Rare Disease Day: Why I Quit Saying "As Long As He's Healthy"

When you announce you're pregnant there are certain conversations you can expect to have multiple times. The main one starts with the question "Do you want a boy or a girl?" That always seemed like a silly question to me since you don't get to decide. But moving beyond that. After you've either expressed a gender preference or said you don't care someone- either the expectant parent or the other person- almost always says, "As long as she's healthy." Everyone smiles, agrees that's most important, and moves on. 

But what happens when the baby isn't healthy? I always want to stop the person and say, "What if he's not? What then? You going to send him back?" It also seems like a ridiculous statement (that I've been guilty of saying) because you can't do anything about it. If your baby is not healthy, you have an unhealthy baby. He's still your baby. 

No one expects to have something wrong with their baby. Our first was born and appeared perfect. We were thrilled and took him home. But he wasn't healthy. He almost died multiple times from a rare disease that we had never heard of. 

I wouldn't trade our boy for any other kid, healthy or not. 

The point isn't that your baby is healthy, although who wouldn't prefer that? The point is that it's your baby. When you got pregnant you signed on. This is your child, come what may. Being a parent grows you up. That's how it's supposed to work. You need to grow up when you become a parent. 

A month in the nicu and looking forward to a life of rare disease will do that. You'll grow up because you have to. You'll learn to measure formula, change g-tubes, and argue with the insurance company. You'll see the inside of a doctor's office more than the average family. You'll avoid those germs and skip the anti-vaccination arguments because the consequences can be so serious.  

You'll be better because of it. You'll deal with the setbacks, the unexpected, the delays. You'll discuss your child with doctors and guard him fiercely from people who don't understand. You'll give in to fear sometimes and then you'll get back up. 

You'll quit saying, "As long as he's healthy" to expecting parents. 

We've had two more children, both boys, since our first was born with IVA. With a genetic disorder there's a 25% chance with each pregnancy that the baby will have IVA. This means we have an amnio. This means we have a late amnio in case of complications.  This means we hope and pray I don't have the baby before we get amnio results back.  So far no one has asked, although I'm sure some have wondered, why we had more babies. Here's my answer: no one is guaranteed a healthy baby. It doesn't matter if you are carriers of IVA or not. 

We love our boys. Even if they're not healthy. 

Two Ways to View Your Body

I love to cook and bake. This is a good thing because my family loves to eat. In my kitchen I have kitchen equipment and tools. I have a Kitchenaid mixer, whisks, spatulas, and bowls. I have knives, wooden spoons, and measuring cups. Each tool is designed for specific tasks and they aren't always interchangeable. 

Your body is also a tool. It houses your soul. Your body allows you to accomplish tasks: to walk, breathe, dance, write, hug a friend, grow a baby. Your body allows you to kneel and fill your backpack with books or tie your toddler's shoes. Your body is the tangible part of you. 

You should take care of your body and present it well.  I wash my kitchen equipment when it gets dirty. I do maintenance on my mixer. I clean the oven and wipe spills out of the microwave. Take care of your body. Give it the food it needs to work properly (ouch!). Exercise so it runs well. Maintain a healthy weight so you can use it at the optimal level. Don't put things in it that will destroy it. 

But remember it's a tool; it doesn't control you. You are not defined by what your body looks like.  God has designed each of us for the work He has for us; we are each unique, special, and different. 

Your body is also a temple. When you accept Jesus as your Savior, God comes to live within your heart. The Bible plainly tell us that we are the temple of God (1 Corinthians 3:16). We are a holy place, a sanctuary. That means we should clothe our bodies in a way that respects the presence of God. It's not yours to dress or present however you want. 

In the wilderness wanderings of the Israelites God lived in the tabernacle. There are extensive instructions about how the tabernacle was to be constructed and maintained. Later God's presence filled the temple that Solomon built. It was a place of majesty and beauty. That was where God lived. But now He lives within His people.

It is not wrong to develop a beautiful wardrobe. God cares about beauty. But it should also be modest and appropriate and feminine (assuming you're a woman!). We house God. When we start to take care of our body as a tool we can become obsessed with our appearance. But if we remember we are also the dwelling place of God we will be appropriate in how we present ourselves. 

Don't abuse your body by mistreatment; it is a tool for the work you are meant to do. Don't worship your body by improper presentation; it is the temple of God.

How were you taught to view your body? Do your beliefs affect how you dress and care for yourself? 

A Letter to My Boys about Love

Dear Boys,

With all the media hubbub circulating I've read some about 50 Shades of Grey. I haven't watched the movie or read the book and I never plan to. I hope you never do either. However the chance that you'll make it adulthood without some kind of exposure to that or something just as vile seems small. So I want to tell you a few things.

A real man never takes advantage of a woman. (And vice versa too.) Your strength is to help, not hurt, others. Your manliness is a gift from God to benefit others, never mind what people say about it. Being a man is good and real and important. When you meet the woman you love woo her. Marry her. Protect her. Make her safe in your love and in your presence.

Love sacrifices itself, not the other person. Love doesn't demand the other person submit to claims that harm her soul and her body. Love doesn't settle for sex that only fulfills one person or drags the other person to the pit of something that feels- something that is- unclean.

Words matter in love. It's not enough to keeps your hands from violence and her body be safe. Keep your words from violence and let her soul be safe. Love isn't safe; it's scary. But scary for you, not for her. Love is scary for you because you are responsible, because you could lose her. Love should not be scary for her because you might hurt her.

You gain nothing by making her feel small. Build her up. Encourage her. Believe in her. If you can't do those things, don't marry her. Don't ask her to entrust her future to a man who can't see the gift that she is. At the same time, choose carefully. It's your future too.

You are her protector. You defend her from the world. You defend her from evil. You certainly make sure that evil toward her never comes from yourself.

I have never once worried that your father was going to hurt me or make demands that broke me. My love is safe with him. He would lay down his life for me and we both spend our lives, every day, for one another.  Be a safe place. Even when being a strong, steady man doesn't seem flashy- when it doesn't impress others- don't change. Those people aren't worth impressing and you will destroy your own self in the attempt.

Real love may never make the movies. It may not gain thousands of followers or fans. It will never be a life in the lights. Real love is lived out in the daily work of building a marriage and a family. Of becoming two people who are better together than they are alone.

Any of us can become something ugly. Any of us can step aside from the life God has called us to and become like the slime of the world. But you don't have to. Stay close to Jesus. Follow your daddy's example.

I love you.

Mom

6 Ideas for When You're Obsessed with Yourself

"But when I'm the center of my world, my world becomes very small- because I'm the only person in it."  Carolyn Mahaney

How many people do you know who consider themselves first? I have to point the finger at me because I always at least think of myself first even if that's not played out in my actions.  It's easy to try to blame our self-centeredness on selfies and social media but really it's just our nasty human nature. We don't need to be prompted to consider ourselves and how we feel and how situations will affect us. It does take supernatural power to consider how our words and actions impact others and change those words and actions when we need to. It's not enough to know unless we act. 

Sometimes we find ourselves stuck at a point where we are consumed with ourselves. Here are a few ideas to try to shake loose from yourself. 

1. Ask, "What will honor God in this situation?" instead of "What will they think about me?" Often when we need to make decisions or act in the moment our first thought is how we will look. Our first interest should be to find and do what honors God.  If I can ask "How can I honor God with my mothering?" instead of "What will make everyone think I'm a great mom?" when I'm responding to my kids it might change my life (and their lives too!). 

2.  Be interested, not interesting. Stop talking about yourself and listen. Be interested in the other person's life,  burdens, and joys. Stop trying to make yourself interesting. You'll make friends faster and be able to help more people.

3. Speak of Jesus often. We aren't anything special on our own so why try to act like it? Jesus is the special. Jesus is the main factor in our marriages, our families, our homes, our accomplishments. The more we talk about Him the less we want to talk about ourselves. 

4. Speak truth to yourself. Consistently reframe every mental discussion.  "No, I'm not working out so that others will think I'm skinny. I'm working out because this is the only body I have and I want to take care of it."  "No, I'm not training my child to obey so that others are impressed by my obedient children; I'm teaching my child to obey so that God can bless his life." Find the proper motivation for your work and remind yourself of it often. 

5. Focus on the work in front of you. If you are pursuing the work, you will have much less time to wonder what others think of you. Do the work and let the chips (and the impressions) fall where they may. God can take care of your reputation. 

6. Lay off social media for a while. Live your life without the public pictures and status updates. You'll also be living without the likes and comments and that's good for you. That's not why you do your work anyway, right? You can't wait for public approval. Live before God and let that be enough. 

Humility is not thinking less of yourself; it is thinking of yourself less. C.S. Lewis

What do you do when you find you're a little obsessed with yourself? 

Working Hands; Worshiping Heart

She seeketh wool, and flax, and worketh willingly with her hands. Proverbs 31:13

Work is necessary in caring for a home and serving your family. Meals have to be cooked, diapers have to be changed, clothes need to be washed, books need to be read. It takes work to practice piano and write blog posts. I want to have willing, working hands. I've written many posts about our work and doing it well. I've even discussed how to get the work done here and here. While some days you have to just do the work I want to have the right attitude toward the work. I want to be a cheerful woman, a joyful wife and mom. 

Work can be done with enthusiasm instead of a have-to spirit, but my heart has to be involved. I must focus on Christ. When I have a worshiping heart to join with my working hands the work seems much lighter and more joyful. Instead of a drudgery it's a joy to serve Christ in whatever He has given me for that day. Do I always achieve this? Of course not. But the state of our hearts makes a big difference in our lives and how we accomplish our tasks. 

It's much easier to have a worshiping heart in the morning quiet when I'm reading my Bible and no one else is awake. Or when all the children are asleep and I can work on something of my own choosing. But I want a worshiping heart in all of life, especially the parts that aren't ideal. I want a worshiping heart and working hands even when the kids are picking on each other or when Justin has to work late. I want to serve with joy even when little people are sick and the work is piling up. 

How can I keep the right heart throughout my day when things aren't perfect? I'm trying to be instant in prayer. I want to be in a constant state of communion with God. And I don't mean some kind of weird, trance-like meditation where I'm disconnected from the world and what I'm supposed to be doing. We are constantly thinking or talking to ourselves. Whether it's, "Oh my goodness, I'm going to kill these kids if they don't stop that!" or "If I were a better mom, my kid wouldn't do "X," or "I'll never get all of this stuff done today," we are constantly using our brain. 

Why not use that mental energy to be instant in prayer? We could continually talk to God and ask for wisdom and discuss what's going on instead of berating ourselves or following negative thought patterns. I've found time and time again how freeing and comforting it is to take everything to God. I can tell him everything that is causing me anxiety. I can tell him how helpless I feel to work with my kids in an effective way. I can tell Him how excited I am about a phone call or my husband getting back from a work trip. I can thank Him for the beautiful weather or the faces of my babies or holding His Word in my hands. 

It's a mental and spiritual exercise. It does not come easy to focus and retrain my thoughts like that. But it's much better than having imaginary conversations with people (those always seem to end badly). It's much better than wondering if what I'm doing would impress anybody. Try it. See if it doesn't make a difference to go through your day focused on God instead of just the work in front of you. How we do the work matters because the work is the worship. 

3 Reasons To Do It Like It's the Last Time

Do it like it's the last time you'll ever do it. 

I read that somewhere in internet world and it stuck with me. It's easy to take things for granted when you think you have unlimited chances to do it again. You don't enjoy the moment or savor the accomplishment or really even realize what you are doing.  Every time I've been pregnant I have reminded myself that even though we hope to have more children this could be it. This could be the last time there is life growing inside my body. The last time I feel little baby kicks and see the profile of a baby that I've yet to meet over an ultrasound. 

Doing it like it's the last time solves three problems. 

1. It removes the dullness from the routine. It's easy to think that I will be doing this same work every single day for the rest of my life. But I won't. There will be a last time that I pick up Micah and it's probably not that far away. There will be a time when my children are grown and on their own. Some tragedy could happen that would change my life in an instance. Then I would love one more day of our routine, even with squabbles, accidents, and dirty diapers. 

2. It removes the nerves from the public performance. I still get nervous sometimes singing and playing at church. Not anywhere near as bad as I used to but it happens occasionally. Music truly is something I love. I've always wanted to be involved in music ministry and I'm getting to live that dream. When I get up to sing I try to think, "This might be the last time I do this." That helps remove the nerves because I want to make the most of that opportunity. Whether you're speaking or presenting or singing or playing, anything that makes you nervous and passionate- do it like it's the last time you'll ever get to. Be grateful for the opportunity and give it all you have. 

3. It corrects your attitude. What if it were the last time you got to ____________? Whatever little petty annoyances you are seeing would just be a welcome reminder of the blessings that you do have. It will give you gratitude for the work and the opportunities that are before you today. Right now. The diaper explosion means you have a baby. The nerves before singing means you get to sing. You have a voice and can use it for Jesus. Doing it like it's the last time makes you grateful and makes you enthusiastic. 

I try to adopt this attitude every single day. Whether we're home and doing school/cleaning/playing or whether I'm at church serving or whether I'm doing something out of the ordinary that's outside of my comfort zone. 

If this is the last time I get to do this, is this how I want to do it? 

In My House: The Importance of Your Private Life

Psalm 101 has what would be my year's verse if I were choosing one. Guess I just did? Verse two says, "I will behave myself wisely in a perfect way. O when wilt thou come unto me? I will walk within my house with a perfect heart." 

Behaving myself wisely seems like a dream most days. So often I choose foolish over wise. I choose to not restrain myself. I choose to not make the decisions that would better my life and the lives of those around me. 

As relevant as the first part is, the last part of the verse is what I want to focus on. "I will walk within my house with a perfect heart." 

It's easy to put my best effort into my public life. My life at the doctor's office or the library or co-op. My life at church or anywhere that other people see me and may be trying to form an opinion of me. Yes, I can dress that up and call it guarding my testimony but you know what it is in my life? Pride! All I'm concerned about in those situations is how I look or what others think of me. I'm not concerned with what they are thinking of Jesus. 

But the life here in my house that no one else sees? That's real. I want it to honor God. If I focus on living my private life to honor God then my public life will take care of itself. My public life will come from love for Jesus and character. It will formed deep down inside me and not be a big show. 

I was listening to a sermon podcast (I'm really not always listening to a podcast) one morning while I fixed breakfast and a missionary said that the tabernacle got more beautiful the farther into it you went. The outside that was displayed to others wasn't the most beautiful part. That seems backward to me but it makes sense to God. He kept the most beautiful part for Himself.  

That's how I want my life to be. I want to be more gracious, more loving, more holy the deeper into my life you go. This means the deepest part of me, where no one else sees, needs to honor God. My thoughts, my dreams, my desires. That means even my words to myself need to honor God. 

That means the way I treat myself needs to honor God. My body language, my care for my body, how I dress should all reflect God. That means the way I use my time and how I develop my talents and skills needs to honor God. That means it's just as wrong to call myself names as it would be to call someone else names. 

That means the way I treat my husband needs to honor God and reflect His beauty. Marriage is a picture of Christ and the church. Surely we would all admit that our marriages matter?

That means the way I treat my children needs to honor God. How I love and train and discipline them. What tone of voice I use and the words I choose. The facial expressions and the actions. The way I spend my time with them. All of these things that no one else sees should honor Christ. 

That means the way I care for my home and do my work needs to honor Him. Whether it's washing the dishes, folding laundry, or cooking dinner. Whether it's writing or piano or learning a song for church. Whatever it is. 

Then of course the circle keeps expanding- church, friends, doctors, acquaintances, Justin's colleagues, facebook friends, blog readers. It's easy to act in front of those people and be something I'm not. But here in my head? I can't fool myself. I have to let God change me. Here with my husband? I can only fake that so long. I have to surrender to Jesus. 

I want to walk here in my home where I am now with a perfect heart: a heart focused on pleasing Jesus. 

Write Your Story: 4 Ways to Incorporate Writing into Your Daily Life

Right now I'm reading through Elisabeth Elliot's "The Shaping of a Christian Family." When her mother was growing old her children gave her a notebook and asked her to start writing down stories from her life. She took a page per vignette and shared a lovely history of their family.  Her mom's stories are featured prominently in Elliot's book. Would she have even been able to write the book without her mom's stories? 

Live your life. Write your story. 

When you write something down, you are leaving a message that future generations can read. Even if you find this part of your story boring your children, grandchildren, spiritual children may be inspired by your faithfulness or encouraged by your failures. Your story is worth telling. 

"I do not write to be understood, I write to understand." C.S. Lewis 

My goal is to write five hundred words a day every day except Sundays. I have yet to run out of things to write. The more I write the more ideas I have. The more ideas I have the more I write. It's a never ending circle. Writing helps me clarify my thoughts. Writing allows me to see solutions and possibilities I was overlooking. Writing provides many psychological benefits and many successful people make time for writing. 

Often when I'm writing I write things that surprise me. I don't realize that I think a certain way until I'm staring at the words. Something about giving voice to your thoughts also gives them substance, sometimes even newness. I want to be writing as I go through life. It's how I process. It's how I remember. It's how I understand.  

You may have no intention of blogging, writing a book, or making your story public. Find a notebook and start writing anyway. You can sort through your emotions about a rough time or you can record happy memories for a rainy day. 

Ways to incorporate writing into daily life

1. Start small. Jot down something funny your child said in a journal or Evernote page. Write one fun/exciting/sad occurrence of each day in your planner. 

2. Be consistent, but don't quit when you miss. Write for five minutes when you get up or before you go to bed. Miss a day? Miss 20 days? Just start again. Don't let the angst of having messed up keep you from ever starting again. (That applies to way more than just writing.)

3. Make it meaningful. Write letters to your husband, child, or other loved one. Write the statements you're not brave enough to say aloud. 

4. Send a note. Mail delights people. Thank you notes are marvelous. Learn to compliment people and speak about the beauty within them. (Even if you have to look really hard for it.)

Writing may be the spark you need to pursue a dream. Writing might leave your story for when you're gone. Writing may encourage someone else to continue on with their work. 

Do you write regularly? Do you share it with others?