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.

Forward

"Look, Mama, I standing!"

My head snaps up, and what I see makes my heart swell with pride and break all at the same time.

She is bent in half - her strong, little arms bearing the weight of her entire body, making her feet flat on the ground but pushing her butt straight up in the air.

"Yes, baby, you are."

---

It is coming. I can feel it. Her body isn't keeping up with her brain, and I can tell she is noticing. It is motivating her for now, but I can feel her heart beating in mine. Her sweet little heart. Right now, it is whole and strong and innocent. But I fear the day when the cracks begin because I know what they will do to my heart.

Her wheelchair has been paid for and is on its way. Hopefully we get it before Thanksgiving so I remember to be thankful. I know she is more than ready for it. I can see it in her determined eyes, hear it in her demanding voice, and feel it in her powerful pushes as she sits in her stroller.

They also tell me she will qualify for 5 days of preschool next year. As in next fall. In less than a year, my 3-year-old baby will be pushing her way up to the school bus in her wheelchair, totally independent and ready to take on this world.

We are moving forward. I want so badly to put on the brakes, but I know I can't...that I shouldn't. This is called progress, and I know that means we are getting closer to His plan for her life.

This isn't about me; it's about her. And Him. When I remind myself of that, I know this journey is going to be nothing short of awesome. Together, they are going to rock this. I just need to be there when she needs a little push.


~linking up with just write

Learned

Like most people, there are certain life lessons I have to keep learning over and over again. But this year, as I look back, I can honestly say I have spent the last 12 months embracing a lesson that my heart so needed to learn.

Life, as it turns out, doesn't go as you plan. And no matter how hard you try to control it -- even the little stuff -- something will almost always get in the way.

I think I am finally to the point where I know that life isn't about the moments you orchestrate or the moments when everything goes perfectly. Life is about seeing everything else -- the stolen moments, the side views, the imperfections -- and realizing that this is where the happiness, the beauty, the REAL breathes.

 
For me, it is these moments that confirm that there something much bigger than me out there, reminding me of my humanity and giving me glimpses of His sovereignty. No matter what happens (or doesn't happen), there is unconditional love and joy and oh yes peace(!) waiting for me, if I am willing to surrender my preconceived notions of happiness and all the "shoulds" of my life.

Now, that's not to say I don't still love me a day filled with "to-dos" that get done or a picture-perfect smile. But I can now loosen my grip enough to enjoy every part of my beautifully imperfect life.

Four

There was no way Miss Kendall would let me get away with not making her a birthday slideshow of year number 4, so here it is. It makes me cry.

Happy 5th Birthday, Kendall. You are a wonderful mix of sugar and spice, with some slugs and snails thrown in for good measure. I love you!

P.S. This is her favorite song. Just ask her 3-year-old preschool teacher and friends, who got their very own performance last year. ;)

Twist

When Brooklyn was born, she had clubfeet, a common complication associated with Spina Bifida. Her legs, knees, and feet were not in the proper position, which made it difficult to change her diaper and to hold her comfortably, but it never seemed to bother her at all.

At the time, we lovingly called her "Twisty, Twisty," but I'll admit, this was probably one of the most confusing parts of our journey. We, of course, loved her no matter what her legs or feet looked like, but I didn't know the "right way" to handle it all. If I hid her feet, I felt like I was acting ashamed, but if I let them show, I felt like I was flaunting them and asking for attention. Plus, there was so much more to my baby than her twisty legs. I wanted people to see past them -- but, honestly, I wasn't quite convinced they could.

Extensive casting, molds, braces, therapy, and a few surgeries have helped correct the position of her feet and legs, but this continues to be  -- and most likely always will be -- a challenge for our rock star. However, what we have done so far has gotten her lower body ready for our ultimate goals -- standing and walking.

Based on muscle tests and Brooklyn's abilities, we don't think she has any feeling below her knees, and she is showing no signs of gluteal muscles. This means she is unable to stand independently, which has made walking more difficult than we had hoped. It also means she can't feel me tickling her tiny feet, and she has no idea when she gets a scrape on her leg.

None of this, however, has stopped Brooklyn from getting where she needs to go. Sister is making it work. She gets into cabinets, unrolls toilet paper, and (as some of you may remember) loves doing gymnastics. Her current favorite activity is pulling herself on and off her therapy bench. (Little does she know what great exercise this is for her!)

I swear, Miss Brooklyn sees no obstacles. She just sees opportunity -- a trait that will no doubt take her anywhere she wants to go.

Life

Here is our Brooklyn, not even 24 hours old yet, recovering from her first major surgery.

Brooklyn has myelomeningocele, the most severe (and common) form of Spina Bifida. Basically, while she was forming in my womb, her spinal cord did not close properly, causing nerves to be exposed and an irregular flow of cerebrospinal spinal fluid. That means part of her spinal cord was literally sticking out of her back, causing nerve damage and permanent paralysis.

When Brooklyn was born, she had to be wrapped in plastic and could not be held. She also had to be immediately transported to a children's hospital to have surgery to close the opening in her back. I was able to see her for five minutes -- just enough time to hold her little hand -- before the nurses rolled her away to the ambulance. I wouldn't see her again for two very long days.

Myelomeningocele may affect as many as 1 out of every 800 infants. The levels of nerve damage and complications vary by individual and can take time to identify, which makes waiting a very big part of Spina Bifida.

The causes of MM and other forms of Spina Bifida are unknown, but they have found that prenatal vitamins with folic acid can decrease the chances of occurrence. The tricky part is that it happens very early in pregnancy, typically before a mother even knows she is pregnant.

If you want to read more about Spina Bifida, you can go here. I also wrote this blog post shortly after we found out about Brooklyn's diagnosis. I promise you there is much more to the story than a bunch of facts and statistics, but I wanted to start here, with the basics.

Because of the compassion of a nurse, I was able to hold Brooklyn the day we were reunited. Yes, there was a foam layer between us, but in that moment, I realized just how very precious life is. Every life. 

I realized how thankful I was just to have her. Nothing -- I mean nothing -- else mattered.

Aware

So October is Spina Bifida Awareness Month. It is also Down Syndrome Awareness Month and Breast Cancer Awareness Month. And as much as you might think that all of those causes sharing one month might water down the effect of having an awareness month, I actually think it’s kinda perfect.

Sometimes I hesitate to talk too much about Spina Bifida because I don’t want anyone to think that I believe we are the only family in the world dealing with challenges. In fact, one of the surprising benefits of our journey has been how much compassion it has brought to my heart. I will never forget sitting in the neuro intensive care unit when Brooklyn was only a week old and hearing the cries of other children. Yes, I would have given anything to have my baby unhooked from those monitors and in my arms at home, but I also would have given anything to ease the fears of the 10-year-old girl next to us or to take away the pain of the 4-year-old boy three curtains down.

It wasn’t until I sat in that hospital with Brooklyn that I realized just how many children—how many families—spent time in that very same building. The amount of surgeries that were being performed. The amount of nurses doing life-changing work. The amount of fear and hurt and trust and hope that flowed through the air I was breathing. It blew my mind and heart to pieces.

And I took that with me when I left that building. I feel things more deeply now. Basically, once my world was rocked, I realized just how many other worlds are being rocked every day.

So, on a month when I am supposed to be spreading awareness about Spina Bifida, I am honored to be doing so along side other advocates that are also spreading awareness about causes that are just as important.

No doubt, this month is a special one. We celebrate the courage of every cancer fighter, the beauty and joy of those with an extra chromosome, and the power of focusing on abilities, not disabilities. Maybe there is even another cause I am missing, and if so, that is even better.

To me, that is the whole point of spreading awareness. It’s not about making one cause shine more brilliantly than another. It’s about being aware that we are all dealing with challenges in our lives. It's about acknowledging differences but understanding that at the same time, we are all struggling in some way. That paying attention and caring can go a long way in making this life more joyful for everyone.

Why should you care about Spina Bifida? It’s a good question, and it is one that I have asked myself the last two years. Why should I spread awareness about something that doesn’t directly affect other people? Do they even care? Maybe not, but of course, that is precisely why I need to tell you about it. And I hope to do that in different ways throughout the month.

Here’s what I know: Now that my eyes have been opened, I care about a lot more than just Spina Bifida. I care about autism and Down syndrome and CHARGE Syndrome and cancer. The fact is, the more I am aware, the more I care. And the more I care, the more I am willing to do something about it—whether that means sending a friend a note of encouragement, making a meal, or praying in the quietness of my heart. Maybe some day I will do more than that, following the footsteps of my friends Tricia, Erin, Alyson, or Katie or my cousin Kevin—people who are actively raising money, raising awareness, and showing compassion in ways that are truly making a difference.

But for now, I will use my little space on the Internet to tell you about our Brooklyn and how she is proof that nothing—not even Spina Bifida—will take away the person God intended her to be. She, like every other individual out there, has something to offer this world. Her challenges are different than yours, but as she has already shown us, her goal is the same as yours. And that is to rise above those challenges.

Awareness isn’t about knowledge or pity. It’s about acceptance and compassion.

So take the time to look around you. Be aware. Listen, care, and even better, go do something about it.

Six

This is a over a month late, but I could tell a certain 7 year old was feeling "unspecial" when I caught her watching Brooklyn's 1-year slideshow yesterday morning. And now, of course, Kendall is counting the days until her birthday so she can get one, too. I guess since I have totally dropped the ball on their baby books, this is the least I can do! (Even if it is totally amateur... :)

I love you, Emma Kay. Your passion will always inspire me.

Today

With every birthday, I watch them grow, stacking up their days into taller piles of milestones and memories, mistakes and miracles.

 

With every candle added, I see their light shine brighter and only hope that I can find ways to feed the flame that makes them special, that makes them feel special.

Among the sprinkles and tissue paper, I see their joy, their innocence, their genuine gratefulness for this life. For every day.

And I learn. 

The blessing of these blessings, growing with each and every year. 

I close my eyes and wish that in the midst of the crazy and the confusing, I remember to treasure it -- all of it -- now. 

Today.

 

Before another candle is added.

Image

It's funny the way God works sometimes. I have about four unfinished blog posts saved in my cue, most of which are no longer than a few short sentences. Others have been fully written in my head, but haven't even made it onto the screen. No matter how many ideas kept popping into my head this past month, something has kept me from posting anything since my last entry. It's almost like I needed that entry to float around here for a while. Like I needed it here, waiting for me, so I could absorb all that it meant before moving forward.

I meant -- and felt -- every word I wrote in that entry. Yet, it wasn't the whole story. Just a half-step toward a full blown leap of acceptance I wasn't ready to take yet -- and certainly not one I was ready to share.

Last week, I took that step. And today, I feel ready to share it, although I admit that  the feelings are still pretty raw. Actually, I don't know if "being ready" has anything to do with it. I just feel like I need to share it. My head -- and my heart -- need to release.

So here goes...

Brooklyn has spent the last few months working her butt off. A physical therapist comes to our home twice a week to work with her for about an hour, but I work with her every day for about 1-2 hours, depending on how crazy things are around here. This includes time in her stander for weight bearing and time in her RGO brace and walker to practice walking. It's a part of our daily schedule, and the girls have even helped me find creative ways to keep Brooklyn motivated and happy. As you can imagine, those moments are the ones that make it all seem worth it. Not only because Brooklyn is getting stronger, but because I see Emma and Kendall at their very best...and perhaps I see the best in myself as well.

If you have followed our journey at all, you know that Spina Bifida is all about waiting. There is no real way to accurately assess nerve damage and physical limitations, so you just have to wait and see. Sometimes it's a matter of therapy and muscle strengthening, and sometimes it is a matter of what I have started to call "heart strengthening." In other words, it's a matter of acceptance.

I have said before that there have been images in my heart of what Brooklyn's future will look like. Those images have included a little girl with pigtails walking with arm crutches. Maybe a wheelchair for longer-distance adventures like the zoo, but for the most part, in my head -- in my heart -- she was able to walk with little assistance.

Back in January, when we had our muscle test, there was really no trace of any gluteal (butt) muscles. I have said all along (and was told) Brooklyn has strong quad muscles and that's all she needs to walk. That is true; however, you need gluteal muscles to stand.

As Brooklyn and I have worked together these last few months, I have been amazed by her determination; the way her mind wills her legs to "KICK!" even when the rest of her body isn't quite able to keep up. She can kick, yes, and she can move forward, but her back is very arched and her balance isn't secure enough for us to just let her go. She wants it -- we all want it -- but her body has its limitations. That's just a fact.

So I finally asked the question the other day. The question I know my PT and our other specialists wait for us to ask because they don't want to make any predictions and maybe because they know we need to be ready. So I asked, and it looks like we need to start thinking about ordering Brooklyn a wheelchair.

I've struggled the last few weeks over my fear of this word -- this new image -- when I've known it was always a possibility. Some of you reading this may even thinking, "Duh, of course, she needs a wheelchair." But this whole hope/acceptance balance thing is tricky. I have tried my hardest to take one step at a time and I know God can do anything, but I am learning that at some point, there are realities you have to embrace just to get through it all.

I'm not really sure what I've struggled with more -- my disappointment or the shame of my disappointment. If the goal is to give Brooklyn independence so that she can get wherever she needs to go, does it matter how she gets there?

Well, to a Mama's heart, it does matter. Honestly, my heart is broken. And still breaking. The tears are falling as I type, and I hate that. I know this shouldn't matter. I know Brooklyn is happy just as she is, and I know God has a plan. But it still hurts. A deep, throbbing hurt that turns my stomach and makes me feel utterly helpless. Sometimes, I feel as if I failed her. I know in my head it is not my fault, but my heart doesn't quite agree. I am her mother -- the one who carried her -- and if you too are a mother, you know that this is a feeling you really never escape.

And since I am laying this all out on the table, I might as well tell you that this whole acceptance thing happens in waves. Just when you think you have it under control -- BAM! --something hits you and the pain is as raw as it was on that first day. This time, there were actually two waves of grief. The first was just the overall disappointment of her challenges, while the second was the one that compares her to all the other little Spina Bifida rock stars I have come to know. Rock stars I have seen through their early stages that are now taking steps, playing sports, and standing in photos. It is that second wave that throws me the most, as my heart battles with feelings of joy and triumph and, well... I'll just say it... jealousy.

Perhaps the hardest part of all of this is that I can see the determination, the will in Brooklyn's eyes, and what I can't handle is that some day she may be disappointed, too.  Her spirit is such a wonderful mix of strength and sweetness, and more than anything, I don't want that to be taken away from her.

But it is that realization that pushes me to get past this. To let myself feel and express and not be ashamed so that when she comes to the age of understanding, I am over it and I can encourage her to embrace her life and keep kicking. God gave her that spirit, and I believe -- I have to believe -- He will not take that from her.

I also realize I have a role in that, too. I can't mope around and act like her life is something to be sad about because, well, it isn't. Her life is a beautiful, wonderful, glorious miracle that I wouldn't change for the world.

For.the.world.

And so just like in those early days, I am clinging to His promises, letting the tears fall, and digging deep to find the will to move forward. Yes, my image has been altered, heart adjustments are being made, and we will order that wheelchair. But Jeff and I have promised each other that no matter what, we will encourage her determination, to keep her kicking, even if it's not all the time. That no matter what her mode of transportation is, we will never let her give up. We will do our best to breathe as much life into that spirit as we can because that is about all we can do. The rest is up to Him.

I am broken, yes, but as the days pass and I find the strength to hand this over to Him, I can feel His peace and power in my weakness. And the more I lean on Him, the more I can feel the hope finding its way back into my heart, pushing out any preconceived images I have been holding on to. Because the only image that matters here is the one He created.

The love I have for Brooklyn outweighs any of this pain and that is how I know it is all going to be just fine. Just like He planned.

Destination

We've all heard the phrase, "It's not about the destination, it's about the journey." In many ways, that's been an underlying theme of my blog for the last 2 years. And what I love the most about that statement is that our journeys are all so wildly different, yet at the same time, they are at the core, very much the same.

We all have challenges. We all have a goal -- a destination -- in mind. And while sometimes the path might not be the one we would have chosen or may even be full of some pot holes we'd rather not jump, the point is that we can push through it. If the desire is there -- if the will to reach that destination is strong enough -- we can get there, regardless of the challenges.

During this journey, there have been times when I've been sad about the things Brooklyn won't be able to do. Things that her sisters will be able to do -- maybe even do together -- while Brooklyn has to sit on the sidelines.

But, VERY much like her determined big sisters, Brooklyn has once again taught me that if there is a destination she wants to reach, she will reach it. In her way.

Kendall LOVES doing gymnastics. In fact, I think I see her upside down more than I see her right side up throughout the day. She is constantly doing cartwheels, handstands, and headstands, regardless of where she is or what she is (a-hem) wearing. (We have since decided that shorts must be worn under all skirts and dresses...)

Always trying to be part of the action, Brooklyn started asking me to flip her over. Of course, at first I was happy to do so, but after 923 assisted somersaults, I realized perhaps I should have thought that one through a little. She is 21 months old and doesn't quite comprehend what "one more time" truly means. So to her dismay, Mommy has to say "no" after about 2 or 3 flips.

But not to worry, Miss Brooklyn has figured out her own way to gymnastics -- without Mommy's help -- and is more than happy to perform on command. In fact, she now has added a pause between acrobats to wait for applause.

This video is a little old and was taken around Easter, but I still wanted to share it. Brooklyn's "gymnastics journey" may look different, but really, does it matter? The girl has reached her destination, and she is happy and proud. And so am I.

*Please ignore my extremely annoying high-pitched "excited" voice. Precautions will be taken in future videos to prevent possible hearing loss.*

Hello Again

By the looks of this blog, we never had an April. Whoops. How did that happen? Honestly, I never intended for a whole month to go by without posting, but I have to admit that my initial absence was intentional.

As much as I love this blog and it is my outlet, anytime I find myself tempted to do something for "blog material"  or, worse, putting way too much energy into checking back for comments, I pull back. I like sharing our story and putting it all down for prosperity, but I never want to fabricate anything. I enjoy blogging about something awesome we did, but I don't want to do something awesome just so I can blog about it. See the difference?

In other words, I try to keep myself in check.

And, really, sometimes I don't want to share everything. The last few months have been trying for me, and I like to gain a little perspective before I go spilling my guts. I want to be real, yes, but I believe some things are truly matters of the heart that need to be between you and God. That is, unless He leads you to share those feelings.

I've had a pretty important post traveling around my head for a while now, and I hope I have the courage to write it soon. I considered writing it today, but like someone who hasn't been to the gym for a while, I'm kinda just showing up today. No pressure to try and write a manifesto, just dipping my toe back into something I truly enjoy doing for me and for my family...when I have the time.

So, just like any good lazy blogger, I'm going to sum up the last month in photos. But only because I want to. Hopefully, you enjoy them too.


My favorite Easter photo that captures all of their personalities... my goofy Emma, my giggly Kendall, and my happy little Brookie.




All of our Spring Break family fun jam-packed into one day: A family trip to the Museum of Science and Industry, followed by the Sox game.









 
My usually neglected feet showing off a pair of FREE sandals (long story...) and Florida-ready mint green toes.




My awesome, totally relaxing, and ridiculously affordable annual road trip to Panama City Beach, courtesy of my dear friend's generous in-laws. Five stressed-out mamas doing nothing but reading, sleeping and laughing like teenagers for five days straight... all the while, our hubbies willingly hold down the fort and take care of our kiddos. So, so blessed.



And, finally, Soccer Mom season #2 is in full swing, and I have already learned the importance of blankets and snacks. Soccer Dad is still learning the importance of "playing for fun"...and maybe I am a little bit too. Maybe.