Wednesday, August 28, 2013

Today

Written 8/27/13

Today's the day.

It's the day I've been dreading.

CF became real.

I think that moment happens with every diagnosis, if we're being honest. After the overwhelming emotions and the processing of what you were just told subsides, you get past the "numb" phase and then it hits you... for real.

I remember when it happened with Ben. It was the day we started therapy. We had just moved to Florida and Jan was assigned to my little guy. She was completely wonderful, but I balled like a baby after the initial meeting. Down syndrome became real. Ben was officially different and the diagnosis took precedence for a minute.

Alexis started enzymes today. They're going to be an essential part of our daily routine and something that she will likely take for the rest of her life. Right now, she has them (mixed with applesauce) before every feeding. Just one little capsule of yeast-looking pellets that allow her to absorb fats and vitamins that she may not be getting.

As grateful as I am for how far CF treatments have come over the years, the crippling fact remains that there is no cure.

And today? Today that's real. And it sucks.

I will say this...

I've never been more aware of my need for Jesus. And I've never been more aware of the little things. Good is there. She's got a really, really good hiding place right now, but she's there.

And I've had this song on repeat for a good 24 hours. This is my deepest... and toughest desire. One day I won't cry when I hear it. But not today.



Saturday, August 24, 2013

Survive

After hearing a lot of things this week, I realize I need to answer some questions and clear some things up. Nobody knows exactly what to say when they talk to me. I get that. But here's the thing...

1. "Your faith is amazing." False. I just love Jesus.
2. "You're the strongest woman I know." False. I'm probably the weakest woman you know; I just know a strong God.
3. "God knows what He's doing." You're right. But that doesn't make it easier.
4. "Miracles happen everyday." True. But that doesn't mean healing Alexis' little body is the miracle we'll get.
5. "I'm here for you." Thank you. That's all I need.

I'd love to tell you this is going to be easy. After our 3 hour, 6 person Dr. visit in Dallas, "easy" is not the word I would use to describe this disease. CF affects the lungs, the pancreas and the intestines. The short version is that mucus builds up where it shouldn't and, without proper care, could build up so much that said organs can't function. It's all a "wait and see" game for the first year. So far, Alexis' lungs sound good so we are focusing on the pancreas. She will start taking enzymes before every feeding in an effort to help her absorb much needed fats and vitamins. Those along with a multivitamin and salt regimen (1/8 tsp of table salt in her bottle everyday) should keep things running the way they were intended. 

I wish I could tell you that I've got this, but I'm overwhelmed in every way imaginable. I'm overwhelmed with information and trying to figure out how to be mom while remembering to be wife and friend and everything else I need to be.

I'm overwhelmed with gratitude for friends that decided to start a donation page for our family. Since then, I'm happy to tell you that we've qualified for state funded insurance, so that prayer has been answered in a big way. The trips to Dallas and the "keeping our heads above water" right now are still there, so thank you to those who have donated already. Knowing we won't be going through the financial burden of this alone is huge.

Lots of you have asked me how we're doing.

The truth?

We are in survival mode. We are literally taking life one day at a time, never knowing what the next will bring. One day we'll get to the "living" stage and survival mode will be a thing of the past. We'll be used to this newest normal and we'll be able to smile more than we cry. But right now? We survive.

I do feel blessed. I know God doesn't give babies like ours to just anybody, so I feel blessed that He saw fit to give me two. That doesn't mean that I'm not dealing with the emotions that go along with a CF diagnosis and that doesn't mean that I'm going to feel awesome everyday. But if there's one thing I've learned over the last few years, it's that God's cool with emotions and the "I'm not okay" days. In fact, He specializes in them because those are the days I need Him most.

So, thank you for loving us. Thank you for praying for us. Thank you for sharing our story.

Thank you for surviving with us.




Friday, August 16, 2013

Hope

Written 8/9/13

"I just want a healthy baby." When asked if they want a boy or a girl, that's most likely what new parents will tell you. It's commendable. It's true. 

But what do you do when that doesn't happen?

At this very moment, Alexis is laying on my chest. Her dark, wispy curls are tickling my nose. She smells like Johnson & Johnson goodness and she's just recently found out her fingers are good for sucking. She has no idea.

My heart aches. My body hurts. My eyes are swollen. I've cried for 48 hours.

Benjamin's secret was easier than this one. He's different, yes, but he's healthy.

Alexis is sick.

Alexis has cystic fibrosis.

There is no cure. Those are the words I can't stop repeating in my mind.

Down syndrome was easy. Ben will be different. He'll struggle with things that most people don't.

Knowing Alexis has a disease that will eventually take her life?

Oh God, it's completely unbearable.

So what do you do when your commendable wish for a healthy baby doesn't come true? Well, your prayer life improves. And you cry. You cry more tears than you thought you had. And you do what we've always done - take it one day; sometimes one moment at a time.

A lot of you will read this in disbelief. It probably seems like our family has walked through things that don't make sense. Don't worry; it doesn't make sense to us either. Some of you will blame God. That's okay. Some of you might be angry on our behalf. That's okay; I'm angry, too. None of you will know what to say. That's okay; don't say anything.

Just be there. Cry with us. Pray for us. Don't leave us alone. Be our village.

Jesus loves my babies far more than I do. I have to believe that. I have to hold on to the truth even when I don't want to. I have to trust that He knows what He's doing. I have to pray for a miracle while still understanding that the miracle I want may not be the miracle He gives me.

I want to know she'll outlive her parents. I want to know she'll be there for her brother.

I want to keep her, dammit.

This doesn't seem fair, does it? That's okay. It's not.

But...

God is still God. God is still good.

Where there is fear, there is faith. Where there is heartache... there is hope.


Friday, August 2, 2013

Attitude

She had hands that felt like marshmallows and a Texas drawl that put all others to shame. Ms. Nancy was my first experience with School for Little Children in the Spring of 2005 and she taught me a very valuable lesson: Slow down. As soon as those rambunctious three year olds entered her classroom, it was as if they were all put under a spell. They were calm. I knew from that first afternoon that I was not in Kansas (or Florida) anymore. Life was viewed differently here and I best strap on my spurs and... slow down. I never heard Ms. Nancy raise her voice to those children and she was never in a hurry to get anywhere. She let the kids be kids. We played all afternoon with a few structured activities thrown in for good measure. She taught me the value of staying calm in stressful situations and the importance of taking it easy. I may forget her name someday, but I won't ever forget her spirit.


The more babies I have, the more I'm realizing the pendulum swing between joy and desperation. I'm sure I'm all alone in this, but the first few weeks of getting to know a new baby can throw you for a loop. I have two healthy, beautiful children and I know what a blessing that is, but there are still those moments of, "I love my kids... but." It's an attitude I'm working on and, truth be told, Ben is shining some light on the subject.
Dude loves his sister: seen especially when she's not a happy camper. His whole world comes to a crashing halt when she's crying. He brings blankets, pacifiers, diapers; anything nearby that he thinks would make Sister smile again. When those things don't do the trick, he just lays his head on her chest. It's his way of "giving her a kiss" and trying to make it all okay again. Just like Ms. Nancy and her three year olds, you never see him annoyed or frustrated with the situation. There's none of this, "I love her but..." There's just love. That's all.


If I'm being honest, I've had moments of desperation. Both kids needing me at the same time and not knowing how to help either one. Crying, praying and trying to get my hormonal emotions out of the way so I can think logically. "I love my kids, but I don't know what to do."
Being a mom is hard sometimes. Those moments of joy can sometimes get clouded by the moments desperation and we can easily forget why God says these little lives are precious gifts.
It's all about the attitude. Even if you don't have kids, it's easy to forget that life is good, isn't it? When something goes wrong or doesn't turn out the way you always thought it would, it's easy to forget how to slow down and be thankful. "I love my ________ but..."

Oh... And aren't you glad God doesn't say that? I am.

Moral of the story: stop and smell the salt water today. 
Or if roses are more your speed, sniff away. Just stop.