Out Loud

If you know me or follow me at all on social media, you know that I am not exactly quiet about my feelings. I am definitely a “sharer,” and if we are getting gut-honest, I’m really more of an “over-sharer.”

This means that if you ask me how things are going and we have a few minutes to catch up, you will likely get a long-winded answer that will make your eyes glaze over about 10 minutes in. It also means that if you vacation with me in Florida, I will make you put down your lighthearted People magazine so I can fill you in on the horrors of sex trafficking I just learned about in the not-so-lighthearted book I brought with me. (I have very patient friends.) I have been known to confide in total strangers, and I absolutely love it when they feel comfortable enough to confide in me. And my poor, poor husband…let’s just say communication is NOT a problem in our marriage.

On the plus side, it also means that if you are on my heart, you will likely get a text or some other form of message from me because I just can’t keep that stuff to myself. If I come across a song, a Bible verse, a saying, or a prayer that makes me think of you, I will send it on—even if I only know about your life from social media. That might be where the word “over” comes into play.

For as long as I can remember, I have been a communicator. (If your mother also encouraged you as a young child to become a lawyer or TV reporter, you are probably one, too.) Like anything, this has its advantages and disadvantages. On my best day, I might encourage someone. On my worst day, I might make someone want to lock themselves inside their bedroom so they can watch mindless TV because I have emotionally exhausted them 5 minutes after they’ve walked in the door—hypothetically speaking, of course.

Honesty, vulnerability, transparency…these things come fairly easy for me. I definitely have perfectionist tendencies (ask my siblings), but putting up the façade that I am actually perfect is just way too exhausting. I’d rather just tell you my flaws upfront so we can cut through the fake and move on to real.

This, I've concluded, is just how I am wired. If I experience it, I want to tell you. If I learn it, I want to teach you. If I don’t understand it, I want to ask lots of questions and talk it out until it makes sense to me.

So naturally, when I found out about Brooklyn’s Spina Bifida, my instinct was to share. It just felt like the next right thing. I started writing on my blog (free therapy), and a few times, I also shared our testimony out loud—during a few church services, at a women’s event, and twice at a moms’ group at my church. It was all very healing and empowering, and it also helped me find perspective and meaning. Words always do that for me.

Fast forward to today. I still feel led to share about lots of things -- my feelings, our story, God’s goodness -- but life is busy and work is necessary, and I am often lost about where and how I should share. Social media is usually not the right place for big feelings, and I also understand that my children and my family may not fall into the “over-sharer” category and don’t want their lives chronicled on my blog. So instead of doing the obvious, logical thing – write in a journal that is never published – I do mostly nothing, leaving me conflicted and frustrated and full of way too many feelings most of the time. (Go ahead and say a quick prayer for my husband right now.)

A sweet friend put it to me this way:

“Everyone has a story. You just need to write it.”

Those words resonate so deeply with my heart because they remind me that this little personality trait of mine -- one that makes me feel like I’m a bit “too much” for most people -- is part my unique design and maybe, just maybe, God could use it for His glory if I’d just get over myself.  

Perhaps this nagging feeling to share is God telling me to go and share. Of course, maybe it isn’t, but I am choosing to believe that God can do anything, even through me.

Last spring, one of my steps of Faith was sending out a flyer to local MOPS groups that might be looking for a guest speaker. The opportunity totally came to me and wasn’t anything I pursued, so I walked through the door—and now I have 9 speaking engagements scheduled over the next 6 months.

Eeek!!!!

Now, the mature, business-savvy person would take this all in stride. They probably wouldn’t write about it, and they certainly would not send out group text messages with half a dozen emojis every time they got a new request. I mean, I sent out flyers and people responded—get it together, sister. But remember that I’m an over-sharer so I’ll just go ahead and admit that I am not taking this in stride, and although I am excited and humbled to take on this new venture, I am also pretty freaked out. But Paul told us to work out our salvation with fear and trembling, so I’m just banking on the fact that this is just what it feels like when God moves in your life.

I also have a few more “steps” in the works, but as someone has wisely advised me, I am being careful not to knock down any doors. This doesn’t mean I won’t work hard, it just means I am following His lead. Honestly, I think that is the only way I can do this and keep myself in check.

I do, however, need to follow the advice of another friend and get back to writing. Hence, this rambling post. I knew that if I waited for the prefect blog post to brew, it would be three more months before I showed up on here. Plus, if my goal is to be honest, then it only makes sense that I give you the full scoop on this new journey I am about to embark on.

And, really, who am I kidding… I’ve been dying to tell you all about it!!! :) :) :)

Artwork by my talented friend, Nicole.

Everything

Ever since Brooklyn started talking, we’ve had a “rule” that she is not allowed to say the words “I can’t.” If something is too hard for her to do on her own, she needs to try one more time, and if she still can’t do it, she simply needs to ask for help.

I also made a promise to myself that I would never say “no” or make the decision to bow out of something because of Brooklyn’s disability. That was never a good reason. Somehow, some way, we would make it work.

My goal has always been to show Brooklyn that she could do anything she wanted. That if there was a will, there was a way. I wanted her to see life as a constant adventure, not a constant disappointment.

This strategy has worked well for our girl, and it really hasn’t been that hard to “teach.” God has made her feisty and motivated, and I’ve never really had to push her too hard. From the start, it was clear that Brooklyn was going places, regardless of what test results showed. Her abilities far exceed any of our specialists’ expectations. She has, and continues to be, the exception in more ways than one.

As her mom, this makes me extremely proud. I love her spirit, and I love the way she approaches life. I love when specialists tell me how amazed they are, and I love that her teachers constantly tell me what a joy she is to be around. My daughter is strong and happy, and in her eyes, she has no limits.

This is exactly what I wanted for her.

There is only one little problem: She actually has limits. 

And as it turns out, so do I.

This is a lesson God has to keep teaching me, and I have a feeling it’s a lesson most of our generation needs to learn.

Somewhere along the way, we learned that we should push and push and push until we reach some level of super power and only then, maybe, can we feel as if we’ve reached success. Most of us, though, never really reach a level where we are satisfied, so we keep raising the bar, taking on more and more until we either get to the point that we are neglecting all of the good things in our life, or we break and then live in some deep sense of failure and shame.

I watch Brooklyn, and I see her determination and desire to do everything her sisters are doing. So far, I have been able to help her do those things. But as she gets older (and heavier), we are coming face to face with the reality that she and I are both physically limited in what we can allow her to do.  

We can still try—we will always try—but sometimes when there is a will, there still isn’t a way. Sometimes “no” is the answer, and you know what? That is okay.

We don’t have to be able to do everything.

And, better yet, no one expects us to do everything. It is healthy, even necessary, to set limits for ourselves. It is also healthy, even necessary, to admit that we have limits.

Because we actually can’t do everything.

This sounds a little silly, I know. Obviously, we can’t do everything. But I truly think that most of us walk around believing the lie that everyone else is, in fact, doing everything, and that somehow, we should be too.

For almost 10 years, I have juggled raising kids and working from home. The convenience and flexibility are wonderful, and I have been able to blow bubbles and help with school parties and be home when my girls get off the bus. But I won’t lie: Most of those years I ran on fumes, sacrificing things like sleep and health, and it eventually took its toll on me physically, mentally, and emotionally.

About three years ago, I pushed myself way too far, and I almost lost “it.” And by “it,” I mean any sense of joy in my kids, my husband, my work, and most everything else in my life.

I was miserable.

Right at my breaking point, I decided that I didn’t want to live like this anymore. I wanted joy in my life, and I wanted to just.stop.pushing.

That required the hard work of adding necessary things to my life and letting go of some of the less necessary things. None of these steps were easy for me, and in all honestly, I did it more for my family at the time than for myself. I knew they deserved the best parts of me, and I needed to find those things again.

So I took action. I went and saw a counselor for a few months to talk through some hard things. I also hired a babysitter who allowed me to get my work done during normal hours of the day. And as much as I am still a little embarrassed to admit this, I have (more recently) hired a cleaning crew to come to my home once a month because I just can’t get to it all.

I also started working out again, seeking more time with God, and going to bed at a normal(ish) hour. I started saying “no” if I was asked to take on something I knew was too much, even if there was a nice paycheck attached to it.

I realized that at the end of the day, I only had 100% to offer, not 10,000%. I realized that saying yes to something took from something else. It’s simple math, of course, but somehow in the midst of push, push, push, I forgot how to add—and subtract.

Here’s the truth: If you think for one second that someone in your life (or on Facebook or Pinterest) is doing it all, it just isn’t true. They either have help, or they are probably running on fumes and/or miserable.

I know not everyone can afford to hire a cleaning crew or turn down a paycheck. And trust me, we have been there. But I think all of us could probably afford to say “no” a little more, and I’m almost certain most of us could use a few more hours of sleep.

Saying “no” does not equal failure. A strong person knows herself well enough to set limits and abide by them. She is confident enough to admit weakness and ask for help from God and from other people in her life.

In this new season with Brooklyn, I can see that this is something I am still working through. My instinct is to always push. I want Brooklyn to achieve far more than this world expects from her—and far more than she even thinks she’s capable of—but I also don’t want her feeling a deep sense of failure or shame when she can’t do something. As I learned firsthand, this is no way to live.

The balance is tricky, and she may have to learn the hard way, like I did. In fact, I am already watching my older girls reach limits in their own ways, and several times I have went to bed in tears over their disappointment.

Limits are hard, especially when it comes to our children. We want everything for our kids.

But everything just isn’t possible.

My job, as their mom, is to always encourage them to try, but more importantly, to provide a soft place for them to land when they reach a limit. I need to remind them that “no” is okay and that limits are good. Disappointment forces us to grow in ways accomplishment never would have allowed. 

Above all else, I need to remind them that they are not loved because of what they can or can’t do, but because of what Christ did for them. Their worth does not come from this world or their own abilities. It comes from God and His ability to work all things for our good and His glory.

I also need to provide space in my life to remind myself of the same truth. That means saying “no,” and it also means not feeling bad about saying “yes” to myself once in a while.

There is a reason most of us are exhausted. There is a reason many of us are living in shame. We are doing too much. We are forgetting that limits are a very important part of growth. Instead of hitting our knees, we are climbing ladders so high that they are buckling underneath us.

We need people to lean against. We need a solid foundation to stand on.

As it turns out, we weren’t designed to do everything.

That, my friends, is what God is for.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

2 Corinthians 12:9

In Faith

It's been such a long time since I've written here, I barely know where to start. It seems odd and awkward to dive in without some sort of "I'm back" declaration, but history proves that may or may not be true. This time, though, it's different. Or at least I think it is different.

I hope it is.

Here's the truth: I want to write here. In fact, I do write here -- in my head -- almost every day. I have posts floating around my mind and my heart that get hashed out as I drive or in the shower, but they never seem to make it on the screen for many reasons. A lot of those reasons revolve around time, energy, and children that want to be fed, but after a year of self reflection, I have realized the real reason is fear.

Fear of failure, fear of not being enough, fear of judgment, and I'll just go ahead and throw it out there:

Fear of doing what I think God is calling me to do. 

Wow. It feels good to admit that.

For about 3 years now, I've felt God's nudge to write and speak for Him. I've never shared that on here because it made me feel uncomfortable. In fact, the whole idea made me uncomfortable.

Part of that is because I already have a writing career. I have worked hard, built up a steady stream of clients, and even took a few risks -- all of which have paid off. Surely, God wouldn't want me to give all of that up.

And then, of course, there is the fact that I feel totally unworthy of the job. Who am I to be teaching, preaching, or pointing anyone else to God when I can barely get my Bible study done or go 20 minutes without losing it with my kids? Anyone peeking through our windows would know right away that I am no different than any other mom just trying to get through the day. I yell too much and often drown my sorrows in a jar of peanut butter. My kids run wild and throw Barbies at each other. Our family is more likely to watch a movie together than to sit down and play a game because it is only then that there is NO FIGHTING. The struggle to get anyone around here to listen or help or care sends me to my knees multiple times a day. Clearly, this does not describe a woman with any sort of authority.

Perhaps my biggest hang up, though, is that others might also see me as unworthy. Or, worse, that they would classify me as self-righteous, narcissistic, or hypocritical...maybe all three.

At first, I allowed these fears to silence me. I stopped writing because deep down, I was afraid that all of those things were true. What were my motives? Was this really a "calling" on my life, or was it my own selfish dream? How do you know for sure what you are "meant" to do?

God allowed those questions to eat at me enough to finally do something about them. Even though I stayed silent, I have spent the last year praying and really seeking God's direction. I've done a lot of hard heart work that has been both exhausting and liberating. I have opened old wounds, opened my Bible, and opened my hands to both release and accept God's plan for my life.

And so here I am.

I am not here because I am qualified or because I think I am special or to become famous. I am here because I think I am supposed to be, which is really just another way of saying I still have no clue what I am doing or where I am headed. I am just showing up. That, as shaky as it feels, is my plan.

I have decided that Faith requires you to step out, even when you don't see the path ahead. Faith, if it is real, is uncertain and scary and risky. It is making the choice to believe more in who He is than who we aren't.

So little by little, I am taking steps. This was one of them, and I'll be sharing more as I go.

I may fail. I may be judged. I may even do it all wrong. But I will do it in Faith and that, I know, means I am already on the right path...wherever it leads.

When the Enemy Whispers, “It’s Your Fault”

I know the right answer. I know what I should feel. This was the plan. His plan. I had nothing to do with it. I couldn’t have prevented it, and I couldn’t have changed it.

She was born this way, and she is beautiful just as she is. She is fearfully and wonderfully made.

This I know full well.

Yet there are days, nights, when the enemy sneaks in and whispers, “It’s your fault.” Most days, my armor is strong and I deflect the lies with Truth, in my soul and if necessary, out loud.

But there are days, nights, when my humanness takes over and I wonder if he is right. If there is something I could have done had I known. Or, worse, if this had to happen for me to trust my Savior fully.

My daughter is four and amazing and fighting the obstacles life has given her with an inspiring mix of innocence and drive that only He could have placed in her. She takes this life and runs with it, even if she needs a little help to get there. Her spirit has changed me forever. I have grown, surrendered, and embraced this new life – this life of a special needs mom – and I am better for it. In ways I never expected, I am better for it.

For this, I am grateful, but a mama is never really thinking of herself. So in the midst of all of the blessings, there is a small voice that reminds me that my gain is her loss. That some of the greatest victories of my soul came with a price paid by my own daughter.

Right now, she is joyful and content, but I have seen her noticing the differences. I can see the questions stirring around in her head, not quite able to find their way out. With a cracked voice and heart, I sing His promises into her soul, reminding her that she is loved and that her worth is found in God and His special design for her. That she is whole in Him. I believe it and she does too, for now. But she is only four, and I know this journey –- one that has more to do with her heart than her body -- has only just begun.

So in those moments when dark murmurs sneak in and my flesh fails, I enter a space I know He is desperately trying to cover. I crack open the door, and I give in to the question that is always lurking.

What if?

What if I had known I was pregnant...acted like I was pregnant. What if I took the prenatals they said could have prevented it all? What if I had more faith and didn’t need brain surgeries, physical disabilities, and a life of unknowns to fully rely on a God I always knew was there?

Could the blessings of a mother have been found without the sacrifices of her daughter?

The heaviness of it all forces me to my knees, and like always, I find the answer –- the mystery of the answer -- at the foot of the cross, and I wonder if He asks Himself the same question.

Could the blessings of a Father have been found without the sacrifice of his Son?

The mystery of the answer, it has become our connection; a connection that is deeper than it ever was, leaving me with an emotion somewhere between utter humility and eternal clarity. It feels both wrong and right to compare our stories, but then I remember that He intended it to be all of our stories.

Not the pain, but the victory. It is His. It is mine. It is hers.

It is all of ours.

So I push out the murmurs with the powerful, deafening Truth, and I slam the door, hoping that one of these days it will stay shut, locking out the lies and forcing the whispers into silence.

Or that one of these days, they will finally fall on deaf ears.

Answered Prayers!

I apologize that I didn't post this sooner...it's been quite a week. But I have some good news about our Brooklyn! Thanks to our amazing God, we were able to CANCEL Brooklyn's shunt surgery that was scheduled for this past Wednesday. Several tests on Tuesday showed that God heard our prayers. In fact, Brooklyn's MRI showed a slight DECREASE in spinal fluid! Thank you, Jesus! Although we are still not 100% positive that Brooklyn's shunt is fully functioning, the decreased fluid in her spine and stable fluid levels in her head are good indicators that our girl is doing just fine. She also continues to show no major symptoms. Our neurosurgeon feels strongly that intervening now would cause more harm than good, and Jeff and I agree. As much as we want to be proactive, Spina Bifida is more of a "wait and see" journey. We won't lie... this is the hardest part. But we are following what Brooklyn's body is telling us, trusting our neurosurgeon, and putting our faith in the ultimate Healer. We believe with all of our hearts that He is guiding our journey and will make it clear if and when we need to intervene.

Brooklyn also had a series of urology tests this past week. The preliminary results look good, but we aren't quite out of the weeds yet. We will meet with our urologist this week to make sure there haven't been any major changes in Brooklyn's bowel or bladder. If there have been major changes, we could be dealing with tethered cord surgery instead of shunt replacement (worst case scenario)...but for now, we are just thankful for the good news we received this week. We will keep you posted as we know more.

Thank you so much for all of your prayers! They are powerful!!!

Waiting

Many of you have been checking in on Brooklyn, which touches me more than you know. And since so many of you are praying, I wanted to give you a quick update.

Overall, Brooklyn is doing well. Right now, we are in wait and see mode until her doctor appointments on December 9. That is when we will do more MRIs and scans to see if we need to perform the surgery on December 10.

Some good (helpful) news... she recently had an eye appointment that confirmed NO pressure behind her eyes, which is a really good thing. If there was pressure, we'd definitely have to intervene with surgery. Knowing that there is no pressure building in her head was a huge relief and gave us some peace of mind as we wait on the Lord this next week. It also helps that our little rock star is as spunky as ever and seems to be feeling just fine. I keep telling myself that is she is joyful, I should be too! Her smile and all of your prayers are helping us stay strong.

We are so blessed to have a community of prayer warriors going through this with us, and we promise to keep you posted as we know more!

Move

If you think of it, can you say a prayer for our girl? We have been questioning whether or not her shunt has been working for some time now, and a recent series of tests revealed that her shunt is indeed not draining the fluid properly. We have adjusted the settings as a last resort, but if there is no improvement over the next month, we will have to intervene with surgery. My heart and my head are wrestling with fear and trust, and so I know the only helpful thing to do right now is to pray and to ask for prayer.

We know this place -- this waiting -- but it isn't any easier this time around. Not when she is 4 and talking and such an enormous part of our lives. Not when we have to hope that everything is okay, yet be aware just in case it isn't. Not when she is old enough to tell me she's scared.

It's been a good, healthy 2-year run, and I know there are always bumps. Always. This one just feels a little more like a mountain.

But we know what to do. We cling to the Truth, we ask God to move that mountain, and we try with all our hearts to believe that He will.

"Truly, I say to you, whoever says to this mountain, ‘Be taken up and thrown into the sea,’ and does not doubt in his heart, but believes that what he says will come to pass, it will be done for him. Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours." Mark 11:23-24 ESV

We Need Your Help

Okay, friends. I have a favor...and an opportunity. One of the biggest heartbreaks in our journey has been watching Brooklyn get left out while other kids run off and play. At our home, at play dates, at church, at school...it literally makes my heart ache and my stomach drop. Every.single.time. Yes, exclusion is a reality when you are physically limited, but we can make it better. I have to believe we can make it better.

A few days ago, I posted a photo of Brooklyn and the girls playing at an all-inclusive (wheelchair-accessible) playground. It is located near our home and can only be used after school hours, but it is awesome. ALL THREE OF MY GIRLS loved it. After I shared a photo on Facebook, many of our friends liked the photo and agreed that this should be all parks. One of our new Spina Bifida friends also saw my post and ended up going there a few days later with her 6-year-old son who also uses a wheelchair. According to her, this was the first time she watched BOTH of her sons enjoy a playground TOGETHER. THE FIRST TIME. It's just not right, friends.

While I really feel ALL playgrounds should be inclusive, I know that change starts small. One playground at a time. And here's where you come in. We have an amazing opportunity RIGHT NOW to support the building of a BRAND NEW all-inclusive playground right here in my community. Thanks to my friend Keith and all the folks at the Lincolnway Special Recreation Association (LWSRA), Brooklyn and all of her friends are going to get brand new place to feel included and, even better, TO HAVE FUN!! To do one of their biggest kid jobs safely and ANY TIME THEY PLEASE!

So I am asking you to donate. I am asking you to skip the Starbucks (maybe 2!) and help. As a family, we haven't really raised money for our cause yet. I've been waiting for God's nudge, and I am getting that nudge right now. We do have plans to do something else very soon (STAY TUNED!), but this LWSRA project is just so important that I am putting all pride aside and asking you to make a difference -- for Brooklyn and for so many other deserving kids out there.

I have already put my money where my heart is, and I hope you can do the same. No amount is too small, and you can even make a monthly donation. The goal is $300,000 and as you will see, we have a LONG way to go. But I have faith that we can do this. I have to believe we can do this.

Don't all kids deserve the right to play?!?


(You can donate by clicking here.)

Shine

Today is one of those days I feel like God gave our family a secret. A secret that is available to anyone who wants to pay attention, but a secret that we get to live and breathe and feel in the depths of our souls.

Today, I sat in an audience and watched my baby dance.

On a stage.

In all of God's glory.

The baby I cried for and grieved for and prayed for. The baby I feared would be cheated out of this life.

Yet here she is, dancing.

Dancing with costumes and lights and applause and pink roses. Dancing with family and strangers and special friends right along side her, cheering her on.


My girl is not being cheated. She is blessed, and even more so, she is blessing.

I have noticed a trend in the special needs world lately to "prove" to everyone else that our lives are just like yours. That our children and our homes are no different than yours because somehow "sameness" is a goal we are trying to achieve to gain acceptance for our children.

Well, I'm sorry. I'm not one of those people. Days like today remind me that those of us that have children with special needs do not live the same lives that you do. And I'm not talking about the doctor's appointments, the life-threatening worries, or the therapies. I'm not talking about the sibling challenges, the IEPs, or the surgeries. I'm not talking about group homes or socialization or marriage struggles.

I'm talking about a secret we've been given. A secret we can't quite wrap our minds around, but one that we get to hold on to and enjoy every so often.

When I see my daughter -- a child they told me might never walk or live a fulfilling life -- when I see her up on a stage dancing her sweet heart out as best as she can, I feel like God thins the veil just a little and I get a small taste of what this life is really all about.

In these moments, I see that this life isn't about perfection or what you can or can't do. It's not worrying about standards or judgement or the world's expectations. It's about embracing and enjoying what you have RIGHT NOW.

It's loving life simply because you are alive.
 
And in these amazing moments, I don't just see this Truth. I get to live it.

I would be lying if I said that our "new normal" feels normal at all. It just doesn't. Life with a child with special needs is richer, deeper, fuller. It is physically exhausting and emotionally draining, but it is anything but the same. I am anything but the same.

Dare I say... in some ways, it is better. I am better.

Little hands brushing teeth and opening refrigerator doors are no longer mundane tasks, but evidence that hard work, Faith, and perseverence can make the impossible possible. Dirty shoe soles and sand grains stuck in leg braces are no longer annoyances, but reminders that mess is an important part of enjoying life. And awkward hops and banging metal across a stage floor are no longer interruptions, but a shining testament of what God can do through every life He places on this earth.

We are all valuable in His eyes. Every.single.one.of.us.


As I sat there in the audience today, I swear I saw God beaming right out of my little girl. His work -- His victory -- was right there in front of my eyes, and I got to experience it in a way I could never really put into words, which only proves to me that it is His work.

My daughter, she is special. Our life, it is special. Not because of our "needs," but because we are learning that the secret to this life is not about wanting something else or something more. It's realizing that what you have been given is more than enough -- and then letting it shine for the whole world to see.

On Trial

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds." (James 1:2)

I came across this verse twice this morning. TWICE. Once in my own devotional time and then again in the girls' devotional. When God puts something in front of your eyes not once but twice -- all before 8:30am -- it's pretty safe to assume that He is trying to tell you something.

Right now, I am struggling with raising one of my children. Like really struggling. I am pulling patience from places that are not of this world because I am fairly certain THERE IS NOT ENOUGH PATIENCE IN THIS WORLD.

And regardless of what Pinterest and Facebook try to tell me, I am somewhat confident that I am not the only one in the midst of this trial. Can we all just admit that we aren't sitting around crafting and making homemade play-doh all the live long day? I'm pretty sure most of our days and nights include getting snacks, breaking up fights, tempering sassy attitudes, getting more snacks, finding new and creative ways to say, "CLEAN UP YOUR MESS!," and, yes, more snacks.

Listen, we all love our kids. We do. But I think the majority of us will agree that a large portion of our parenting experience is a TRIAL... especially if (a-hem) one of your children has a strong will to do everything the exact opposite way than you would prefer. (And, trust me, I realize that I (we) have a long way to go.)

But then there's that verse...

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds."

... and I reminded that there has to be joy wrapped up in this trial. Yes, our children in and of themselves are a joy, but what about that scary, hard part of raising them? The part that feels like constant fighting, constant discipline, constant reminding -- none of which seem to be doing any good. Is there joy in that part?

Today, I am choosing to believe that there is. Not only because God said so, but because when I take a step back and consider the bigger picture of this trial, I see that yes, it is a joy. Raising my daughter in His ways is a joy and even more so, a privledge. The fighting, the discipline, the reminders -- they are creating character in that little soul, knowledge in that little mind, and (hopefully) compassion in that little heart. This current trial -- one that is squashing out every ounce of confidence I once had in my own abilities -- is critical. It's the hard part, but it's the part that God entrusted to me -- her mother -- so that together, we could bring up this child in His image.

So often I thank God for the gift of my children, but today I'm thanking Him for the gift of raising my children. It isn't easy -- and right now, it feels downright impossible -- but today He reminded me that it is a blessing. One that I can consider pure joy.

Possible

I have a billion and one things I should be doing right now (I am leaving to go on a campout in less than 2 hours!), but I wanted to take the time to write because I want to remember this day -- this feeling -- every time I start to lose hope. This won't be eloquent or poetic, but I don't even care. This isn't about me...it's about God.

When we first found out about Brooklyn's diagnosis, He placed an image on my heart. As I wrote here, that image included a little girl walking with arm crutches. But after years of doctor appointments, muscle tests, wheelchairs, and all sorts of other "reality checks," I admit that I let go of that image. And I was good with it. I was disappointed, but I accepted it and was ready to move on.

But over the last few months, I have seen Brooklyn progressing quickly and started to feel a small glimmer of hope that perhaps my image was possible. And then today, during physical therapy, Brooklyn's therapist confirmed that crutches are a very real possibility for our girl. She won't likely have the coordination to try them until she is 6 or 7 -- so we'll have to be patient -- but it is extremely possible.  My image -- the image He gave me -- is possible.

Praise God, it is possible!


Interestingly enough, all of this happened immediately after I took some small steps of faith into some unknown "waters."  Things are brewing and God is showing up and telling me very loudly to trust that HE CAN DO ALL THE THINGS.


ALL THE THINGS, friends.

I am humbled, encouraged, and in awe of God's faithfulness. While I often hesitate to share this kind of news because I know things can change, right now, hope is living and breathing and walking around here, and I just couldn't keep it to myself.


To God be the glory!

"Jesus looked at them and said, 'With man this is impossible, 
but with God all things are possible.'" (Matthew 19:26)

In the quiet

You see me, running and chasing

a world full of distraction and judgment

my heart torn and shameful; my words quick and angry;

my hands clutching too tightly to receive

You see me, worrying and forcing

a life that can’t satisfy or salve

my head questioning and doubting; my soul searching and longing;

my joy stolen by expectations

You see me, in all my mess and mistakes and futile attempts

to earn a gift I've already been given

my blessings countless and merciful; my sins forgiven and forgotten

my worth bound in your grace

You see me, and you wait

for my heart to soften, for my hands to open

for my soul to quiet

And you whisper,

You are loved.

Saved

Today, during lunch, Brooklyn asked me a question that stopped me in my tracks. I had been washing dishes -- those annoying ones that can't go in the dishwasher -- and thinking about absolutely nothing. I could hear the crunch of Brooklyn's carrot and feel the warm suds on my hands, but my mind was at rest. This may not seem like a big deal, but for someone who overthinks and overanalyzes and always has something on her mind (just ask my hubby), that in itself was a big deal. But what was even more amazing was the question that came out of my daughter's mouth:

"Mommy, why are you smiling?"

And you know what? I couldn't answer her. I didn't even know I had been smiling.

For the last few weeks, I have been spending a lot of time digging around my soul and doing some much needed work. I have been drowning out the world and seeking more time with God. I have been letting go of myself and offering my everything to figure out what is next for my life. I believe they call that surrender.

I am still digging, still praying, and still figuring it out, but in the process, I have felt an amazing sense of contentment that I have not felt in a long time. In some ways, I am emotionally exhausted, but at the same time, I have this overwhelming feeling of peace and security that comes from knowing I am living for something bigger than myself. That the world and its approval no longer matters. I am learning who I am, what I was made for, and where my heart belongs. I believe they call that joy.

Joy. It is such a powerful word. To me, it represents so much more than happiness. Too many people treat happiness as a destination, but it's not. It's a fleeting emotion. But joy...to me, joy is something to strive for. It is learning to live this life with hope, compassion, and love, regardless of the circumstances. To walk the walk and talk the talk with such grace that it flows freely and naturally. To smile without even realizing it.

A few months ago, someone shared this translation of Matthew 11:28-30 with me, and I just can't stop reading it:

“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” (Matthew 11:28-30 MSG)

Learn the unforced rhythms of grace... to live freely and lightly....

Yes, that is what I want. That is what I am seeking. More than answers, more than a fleeting sense of happiness, more than this world, I want those things, and I think I am getting closer. The more time I spend with Him -- the more I am distracted by Him -- the more I am enjoying this life.

I believe they call that salvation.

Ashes

It is late – well past bedtime – and we are at church. Jeff has been out of town on business all week, and my mommy patience is wearing thin. My two older girls – the ones the world tells me should be meek and mild and obedient – are anything but and they are barely making it through the service. Or maybe I am barely making it through the service. Arms tugging and hanging, too-loud-whispers begging for bathroom breaks, busy hands digging through my purse… my heart wrestles with patience and frustration as I try to find a peaceful way to manage them while receiving the Message that is clear tonight… “Create in me a pure heart.” The irony is not lost on me.

 

I feel a breath of relief sneak out when the service ends, my tension subsiding, until Emma asks if she can have ashes on her forehead. Kendall catches on quickly, and they are both bouncing and asking and my head is spinning. Our church has never done ashes before – this was the first time – so I don’t know if they are “too young” or if that even matters. I end up settling on “yes” because I don’t have the energy to say “no” more than once. So we all receive our ashes and walk out the door.

The night, unfortunately, only gets crazier from there, and I find myself in an all-too-familiar scenario… smiling and waving and attempting to appear calm as I hold quick conversations with friends and simultaneously search for my girls – one on wheels and two that are purposely hiding and running from me. The more I give them “the eyes,” the more they giggle. I am now literally chasing them, and I know that any efforts to appear calm are futile. The gig is up.

As we pour into the truck, snow boots stomping, doors slamming, "the church lecture" begins. It’s the same lecture I give every Sunday morning, and the one I am sick of repeating because it clearly doesn’t penetrate. The words come out stronger than they should; my tone harsh and condemning. The apologies and sniffles from the back seat fill my ears, but the pure heart I asked for just isn’t there. I am angry and embarrassed, and we drive the rest of the way in silence.

When we arrive home, obedience comes in an attempt to win back my favor. Teeth are brushed and pajamas are on in record time, but before tucking them in, I make a quick pit stop in the laundry room. Exhaustion rises up as I pick up scattered gloves and scarves, but then I quickly catch my reflection in the mirror. And that's when I see them... the ashes.

They are black but not permanent, reminding me of the sins I am going to try and purge the next 40 days to honor the Savior who died for me. They are there to encourage me to turn those sins into beauty – the easy sins and the secret ones and the ones I can’t seem to shake and find myself apologizing for again and again and again.

They are also, I now remember, the same ashes my daughters received. The same ashes His daughters received.

Oh, Father, forgive me.  We are the same.

Humbled, I re-enter their room with the pure heart I asked for, and I embrace and apologize and explain with more love than the first time. We say prayers and repent, and while it is not perfect, it is better. Emma is at peace, but Kendall is still upset. I remind myself that dwelling is not always helpful, so I say goodnight and turn off the light.

As I head for the door, Emma asks for one more kiss.  Mustering up one last ounce of patience, I walk over to her bed and bend down to kiss her forehead, only to realize the ashes she received are no longer there. She has already wiped them clean.

Four Years

Today is "the day" -- or, really "that night," -- we found out about Brooklyn's diagnosis. I always know when it's coming, but I always have to look up the date. I think that's a good thing... remembering but not obsessing...reflecting but not reliving. It's all good for the soul.

What's funny is that most people would probably think that I count this day as a turning point in my life. But, honestly, I don't. The turning point was the next morning. "That night" I was vulnerable and heartbroken and engulfed in grief, but the next day... that was when God gently unwrapped me from His arms just enough to open my heart to hear His promise: "It's going to be okay." And if you have followed our story at all, you know that He has kept that promise.

I realize that there is an elephant on this blog. I've tried to bring it to light before, but often stopped out of fear. But interestingly enough, today is the day I feel like it's time to talk about it.

Many times I have talked about "God's plan" on this blog. How we would trust it and follow it. But did God actually plan for my child to be paralyzed? Did God really want my child to be disabled? How could that possibly be His plan?

I honestly don't know the answer to that question. I think God desires us to be whole and perfect, but in this lifetime, that's just not possible. That's what Heaven is all about. I also know He hates suffering and that He loves my daughter far more than I ever could. He also loves me and wants me to go through this life full of joy and hope. These things I believe with every ounce of my being.

I have my own thoughts about the "why" and "how" Spina Bifida was brought into our lives. But every time I find my mind going there, I have to remind myself that Faith isn't about having the answers. In fact, it's the exact opposite. It's not even about figuring out His plan. It is about trusting in His outcome and then waiting as He unveils His goodness and glory in your life.

When you look at our little girl, I truly hope you see that goodness, that glory. I know I do. Even though the plan is still unclear and one I wouldn't have chosen, there is still happiness and hope and beauty and above all else, love.

So.much.love.

That, my friends, is God's plan. For Brooklyn's life, for my life, and for yours.


Four years ago, I had no idea where we'd end up, but I knew that with God, it was, in fact, going to be okay. He never said it wouldn't hurt, but He did tell me that with Him, there can be joy. Who else could turn something so devastating into something so absolutely good?!

That night, as I sat in the darkness, sobbing and pleading with God, I asked Him THE question:  

"Why?"

Almost immediately, I remembered Jesus. His own son...on the cross. Perfect and whole, yet tortured and killed. It makes no sense to us why God would choose this path for His son and, really, for Himself. But we all know what came out of that. The ultimate ashes to beauty story. Surely if He could turn the ultimate suffering into salvation, He could turn our story into one of beauty.

So far He has done just that, and I have no doubt He will continue to do so. That is the plan I believe in. That is the plan I speak of on this blog and the one I will stand up for and tell the world about for as long as He allows.

Whether you believe in God or not, He is there. He is working in your life, and He offers you the same plan that He offers me. The choice is whether or not you let go enough of yourself and your plan to see it, to embrace it, and to live it.

Four years ago, I chose to accept His plan, and it was the best decision I ever made. I didn't choose for my daughter to have Spina Bifida, but I did choose God. And by doing so, I also chose joy and hope and all the good things this life can offer.

Even when our plans change, God is good. All the time, He is good. In fact, that is about the only thing we can plan on.

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."
John 16:33

Grateful

With two arms planted firmly on the handles of her walker, she pushes herself up. Again and again. I  look down at her feet.

She is jumping.

The smile on her face is as contagious as her giggle, and I find myself reaching for my phone to capture this moment. A moment that feels wonderful and victorious.

She is jumping.

I look at this little three-year-old -- full of life and personality and plenty of sass -- and part of me wishes that I could go back to that new Mom of three who was so full of fear and uncertainty. The one sitting in the waiting room, desperately searching for the nurse to tell her that her baby was awake and in recovery. The woman carefully bathing her child so that she wouldn't get water in her leg casts. The Mom wishing she had x-ray vision to prove that a shunt was working properly. The one who grieved over the harsh reality of a wheelchair...

I want to tell her that it is going to be okay. That most days, it will seem like life is just as it should be. That sometimes jumping looks different, but that different is okay. Different is good. Different can be beautiful.

I want to tell her that life isn't black and white, but it isn't gray either. It is colorful. It is walking with braces. It is rolling in a wheelchair. It is scooching across the floor. It is jumping with a walker.

And although what is happening today might not be happening tomorrow, there is still joy and a whole lot of love and a life that is more fulfilling than she ever dreamed.

I want to tell her that those three sisters she worried about...that they would be happy and in love. That they would still wrestle and fight but care deeply and help without hesitation. That their lights would shine a little brighter when they were together.

But another part me wonders if that Mom would have really appreciated the journey had she seen the outcome. I wonder if she would have felt the joy of the small victories had she not experienced the trials. If she would have seen the beauty, if not for the pain.

I look back, and I know that this path isn't one I would have chosen for that Mom or for that precious little baby. But I also see the many, many blessings that came out of all of it, and when I realize that, this Mom -- the one right here, now -- can only be grateful.

Thank you, God, for today. The pain of yesterday isn't gone and the uncertainty of the future still lingers, but today...today, she is jumping. 

Thank you.

The Year of the Coach

We put way too much work into this year's Halloween not to post of few pix. I looked up several wheelchair ideas on Pinterest a while back, and once Brooklyn declared she wanted to be a "pink princess" this year, well, I knew this was going to be The Year of the Coach. :)

Thankfully, it wasn't as hard to make as it seemed, and it was actually very inexpensive. I am also super grateful that the rain managed to stop long enough to give the kids a good hour of trick or treating. It wasn't looking good earlier in the day.

So there you have it: a pink princess and her carriage -- and two big sisters who were more than happy to make sure she got all of her treats!

Hope everyone had a great Halloween!

Harder

In the early days of Brooklyn's diagnosis, I wrote. I wrote to heal, and I wrote to release. And I only wrote when I felt led. Somewhere in the middle of that, I started to feel obligated to write, and I hated that. I already have a writing job. This...this was for me. It was also for my family and anyone else who cared to read it, but, really it was for me. For a while, I stopped writing on here because it wasn't helping anymore. In fact, it was making everything confusing.

But today I am going to write for me again. Because I am ready, but mostly, because I need to.

As most of you know, Brooklyn turned 3 years old last week. As in, THREE YEARS OLD. That absolutely blows my mind. It amazes me how far we've come -- how far she has come -- and how life-changing and inspirational these last few years have been. So many questions have been answered; so many unknowns now known. Some of those answers have supplied more joy than I have ever experienced, but some of those answers have been heartbreaking. Some prayers have been answered the way I had hoped, but some of them have been answered in ways I have yet to understand.

It's interesting the way life goes on for everyone else after your world has been rocked. That is just the way it is, I know, but sometimes it is hard to come to terms with that fact when you are the one still dealing with the aftershocks. Most days, you can handle it and maybe even feel blessed by the impact, but there are days -- sometimes, weeks -- when the impact feels a little heavy and scary and maybe even a little unfair.

We are gearing up for Brooklyn to start preschool in a few weeks, which means school supplies and school clothes and lots of excitement. But it also means buying special leggings that will accommodate her braces, special backpacks that will securely attach to her wheelchair, and paperwork that requires me to write things like "paralyzed," "disabled," and "IEP." It also means preparing my heart for the moment when my 3 year old rolls up to a bus and waves goodbye -- a moment that feels way too soon, yet is necessary for the life I want for her.

That is hard.

And as I come to terms with all of this, she, too, is coming to terms with it. We have been talking a lot about her being a big girl now that she is 3 years old. We have ditched the binkie at night and getting ready to transition to a new big girl bed. There has also been lots of talk about big girl preschool and even a big girl dance class. All good stuff.

But then last week, she asked me on two different occasions if being a big girl meant she could stand all by herself..."like Emma."

Oh.my.heart.

Then, this morning, she said this to me...

"Mommy, can you get it for me? I can't reach it. I can't stand."

As her words -- "I can't stand" -- played over and over in my head, I found myself responding, "Yes you can, baby. You just need a little help."

But you know what? She can't stand. I know that. My heart knows that. And, now, she knows it too.

That is hard.

I have spent the last few years trying to pretend that this was getting easier. That I could do this...that we were going to rock this. But it isn't easy. It is hard, and honestly, it is getting harder. Physically and emotionally -- for me and for her -- it is getting harder.

And for some reason, I just needed to write that today. My heart needed to admit it, and I needed to also express it as a reminder to myself that saying it is getting harder doesn't indicate a failure on my end...it just is what it is right now. History has shown me that God will get me through this, and in the meantime, there is no pretending necessary.

Like any mother, I am doing the best I can to give Brooklyn and Emma and Kendall what they need. And like any mother, I am also going to have seasons when it feels harder. Those seasons will come and go... and they will come and go and come and go.

Life doesn't usually get easier. I think you just get a little better at it with every step you take. Some steps will come easy, and some steps will take more effort. Sometimes you will fall, and sometimes you will come to a point where those steps are just too hard. As my rock star is teaching me, in those harder moments, you simply need to ask for help. That doesn't make you any less strong or any less able; it just makes you determined and that much closer to your destination.

We will get there, I know. She will get there, I know. But until then, will you say a little prayer for us as we navigate this tougher terrain? I coveted your prayers in our early "hard days," so I am humbly asking for those prayers again today.  Because I am ready to accept them, but mostly, because I need them.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."
Philippians 4:6 NIV

Jesus

I am starting fresh. I haven't written for a while, and there are lots of reasons for that. But, lately, I feel led to start sharing again. However, I don't want to share in a way that is self-serving or in a way that disrespects the privacy of my family. I have come to realize that is not what I want. And, really, those aren't the reasons I decided to start writing on a more personal level.

When I first decided to start sharing our testimony, I made a promise to myself and to God that it would be to glorify Him. I pray that in some ways, I did that. But I know that in other ways, I fell short. My intentions were mostly good, but they were also clouded with motivations that weren't entirely pure. When I realized that was happening, I stopped writing.

But I know now that I have to stop letting fear hold me back. If this is really what God wants me to do, then I need to just do it and trust. Even if that means someone won't like what I have to say. Even if it means someone will slap a label on me.

Honestly, I still don't know what all of this means and if it means anything, but I wanted a clean slate and that includes making sure we are all on the same page.

This blog has talked a lot about God. It has talked about prayer. I have even mentioned Satan (gasp!). But I have also written a lot of His and Him and He and thrown a whole lot of other capital letters out there that may have distracted from the fact that most of the time, I was really talking about Jesus.

Jesus.

It feels good to write it. If I am being honest, as more people read my blog, I wrote around that name. I did it in a way that made me feel like I wasn't denying my faith, yet I realize now that no matter how I creatively hinted at my faith, I wasn't exactly telling the whole story. Because, friends, Jesus is the story.

A few months ago, I decided to write a personal essay for a mainstream parenting magazine about my pregnancy experience with Brooklyn. It wasn't hard to write, especially since that is what I do for a living. As I wrote the essay, I purposely left out the details of my faith because as a journalist, I knew I had to write for my audience. So, instead, I focused on the mothering aspect of my experience. I wrote about the pain of Brooklyn's diagnosis and only briefly mentioned that my faith helped me get through it all.

After I finished writing the essay, I wasn't happy with it. I shared it with my Mom and even let her friend read it so I could get some real feedback. Yet even as I waited to hear their reactions, something in me knew I was never going to submit that essay. At first, I convinced myself that it wasn't good enough. Then I decided it would be exploiting my family. But now, after much prayer, I know that the reason that story fell short is because I left out the main character. I no longer want to do that.

Just to be clear -- Jesus is my Savior. He is the reason I have a testimony to share. He is the reason I have hope and joy and love in the midst of my heartache. He is the main character in my story, so He will be showing up here -- on this blog -- more often.

I know this might make some of you squirm in your seat a little. It might make you uncomfortable. It might make you roll your eyes or make assumptions about me and my life. But I can't let fear or rejection hold me back from what I think I am supposed to be doing here.

I don't pretend to know all the answers. I certainly don't pretend to be perfect. But I do have Jesus, and if there is one thing I can say for certain, He is all I need. My hope -- no, my prayer -- is that I'll get to tell you about that some time.

In Him,
Lisa

It is Well

You know when you build something up so much and expect it to be something big, but then, when it really happens, it ends up being nothing like you expected?

Well, that is exactly how Thursday was. Don't get me wrong, it was something big. I just never expected to be so excited, for the girls to be so excited, and to feel a wonderful rush of joy when my baby sat in her wheelchair for the very first time.

Yes, joy. Not the high-on-life kind of joy, but a content, deep-down realization that it is more than okay.

It is well.

Our "wheelchair guy" (not sure what else to call him) was about 45 minutes late for our appointment, so we were all pretty anxious. But once he arrived, the girls were peeled to the door, jumping up and down at one point, and yelling out to him on the driveway. The poor guy couldn't even get through the door without us physically moving the girls out of the way.



He finally made his way in, and that's when I saw it -- her name, embroidered in pink right there on her seat.  What a beautiful, thoughtful surprise. We never asked for it, but it was a personal touch that made us instantly fall in love with this vehicle that was going to change our girl's life. (The metallic fuchsia accents didn't hurt either.)



Then our wheelchair guy tried to fit Little Miss, and the booger couldn't even sit still. "I try, I try, I try," she kept saying. She knew just what to do and wanted to go. He even put down the breaks, but she figured those out, too. At one point, Jeff walked out of the room and when he came back in, she confirmed what we all could clearly see... "Daddy, I wuv it."



Finally, she got her chance, and she was off. She instantly went to the Christmas tree to touch some of the ornaments she's been dying to see up close. Then she went straight for the front door and started playing with the door handle and the locks. Then she went to the fish tank to "feed the fish."

All things she's been wanting to do, all things I've helped her do, but now she could do them all by herself.

Yes, it is well.

Now, just a few days in, the girl is turning corners and operating her ride like it's an extension of her body. She still gets stuck, but the rule is we don't help her unless she asks -- a rule she pretty much made all on her own.



She really does love her wheelchair and asks to be in it all the time. She can reach, touch, and see things she couldn't before, and it is just so much fun to sit back and watch. Tomorrow is the first day we will be taking her wheelchair outside of the house, and I can't wait to see her face as the world opens up to her.


 
In case you were wondering, this doesn't mean we are giving up on walking. Now, more than ever, we will make sure she is on those legs every day. It is good for her joints, for her growth, and for her physical health. Eventually, we may end up setting up "rules" so that she only uses her chair when we leave the house to make sure she stays active, but it's way too early for that. For now, we are giving her as much freedom as she wants. Girl has earned it.

What's amazing is that just one week ago today, I had a pretty sad day. There was lots of blubbering and lots of chocolate. But it just goes to show that when you actually allow yourself to be honest about your feelings -- no matter how much they hurt or how much you try to hide them -- you not only get past them, you can actually heal.

When my mother-in-law saw Brooklyn in her chair for the first time yesterday, she so beautifully stated, "It does my heart good to see her."

I honestly couldn't have said it better myself.

It is well.