooses not to heal you, it will make losing you that much harder. But I would never trade knowing what each expression of your face means or what each little sound you make indicates for a little less sorrow. Knowing and loving you, sweet girl, is one of the greatest gifts God has ever given me.

I don’t know what the next month holds for you. Most of the stories we read tell us that six months is when a lot of babies like you go to to be with Jesus. But you, my little bug, are a fighter. You’ve defied all we thought you would ever do. So no matter what happens, your mama and papa are so proud of you. And every, every minute we love you and thank God for your life.

Happy Birthday, Baby.


Birthday cupcake from your papa!

Your friend Kathy brought you this beautiful yellow flower for your birthday!

Saturday, January 16, 2010

I'll tell you something, people. I'm exhausted. I knew being a new mother would be tiring, but I never expected things to be like this.

We had a couple nights this week only waking up once or twice in the middle of the night, but on average, we get up between seven to ten times a night. The seizures (even though she breathes through them) are difficult for her. We're not sure if it's because she knows they're coming or if it's a vocalization of the seizure itself, but she screams while she seizes. Even though she probably can't understand that we're there with her, we hate for her to be alone if she's frightened, so one of us always gets up to sit with her. It's heart-breaking to watch and not be able to help her. If she were a healthy baby, I could pick her up, rock her, feed her, comfort her. But I can't do anything except put my hand on her head or her back, and ask God to make it stop.

So, yeah. We're exhausted. The more exhausted I get, the more I start to feel like I'm unraveling.

On the plus side, our girl is still so sweet and so beautiful. My dad let me borrow his Flip video camera, so I've been non-stop taking little videos of her. Sometimes I just turn it on and record her sleeping so I can remember her sweet little face and the sound of her breathing while she's sleeping.

Here are some for you! She doesn't move a ton anymore, but she smacks her lips when she's hungry and it's possibly the cutest thing I've ever seen. Except for when she yawns. Which hopefully will be coming soon.

Saturday, January 9, 2010


Lately, things have been pretty much normal around here, except for one quick visit to the hospital because Lydia had a fever caused by a possible UTI. Everything is fine now. The fever has gone down and she's on anti-biotics.

Lately, Lydia has still been having seizures regularly. Yesterday she had four or five when she stopped breathing, but we think that's from the fever causing more stress on her body.

Lately Micah and I have been sucked into the phenomenon that is LOST, and therefore I have been incapable of doing anything but thinking of what is that ridiculous smoke monster and WHO ARE THE OTHERS?!

Lately, Lydia has been just as super-cute as usual and has got to spend some time with some very wonderful people.

Here is Lydia with a former student/super awesome person, Carrie.

This is my good friend Sarah. She's been working in a school in Venezuela for the past several months, and we didn't think she'd be home at all for a while. She was able to come home for Christmas, so Lydia got to meet her! She teaches 5-6 year olds and they made cards for Lydia! Those will come soon!

We also had a visit from Micah's sister and brother-in-law. We haven't seen them since Thanksgiving, so it was great to see them. Lydia missed her Aunt Liz and Uncle Scott!

Friday, January 1, 2010

Best Vacation Ever

Happy 2010 everyone! We had a quiet-ish New Year’s celebration at home with Lydia and our friends Carissa and Lisa. We had a great time goofing off and playing Super Mario Brothers on the Wii. Hope your celebrations were full of fun and friends too.

More important (yes, even more important than the new year) is our trip to Maine. Before I tell you all about our trip, let me try to explain why this trip was so important to me.

When my dad was still in high-school, he joined a singing group at Black Rock led by a wonderful man by the name of Roy Williams. Roy became my dad’s mentor and when my dad and mom got married, Roy and his wife Flo became good friends and amazing supporters of my parents. They live on a farm in Maine. There isn’t a year of my life that we didn’t go and spend time with them there. It is like a second home to our family. They live in an old farmhouse and there’s a barn outside where my sisters and I would spend hours playing. Our favorite game was some rendition of “Little House on the Prairie”, especially since they had a working water pump. It is my favorite place in all the world, with two of my favorite people in all the world. Add to that the fact that it was where Micah asked me to be his wife and it’s maybe the perfect place.

Before I was even pregnant, I couldn’t wait to bring our kids there to experience the wonder of it. As Lydia seemed to stabilize, it became a priority for us to get there. In the past five or six years, my family has always gone to visit right after Christmas, so it seemed like the perfect time.

So, we made the decision and started to prepare. On the twenty-sixth, we started to get things packed up. Babies need a lot of stuff and Lydia doubly so, but we actually remembered all of it! We got Lydia snuggled into her new car-bed (so she could be lying down), said a prayer and started the five hour drive.

And wouldn’t you know, she did amazingly! We got all the way there and her oxygen was perfect the whole time! We spent Sunday settling in and visiting with Roy and Flo and generally being jubilant that Lydia was in Maine!

Monday, we went to Two Lights State Park, which is right on the ocean. Normally at the end of December, you don’t want to be going to the ocean, let alone bringing a baby, BUT, it was beautiful and warm. We got Lydia into the Baby Bjorn and took her to hear and see the ocean for the first time! To say I was elated would be an understatement.

We headed to Freeport and went out to lunch. We were going to spend some time shopping at the outlets, but we had been gone a while and thought it would be good to get Lydia back home. We went home and relaxed. That’s the great thing about Maine - lots of relaxing!

On Tuesday, we got to do some shopping and Lydia stayed back on the farm with my mom, sister and Roy and Flo. She got good snuggles all around from lots of people who love her.

And then some from Duncan, Roy and Flo's newfie! He just hopped right up on the couch with her. We think he likes her.

Our last day in Maine was spent walking out on the river and taking pictures of Lydia with Roy and Flo. These two Carissa took and are two of my favorite from the trip.

There you have it. A dream come true for me. As with all things regarding Lydia, it was very bittersweet. When we drove away from the farm there may or may not have been snarfling from me, but what else is new? Even though she can't know it or love it like I do, we were so thankful to have her there and to make memories with her in my favorite place.