Thursday, December 4, 2014

New Beginnings

At present, Burl Ives is belting a Christmas tune, my babies are giggling, I have boxes stacked in every corner, my shelves are bare and my heart is teetering somewhere between ecstatic and terrified. We've been in this place before; this awareness of a new beginning. Over the last few years you've come alongside to witness the hard, the ugly, the raw. Sometimes I read those posts and relive those moments.


I'm not naive enough to think my fence is going to magically become the crisp white one I had picked out. I thought that before and Jesus loved me enough to remind me who built the fence in the first place. I kicked and screamed the whole way through, but I finally got it.

"But those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint." Isaiah 40:31

Mayberry has been our hiding place. We came here looking for peace; something, anything good. In many ways we've been able to rest and wait. It wasn't always easy, but the good far outweighed the hard.

We thought this New Beginning came one way, but were caught off guard with how we've actually been blessed. As we move on from our little Mayberry and venture to our new City, we cautiously look forward to what will come next.

A big part of our splinter ridden, paint splattered, rusty old fence is complete.

Time to start fresh.

Happy December!


Tuesday, November 11, 2014

It's Not About You

We've decided to move to Oregon. After reading Brittany Marnard's story, we immediately thought of Alexis. Our sweet baby girl is terminally ill. Why put her through the pain and suffering of CF? Why even fight it when we know we won't win? So when she's old enough to make her own decisions, we'll already be in a state that allows one of those decisions to be death on her own terms. Death with Dignity.


Does that sound crazy to you? 

Good. It should. 

Several weeks ago, Brittany's story touched some sensitive nerves in our nation. We've decided that suicide is somehow dignified when you're going to die anyway. 

A very dear friend, who was battling cancer at the time, asked me what the hardest part of CF was for me. I told her the idea that we won't win. We can't beat it. The 'delaying of the inevitable' that will forever ring in this Mama's heart. 

I understand the heartache of being terminally ill. When Alexis was first diagnosed with cystic fibrosis, doctor's told us that there was no stopping it. There were treatments we could perform to 'give her as normal a life as possible' but that, ultimately, CF would take her life. 


Death is such an impossible thing to predict. For several years in college, Micah worked at a funeral home. Many times after pickups he would come home and announce, "When it's your time to go, it's your time to go. There's nothing you can do about it." I think we both realized in those moments that our lives are not our own. That when or even how we die is not our decision. 

I mean couldn't we all say, as human beings, that we are terminally ill? After all, nobody is promised tomorrow. Anybody can ultimately say that they want to take their own life because they're going to die anyway. Anybody can say they want to die with "dignity." That doesn't make suicide the right choice. That doesn't make abortion or euthanasia the right choice. Sticking the word "dignity" on the end doesn't make it okay; it just makes it fancy. 

I'm not discounting Brittany's diagnosis here. Having doctor's put a timeline on your life is drastic. What really hurt my heart was seeing the emptiness in her eyes. She had no hope. 

Here's the good part: 

As Christians, we have hope. We have confidence that there is more than just this life, but we have courage to live this life because Jesus already paid the price. Jesus beat death so that we can live! 

Living life is a choice. Sometimes it's not an easy choice to make. I tell people the cards God gave me and I think a lot of them would expect me to just stop living. To give up. "I don't know how you do it" is, by far, the most common phrase I hear. Truth is, though, I don't do it. The courage, the peace, the joy, the reason to keep going is only found in Jesus. My life has nothing to do with me. When we realize that our ultimate goal is to make Jesus famous, life becomes full of purpose regardless of the cards you've got in your hand. We've overcomplicated the gospel so much that Christians are mocked and ridiculed not because what we're saying isn't true, but because we eat our own kind. Who would want to be a part of God's family when the family can't agree? I get it. 

If you are not a part of God's family yet, hear this and only this: 

Jesus died for you. He rose again and He lives so you can. He loves you. He wants to be a part of your life. It's simple. Just talk to Him. He'll prove it. 

Ultimately, our job is not to roll over and wait to die. Our job is to teach others that it's okay to live

Spread love. Radiate joy. Pray hard. Make Jesus famous. 

Because, in the end, it's not about you anyway. 


Happy Veteran's Day. Thank you to those in and out of uniform who fight for our freedom. You are loved today and everyday. 



Monday, October 27, 2014

Dear Mrs. Relf

I read your interview. Maybe I should congratulate you on becoming an internet sensation. Every time I look at social media, I see your face.


I understand the desire to have the perfect family. The soccer games, the parent-teacher conferences, the birthday parties, the white picket fence. Who doesn't want perfectly healthy and able-bodied human beings to pass on those family genes? I commend your wish, I really do.

You said not to judge you. You told people to walk a mile in your shoes...

You probably expect me to be angry. I was at first. You made me cry. You made my blood boil. You made me curse, and you probably don't want to know what I would've done if I had seen you on the street.

You see, Mrs. Relf, I've walked many, many miles in your shoes. Twice, in fact. My shoes switch from Down syndrome to cystic fibrosis throughout the day. They hurt, don't they? Those shoes are uncomfortable and ragged. Maybe not as fancy as you'd like. You'd rather have the sensible but beautiful ones, right?

I'm really sorry you think God gave you the wrong shoes.

I thought that at first, too.

I cried probably like you did 47 years ago when Stephen was born. Professionals told me he would be a burden; that he would never be like his peers. They said they were sorry and I bought it. They said the same thing about my daughter.

You believe you missed out on having an abortion. That, if you had it to do all over again, you would've ended Stephen's life.

The way I see it, Mrs. Relf, you made the same choice with or without the abortion.

For the last 47 years, you've chosen to ignore the beautiful aspects of Stephen.You labeled him like most of the world does. You bought into the lie that his life has no purpose. You've chosen to suffer through those uncomfortable shoes instead of picking up some glitter and Dr. Scholls insoles. Sure, it wasn't as easy as going to Planned Parenthood, but it could've been done.

That's the difference between you and me. My shoes are getting pretty comfortable now, but only because I've chosen to make them that way.

I'm not mad at you anymore. Actually, I wish I could meet you.

Maybe someday we can have coffee and talk about our shoes. You bring yours and I'll bring the cushion and glitter. It's not too late to make them a little more comfortable.

Jesus loves you and I do, too.

Give Stephen a hug. I bet he's really good at it.

Love,
Amber

Oh and P.S... Happy Down Syndrome Awareness Month!

Wednesday, October 1, 2014

Angels

Today is October 1st. A day we welcome as the official beginning of Fall traditions, cooler weather and pumpkin spice everything. I didn't think much about Fall until we moved to Texas. In Florida, we have two seasons: hot and hotter. Though Texas is no Smoky-Mountain-rainbow-blanket when it comes to changing leaves, it's all I've experienced and it's quickly become my favorite time of year here.


October 1st also marks the first day of Down Syndrome Awareness Month. In lieu of that, here's what you need to know about DS:

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.   
  • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
  • There are more than 400,000 people living with Down syndrome in the United States.
  • Down syndrome occurs in people of all races and economic levels.
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  • A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
  • People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives. (ndss.org)
The sad reality is that, though we've come a long way in studying and understanding in the last few decades, Down syndrome is still one of the top reasons a woman chooses to have an abortion. Though there are over 400,000 living with that extra chromosome, more than 90% of positive prenatal testing results in the termination of that child. Unfortunately, Down syndrome is viewed as a burden; something no one wants to deal with; something so drastically misunderstood that Doctors actually apologize when they tell you your child has been blessed with it. 
Don't get me wrong, it's not ever easy to hear something is medically wrong or different with your newborn baby, but my heart aches when I hear that mother's are actually in turmoil trying to decide whether or not to keep their chromosomally enhanced child. Though probably more prominent in other countries, America is not immune to children being left at the hospital or given up for adoption solely based on their diagnosis. 

I've been told of more newborn diagnoses in the last week than I have in Ben's lifetime. It's no mistake that the Lord is using my little guy to influence new Mama's struggling with those beginning feelings and early learning experiences. I mean, really...It's hard not to fall in love with Ben. 





If you're a new Mama reading this, welcome to Holland! You are loved. You are understood. You are not alone... and you are enough. I fully believe God gives us more than we can handle so we have no other choice but to lean on Him. Take it one day at a time. One day you'll think back on these early, grievous days and you'll chuckle. You'll be so in love with those almond eyes that you'll be convinced we should've all been born with them. 

All babies are a blessing, but babies who wear Designer Genes? 

They're proof that angels exist. 

Tuesday, September 23, 2014

Choices

I didn't want to share this. I started writing this the end of July. I've learned something since then. (I say that a lot, don't I?) It's a raw one. I'm not sorry. 

I went there.

I've been before, but it's been hitting me much harder this week for some reason. Maybe I've got too much time to think. Maybe I just needed it. Maybe my what if's are resurfacing. Regardless, I went there.

We celebrated Alexis' first birthday a few weeks ago. I made cupcakes, hung decorations. We had a cookout and basked in the East Texas sun. I made a cake in the shape of a number one. I had made it for Ben for his first birthday, too.

As I put it away, it stung.

"I'll use it again someday. When she's ten and eleven...

If we make it that long."

Oh God, I went there.

The powerful sting of my most terrifying 'what if' went deep this time. That brief thought had occurred to me before, but just at the surface. I hadn't let myself go any further; quickly changing my thoughts to something, anything else. I don't want to think about it. The future is not a place I go. I can't. I don't let myself.

One day at a time. One moment. One millisecond sometimes. That's all I can handle, right?

Maybe. Maybe that's all I'm supposed to handle.

On my own, I'm a mess. The days I choose to bury myself deep inside the valley are the days I learn the most. It is a choice, after all.

I don't say much to people. That's a choice. I don't want to be a burden. I don't want to need help so I don't ask for it. I don't want to be vulnerable. Who does? I mean, really.

But here's the deal...

People can't understand what they don't know. Did you get that? People won't help if they don't know you need it.

I do need help. I need people. I need encouragement and I need to be vulnerable. I need Jesus in the flesh. That's what it means to be a Christian. "To be like Christ." What did Jesus do while He was on earth? Loved people who didn't think they needed to be loved. Helped people who didn't want to need help. 

Then He showed them how to pass it on.

Be Jesus in the flesh. Be kind. Be vulnerable. Bear each others burdens.

Love on somebody today. Let somebody love on you. 

(And if you don't know how to do that... watch Ben. He's really good at it.)



Tuesday, August 26, 2014

Pickles and Promises


I'm an old soul. I love old movies, old TV shows, old houses. Now that we live in Mayberry, I've deemed it necessary to brush up on my Andy Griffith Show knowledge. Have you seen the pickle episode? The short version is that Aunt Bea's homemade pickles aren't exactly on the favorites list for Andy, Barney and Opie. At the end of the episode, Andy and Barney try to decide what to do with said heinous pickles. Andy reluctantly exclaims, "We'll do what we shoulda done in the first place... Learn to love 'em."

I'm not sure if this is proof that I'm crazy or that God can really use anything to teach me a lesson, but I indeed learned something with that statement.

I said in my last post that we can't get out of the valley. I've been in this season of intense anger. This song played at church on Sunday. In the midst, I found myself raging on the inside. "I trusted you... and look what happened." I proceeded to list all the things that make me angry; as if He didn't already know.

A few days later I heard Andy say that line. "Just learn to love 'em."

Learn to love it.

I can spend all this time complaining and adding extra knots to my burdened shoulders, but it doesn't change anything. I can worry about my husband and my babies all day long if I want to, but it doesn't do any good. I can yell and scream at my Creator and try to claw my own way out of this freakin' valley, but that doesn't mean I'll get out.

As Christians, we're called to praise Him in the storm. To be thankful for trials and hard times - - valleys. That seemed a little bizarre to me until recently.

But the idea is not that if we praise Him, if we're thankful, that it will change any of the circumstances. What happens when we change our mode of thinking and focus on Jesus? What happens when we notice the good things and focus on the blessings instead?


We just learn to love the valley


Tuesday, August 12, 2014

Faith

Hope.

I've been bombarded with that word lately. THIS song has been on unintentional repeat. I'm pretty sure I hear it every time I get in the car. The thing is, we can't get out of this valley. Everything good that happens comes with an overwhelmingly hard sliver of crap. Every time we think we're making our way up the mountain, we slide right back down where we started.


I'm tired.

I look at myself in the mirror and I know I've earned those dark circles. I feel the invisible bruises; I carry the burdens; I see the scars.

"It's just a season" they said. "It'll come to an end" they tell me. "It won't be like this forever" they mutter. Really? What about the things that won't end? What about Sandbox demons we are constantly fighting. What about those conversations about whether or not Lexi will be here to see her twelfth birthday or asking if she can get your lungs if something were to happen to you. How about wondering if Ben will ever go to college or live on his own.

Those things don't go away.


Things like cancer and car wrecks and family issues and depression. You can fight those and you can win. There's an option to beat it. There's hope that you'll get there. There's hope that there's light at the end of the tunnel.

We won't win this shit. We can't beat Down syndrome or CF. There is nothing to win. We've tried crawling up the mountain; we've even tried sprinting. We can't get up there. It doesn't go away.

Maybe I'm a little angry today. I'm not sorry.

Do I have hope? I don't know.


Maybe my hope has shifted.

There's a difference in hope and faith.

Webster says hope is to want something to happen or be true. But faith? Faith is knowing that it's true.

I have hope that I'll sit and chat on a front porch one day. I'll sip my coffee and reminisce about the old days. "Remember all those years ago when life was really hard? Remember when we never thought we'd get here?" Hell, maybe we'll still be in the valley then.

I don't even have hope that it'll end. I'm not sure what I'd do if it did.

Oh, but faith? Oh I've got faith.

I have faith that even if we stay in the valley the rest of our lives, we won't be alone. I have faith that Jesus is holding my hand, sometimes pulling me along because I can't even move without Him. I have faith that this is a story He's going to use to make Himself famous because, in the end, it's not about me anyway. I have faith that we'll keep moving even if it never ends. 

Who knows. Maybe my front porch will be in Heaven and I'll sip coffee with Jesus. Maybe I'll look back at this post and realize faith and hope go hand in hand. I'm not there yet.

But wherever, whenever; there is faith. 


Monday, July 28, 2014

Fit

I have very clear memories of climbing up in my dad's lap when I was little. He'd sit down in his big recliner and tap his leg, motioning for me to join him. We'd read a book or watch an old western. I felt safe and secure, sometimes falling asleep. 

Have you ever looked around and pondered where exactly you fit in the great big, crazy world? Maybe you think you look different than everybody else - too different; maybe you've done things you're not proud of and you think nobody understands; maybe you're like me and have a story you're still working your way through. 

(Throwin' it way back, y'all. Me and my pop circa 1988.)

I threw a doozy of a pity party the other day. Describing incidents that other people had on their plates. Venting to Micah and wanting him to fix it without actually fixing it. I said something like, "I want to sweat the small stuff. I want to worry about what these people worry about. I want to be on the other side of whatever 'this' is." 

After venting to Micah, I figured it was only necessary to give God an equal earful. "I just want to fit somewhere."

Then I had this very clear picture of God holding out His hand, pointing right in the middle; "You fit right here." I felt safe and secure and fell asleep.  

I don't have it all figured out, but I've come a long way. I don't always understand, but I'm not sure I need to. You can't know it all and still have faith. 

It's simple. It's not about me. As much as I want to fit here, it really only matters that I fit there. You fit there too, ya know. Maybe you're like me and used to get caught up in judgment and stepping as lightly as possible so you don't piss off God. This whole "Jesus loves you but only when you follow these 500 simple steps," when the truth is that Jesus loves you. Period. No if's, and's, but's or when's. 

He just does. 


Friday, July 18, 2014

What If

Monday nights look a lot different for me now than they did a few months ago. God answered a huge prayer for me and gathered a group of women that don't mind the nitty-gritty part of life. I call it my therapy, but it's really just friends doing life together. For me, it's one thing to write things down. It's a whole 'nother ballgame to say it out loud. We're following THIS book. Finding the beauty in the everyday. Picking up pieces to make them look as beautiful as we want them to. Dude. This Ann girl's got a way with words.

We've talked about fears. As mom's, we've got a lot of them. When you have a baby, something flips a switch in your heart and you realize that the well-being of this chickadee is in your hands. You worry about the what-if's and do your best to keep them as safe, healthy and happy as possible.

But sometimes your what-if's become your reality...

Sometimes you stumble through life instead of run. Sometimes you hold your baby and wonder why God gave you this one. Sometime's worry leaves you paralyzed.

You know what Jesus said about worrying?

Don't.

Philippians 4:6-7

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."

Notice it doesn't say, "Hey girl, you can worry about your kids and your marriage and your finances if you want. It'll really help the situation."

"Don't worry about anything."

Just tell Jesus about it. And thank Him.

Phew. Tall order, huh?

Facing your biggest fears, your deepest worries, your what-if's is the scariest part of life, don't you think?

What if something happened to Micah? What if something happens to my kids? What if I can't raise them?

Those were mine.

I used to worry about things daily. Then I lived them. And that's when God got to take over. That's when He had to take over. I can't do this alone.

Do I still worry sometimes? Dumb question. I'm not super-woman. But I do think that's why Jesus used the analogy of taking up your cross daily and following Him. (Luke 9:23) Being a Christian isn't just a prayer you pray. It's putting on that t-shirt daily. Giving God your what-if's daily. Letting go and learning something new daily.

What-if's are okay. Everybody got 'em. It's not so much what they are that matters...
It's what you do with them.

Happy Friday.




Pics taken via instagram. Follow me @ambertwebb. 

Thursday, July 10, 2014

Reins

I've had several people remark about what I said on the last post.

I've been married almost eight years, most of which have been spent nestled in what seems like the never ending valley. I'm used to the dark. I'm stupidly comfortable here. I said I wouldn't trade it. I told you I wouldn't change anything.

That's hard to swallow, huh?

You're right. It's a heck of a claim. How could I say that? How can I possibly look back at everything we've been through and tell you I wouldn't change it?

Don't misunderstand me here.

I wouldn't have chosen this. I didn't dream about Sandbox demons, having children with special chromosomes, an empty pantry or life changing quicker than Micah's stick shift. You've seen me mourn and ask questions and be angry.

But I see the outcome. I've learned what's important in life. I've learned over and over and over not to take life for granted. I've learned what it means to love Jesus and how Jesus loves me. I've learned what family means. I understand the difference between friends and acquaintances with nice things to say.

I know I have a lot more to learn. I know Jesus isn't through teaching me, molding me, making me exacting what He's called me to be.

Do I think I could've learned all that without the never ending valley? Me, in my finite mind and prideful heart would scream, "Hell yes I could have!" But that's what trust and faith and handing God the reins means. Letting go of life all together. Crawling up in the arms of a loving Savior and letting Him use whatever it is you've got for His very own glory.

Everybody's got a story. Everybody can look back over life and go, "Couldn't we have gotten here another way? Couldn't I have lived my whole life without that?"

You think so.

You think you could have.

You, in your finite mind and prideful heart would scream, "Hell yes I could have!"

It's time to let go of the reins, friends.

I dare you.


Friday, July 4, 2014

Birthdays


Yesterday marked one year since our little Miss came into the world. Bright eyes, bushy tailed, head full of dark hair. I remember that moment like it was actually yesterday. I'll be real: I checked palms, looked close for almond eyes. Not because I was afraid. Just 'cause I didn't want to be blindsided this time. 

Those first few days weren't quite as uneventful as I had wanted them to be, but I stumbled home to settle into our family of four. We were happy. She was as beautiful as I had pictured. Her brother was (and is) obsessed with his little friend, smothering her with hugs and kisses.


Sometimes I wish I could go back to those first days. Pre-blindside, totally naive and engulfed in the goodness that is a newborn baby. Sometimes I wish I could erase all the valley's, all the mess and tears and hard days.

But then I remember how good it feels to climb the mountain after the valley. How beautiful the view can be when you've been so far down that you've gotten used to the darkness.

I look at my children and feel blessed to love them as much as I do. I remind myself that very few people have the opportunity to experience what we will. And remember that, even though I probably wouldn't have chosen the valley's on my own, I don't think I'd trade them.

Alexis is a joy. Her curls are still intact, her brother still smother's her with love, she dances and sings and loves on him right back. My emotional pendulum still swings somewhere between, "Everything's great" and "I'm a mess" but we're making our way up that dad-gum mountain. I can see a sliver of the view and I'm fairly certain there's a rainbow. I'll let you know when it's all I see.



Happy Birthday, Miss Priss! Here's to many, many more. 
I love you. 

Thursday, June 19, 2014

Puzzles

I've heard of more tragedies and deaths in the last two weeks than I have in my whole life. So many people have lost loved ones, have had to say goodbye, have been blindsided by children, husbands, parents, friends leaving this earth for another, more spectacular life. We've been forced to ask the hard questions. We've been forced to face the truth. We've been forced to our knees... which is exactly where we need to be.

The biggest question regarding my faith in Jesus that people ask is why He allows bad things to happen to good people. Why God doesn't just wave His hand and stop all the pain, all the hardships, all the questions. Why He doesn't just show up and make it better all at once.
I've heard this question answered a dozen different ways. Everything from pointing to the depravity of man, to the judgment of God, to the fall of humankind, to our own free will and our own decisions. I see the weight of those arguments and I'm not discrediting those at all. But I think we overcomplicate the answer.

To me it's simple...
I've faced a lot of darkness in my life. I've asked that daunting question over and over. I've always known the truth. I know that there's a God, I know that He says He's a good God, but I'd be lying if I said I always believed that. That's what the hard part of life is supposed to do. I really think God delights in the questions. I think that's why those waves, those woods, those really, desperately hard things that we may never truly understand happen.

...He gets to prove Himself. He gets to answer it with the truth of His peace that surpasses anything we can explain. 

When my life was falling apart for what seemed like the millionth time; when we had been invaded with rats and had to move, when I was just beginning to process the idea that my daughter had a terminal illness, when we were still picking up the Sandbox pieces, I had a breaking point. I came out of our bedroom with a t-shirt that had become a new home for our furry enemies. With tears streaming down my face, I told Micah I was going to run. I had to leave and I was going to run until I couldn't run anymore. So I did. I escaped to the trail behind our gym. I ran until my body was drained of any strength I had left. I sat on a park bench and screamed at my Creator. "I have nothing left! Nothing!"

I was right where I needed to be.

"You need nothing else. I'm it."

So go ahead... ask the questions. Scream and cry and get angry. You're allowed. You're supposed to. Let God prove His goodness. Give Him the pieces to pick up. It's just not your job.

I thought my puzzle would look different. Maybe you thought yours would, too. Mine's got jagged edges and a doozy of a dent right in the middle. I've tried over and over to put it together myself. I want to see what piece is coming next so I'm not surprised by that one that's still in the box. Then I remember that timing is everything. That God's hiding that piece for a reason and that my puzzle isn't mine at all.

There will come a time that I won't want to know what piece is next. There's gonna be a time when my trust is without borders, when my soul is at rest and the oceans will be welcomed. I'm not there yet. I still hold on to the things that I haven't even been promised in the first place. I still think I can pick up my own pieces, but that's when Jesus gets to prove otherwise. And, for now, that's enough.



Saturday, May 24, 2014

Separate

Over the years, I've been able to do a lot of soul searching. I've reevaluated what I believe about family, friends, church, music, and especially of God. I had this view of God that He was up in Heaven waiting for me to do something wrong so He could punish me; 'cause that's all He did. I used to think trusting Jesus meant following a set of rules. I used to judge other people and tell them they were wrong because they didn't live just like me.
I spent a weekend in Dallas with a friend. I went to her church and we took our places with the thousands of other people crammed into the building they'd clearly outgrown; outgrown so much that they needed 4 other services throughout the weekend to accommodate the crowds. I'll be real: I was warned about churches like this. I believed, for a very long time, that "mega churches" were doing something wrong and that there was no way that many people actually enjoyed going to church.
One of the first things Matt Chandler said when he greeted the crowd that morning went something like this: "We're so glad you're here this morning but if this church isn't your thing, there are a lot of other churches in town." He went on to name close to every other church around and told his congregation that "We're all on the same team" and to "Find one they love even if it's not The Village."

Do what??

Growing up, I heard pastor's bash other churches in town, going as far as preaching entire sermons about what these other churches were doing wrong. Music, versions of the Bible used, how they dressed... you name it. I learned to compare and judge other people. I believed that this, "being separate from the world" the Bible talks about meant that there was only one denomination doing it right.

Let me back up here. I'm not angry at people who believe like I used to. I don't think you're wrong in how your choosing to live out your faith.
What I do think is wrong about how I used to live is the judgment toward the rest of the world. This high-horse, "look how much better I am than you are" mindset.

I want a lot of things for my children. I want them to know how much Jesus loves them; I want them to know that churches with lots of people is a good thing; but probably most importantly, I want them to feel loved for their differences, not judged or condemned or asked what they (or their parents) did wrong to deserve such a tough road to hoe.

I want them to know that Jesus is ready to forgive and that our job is to love on people, not tell them they're wrong. I want them to never judge a book by it's cover. I want them to know that believing in Jesus, that "being saved" is not always marked by a change in your lifestyle but by a change in your heart.

A tangible example... This story and video reveals something about me. I used to be the protestor. Now? I'd bring them water and let Ben love on them for a while. Everybody needs a Ben hug, right?

Always remember, sweet babies of mine, we're on the same team. Love wins.


A couple things you may have missed... 

My brother is a talented singer/songwriter and he graciously wrote a fantastic song about our sweet Alexis. With it being CF Awareness Month, there's no better way to celebrate in my book. Love you, Eli! 


And if you missed my piece on ibelieve.com, you can read it HERE. I love sharing our story!

Happy Memorial Day weekend. Remember those who defended (like my hubs and his buddies) and are still defending our freedom today.  

Wednesday, May 7, 2014

Island Time

There comes a point in everyone's life when you just have to stop. It may be forced, like a tragedy that literally stops you in your tracks. It may be welcomed, like a vacation to the islands with your favorite. It may just be playing outside with your kids and realizing this is way more important than laundry. Whatever it is, there's a reason for that stop, that nudge, that island time that we so easily forget about.




I've been on this pendulum this week, swinging somewhere between this island mentality and real life. "Don't worry, be happy." Bobby knows what he's talking about there, don't ya think? Downright Biblical, eh?

Since Alexis' surprise, I've made a conscience effort to simplify my life. I got rid of things we don't need, made lists of things I wanted to get done, and reminded myself that worrying and being happy were both my choice. It's so easy to overcomplicate things and to miss out on the good things.
It's like this: life is as simple or as complicated as you see it. Life is as wonderful or as horrible as you say it is.



In Webblet news:

Ben is soaring at school. Mayberry is everything I was promised it would be and I couldn't be more thankful. He loves his new turf and they love him. On a developmental scale, he's working hard and making all the right strides. I still have yet to associate with another kid as delightfully happy as my Ben. A friend told me that Ben's going to be the Patch Adams of the children's hospital and I have a feeling he's going to be right.

Alexis is doing well, all things considered. We work hard at keeping her world as germ free as possible, but still as "normal" as we can. Breathing treatments, medicines and hand sanitizer are all staples in our home now. I'm not naive enough to think this is how it will always be. I know she'll never be better and I know CF is a fight we won't win without a miracle. These woods that some people are privileged enough to get out of? We have a campsite there. In my world, they're nestled close enough to hear the beach and they're only scary if I let them be. I don't know how long we'll get to keep her, but somehow that's okay. Nobody's promised tomorrow. Ryan wanted his frisbee and ended up playing with Jesus. When it's time, it's time.

I know what it's like to mourn, to have your world turned completely upside down. I understand heartache and fear; I know what it's like to survive. But I also know what it's like to come out on the other side, to embrace island time and to live on purpose.

Life is your gift; living is your choice.

Happy Hump Day.


Tuesday, March 18, 2014

Ache

"Just a reminder to continue to give treatments as prescribed by Alexis' doctor. They will... uhm... Well, they'll help prolong her life."

She called from the CF clinic in Dallas; just a routine reminder. I'm sure I wasn't the only one on her list. It wasn't so much what she said, but the way she said it. That pause like she knew what she was going to say would bring up buried emotions for me. Like she knew those words, "prolong her life" meant that my daughter's life needed help in that area. It stopped me in my tracks that morning and her "uhm" rang in my thoughts the rest of the day.

I knew that feeling. That ache.


I had never heard of Cystic Fibrosis before August 16th. I never knew anybody that had it, never learned about it in school, never had a reason to Google it before. Her pediatrician called me sounding somewhat panicked. We were supposed to have an appointment that day, but we rode to Dallas with Micah for a job instead. I postponed it. I shouldn't have. I picked up the phone to hear that kind voice start with, "I didn't want to tell you this over the phone, but I couldn't let it wait any longer." She said her newborn screening came back positive for CF. She said we needed to do some other testing to make sure and that she was sorry. She choked back tears as she was clearly dumbfounded "because of Ben's diagnosis." I told her I didn't know what CF stood for and I certainly had no idea what it was. "What is that? Like a bad cold or something?" She explained some aspects of it, but I Googled it on our drive back.


Micah got it right away. It took me a while. I really didn't understand. Maybe it was denial. You bet your sweet bippy I questioned every last morsel of God's plan when it really hit me. It took a week to get the sweat test results back, but I already knew. People told me not to worry. "It says those newborn screenings are usually wrong." But I knew. I still cried, though. It still hurt to tell people.


I knew about Down syndrome.  It didn't feel like it at the time, but I knew more than I gave myself credit for. I still ached, though. It's still hard to know Ben needs extra help. It still sucked to tell people. So, in a way, I already knew how that ache felt before August 16th. I had felt it before.


I've written about this in the past. This saying, "God doesn't give you more than you can handle." I'm just going to reiterate that it's a load of crap. I hear this saying a lot too; "I don't know how you do it." Come on, people. You don't know how I do it because you've never had to. People said the same thing when Micah was in the sandbox. I was a single mother with a son with Down syndrome. It looked impossible. It wasn't. God gave me more than I can handle, even then. But life still had to go on. You probably don't think so, but you would do the same thing. Life doesn't stop happening just because it gets hard and God doesn't stop loving just because we think so. Our agenda, our feelings, our actions toward others (more on that one another time) - all things that God is working hard to shine through.

Life goes on. God's still there. Love wins.

Just remember that.

Sunday, March 9, 2014

Changes

There is an appointed time for everything. And there is a time for every event under heaven: 
Ecclesiastes 3:1

Sorry for the absence lately. Truth is, I'm still trying to navigate whatever this normal is around here. Things are changing constantly. Some are quick, painless changes while others are long and painful. It's hard to know when to write it down for fear that everything I write will be about the long and painful side. So sometimes I just hibernate and try to work it out for myself.

                                

There's a time for everything. Good, bad, ugly and indifferent. Lately, I've teetered somewhere in the middle of those. We've had some good days. We've had some ugly days. We've had some, "I want to give up days" and we've even had some mellow, indifferent days. All of those are okay. Like that lonesome February post said, God is in it all. Even if nobody else is, He is there. That's been a heck of a lesson for me.


People are afraid of what they don't understand. People don't understand my normal. Are we following? It's been a lonely road. Friends, family: two things I used to be good at. Things I used to have. Things that are few and far between most days. Things I need. Things I miss.

There's a time for everything. Even loneliness. Even hurt. Even sickness. Even those hard questions about the future of our family and my children. God's not surprised by any of it. And I'm glad.


As far as the changes happening around here:

Moving to Mayberry is proving to be one of the best decisions we've made. Ben will turn three in just a few weeks (Seriously?) and with that comes the milestone of "graduating" out of ECI and moving on to school. Early Childhood Intervention is a state funded therapy option that Ben has been a part of both here and in Florida. We've been blessed with some of the best therapists in the world, and Ben has made so much progress in all aspects of his development because of these fantastic ladies. Starting school will be a hard change for this mama bear, but a good change for him. We've met with the teachers and therapists who will be a part of this next phase and I couldn't be happier with who God has placed in our lives. Mayberry has been good to us and God's not surprised by that either. Now if I could just get used to this new independence that will accompany my three year old. Phew!


Alexis is growing into quite the little bundle of joy. With the exception of some sleepless nights the last few weeks, she has been a happy eight month old. We will be heading to Dallas this week for her monthly appointment and I'm always hopeful for good news. Not gonna sugar coat it: the news is rarely wonderful, but they take good care of her and, even though it's a long day, I know she is in good hands.

As far as writing is concerned: some new changes will hopefully be happening with this little space on the web. I'm really looking forward to seeing what God does with our story. "If you've got a book in you - for God's sake write it." We'll just leave it at that.

Happy Sunday, friends. Be encouraged knowing God's not surprised with your life just like He's not surprised with mine.

Life's not always easy, but God is always good.

Monday, February 17, 2014

There

In the rare, quiet of the morning, You are there.

When I mourn with crying babies, You hold me as I hold them.

When I cannot face the day or when I long for morning, You understand. 

In the midst of chaos, in the midst of tears, You see me. 

When I cannot see past right now, You see it for me. 

You rejoice with me on the good days. 

On days we fight Sandbox demons and overwhelming diagnoses, You fight with us. 

When the Village falls apart, You pick me up.  

You are a God of love over judgment; joy over anger; peace over condemnation. 

When I am worn, You are not.

When the world ignores, You see me.

When I feel forgotten, You remember me.

When I am unloveable, You love me. 

In my weakness, You are strong.

When I have nothing left to believe in, I believe in You. 


Tuesday, January 14, 2014

Beauty

Down syndrome is one of those things that causes you to look at the world a different way. Seeing things through Ben's eyes has been a God-given adventure. His infectious smile and genuine hugs are unmatched. He shows love better than anyone else I know. The kind of love that cannot be taught or understood. I've heard that so many times throughout this DS journey: "They love like nobody's business." Down syndrome is a beautifully misunderstood diagnosis. We are afraid of what we don't understand. At first, I didn't understand. Hearing professionals say that your child will be "different" is never an easy piece of news. I get it. And I'm not ashamed to say that it took me a good while to find the beauty.

Then there's cystic fibrosis. Can we just be honest? CF sucks. Seeing Alexis sick in the hospital was one of the hardest things I've ever experienced as a mother. And, unfortunately, CF and the hospital are like that freakin' peanut butter and jelly sandwich. And oh how I wish that wasn't true.

This is a constant learning experience for me. This balance of diagnosis'. This finding the beauty. I told God just the other day... "I just feel like I should've found it by now."


So let me start over...

Benjamin is one of those kids who makes you look at the world a different way. Alexis' baby blues and infectious giggle are unmatched. The love my kids share toward each other can't be taught. Ben can't meet a stranger. I'm jealous of my daughter's curls. 

Benjamin has Down Syndrome. 

Down Syndrome does not have Benjamin. 

Alexis has Cystic Fibrosis. 

Cystic Fibrosis does not have Alexis.

It's like this: God's got this gentle way of grabbing me in the gut and giving me these "ah hah" moments occasionally. Just reminding me that I'm not alone. That I won't find the beauty in either diagnosis because that's not where it lives. Beauty is defined by the people who possess it.

Today those people are Ben and Lexi.

So take that and go love like nobody's business. You're welcome.



P.S. I had the honor of writing our story for a magazine called Christian Women's Voice. If you'd like a copy, head over to christianwomensvoice.org or click on the cover on the right side of the blog. 

Sunday, January 5, 2014

Army

(Disclaimer: Between fevery nights, sleeping in a recliner and toddlers who wake up early, Mr. Sandman has not been kind lately. This post may or may not reflect that.)

Five days into 2014 and I call for a do over.

Sickness has kicked us where it hurts. Ben spent the Christmas holidays under the weather and after a scary, almost-took-him-to-the-ER night, we got some meds in him and Brother is good as new. Thanks to those fun germs, Grandma and Grandpa left the 'View with a little more than they came with. (Sorry 'bout that...) 

Fast forward a few days. We rang in the New Year semi-unscathed, only to wake up to a feverish little Alexis. My heart wanted it to just be those teeth giving her trouble, but my head knew otherwise. She and I spent that night snuggled up on the couch. I called the CF Clinic the next morning. Since Micah was out of the country, Ben stayed with friends and Sister and I made the trek. 

Auntie Bee was able to meet us there and we spent the next three hours waiting to hear whether or not Alexis would have to be admitted into the hospital. 

"Based on her diagnosis, the fact that we are entering the weekend and that you live so far away, we are going to keep her here." 

Freakin' flu. 

Truthfully, once her fever finally broke, she was a ball of energy. Our hospital visit was basically just a big precaution. 

We are home now; our first official CF related hospital stay under our belt. I feel a little relieved about that. I'd love to tell you that she will never have that happen again, but we all know that's not true. So I'm grateful (is that the right word?) to know what to expect for next time. 

I feel like I could sleep until Wednesday, but other than that we have survived. 

I'm so thankful for Dallas Children's. It takes a special kind of person to take care of sick babies and Lexi's doctors and nurses were no exception. 

It's always amazing to me how big our village has gotten. I love when the village turns into an army. Those you thought you could depend on drop the ball, while those you never thought about carry it with gusto. 

Thank you for your prayers. They are felt. 

Thank you for standing beside this Mama Bear; never wavering. 

Onward now. Let's march.