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.