Today

We take nothing for granted around here.

Nothing.



Every smile. Every giggle. Every roll. Every kick. Every kick.


 
Every kick.

They are victories, every one of them. What may seem small and insignificant is evidence of a big, big God that can move mountains...and our little girl's legs.

Today, He died for my little girl. For all of my little girls.

For all of us.

He died so that one day we can have more blessings than we can fathom.



So that one day she will not only be able to feel her toes, but dance on them and praise the One who gave His life because He loved her that much.

I will make sure she knows that Truth and all that He promises her in Heaven.




His sacrifice, more than we can ever imagine. His gift, greater than we could ever deserve.

Don't take it for granted.

Foto Friday: Silly Reminder

I love this picture so much I had to share it. It is just so my girls. Anyone who knows them, knows that they love to be goofy. Like ALL. THE. TIME.

At 6am... during prayer... at bedtime...

I admit, most of the time it drives me nuts.

And that is exactly why I love this photo so much.

It reminds me how much joy their goofiness can bring me...if I let it. So often I get so stressed out about what they/we could/should be doing that I forget to take a step back and enjoy the best part of my kids...

Their youth.

They are goofy, silly, at times absolutely cra-zy, but you know what?

They are fun.

All too often do I find myself squashing the silly aound here, and for what? Life is just too short.

I now have this photo as my screen saver as a reminder to make room for the silly in this house.

For laughing as I drink my morning coffee. For allowing my girls to share their joy when talking to God. And for ending the night with a giggle or two (even if, a-hem, Daddy has been out of town for 4 days...)

So a very happy weekend to all of you. May it be filled with lots of silly!

A Picture of Faith

She has prayed for her. This I know. This I feel.

Brooklyn must have known it too. Their connection was real. I saw it. They felt it.

So much Faith in that creased face, in those innocent eyes.

A beautiful union of wisdom, hope.

Devotion holding tight to complete Trust. Trust grounded by dedicated Devotion.

Five generations coming full circle to illustrate all He has done. All He can do.

All I hope to be.

Embrace

So the other day Jeff and Emma were having "a thing." Ya know, "a thing" that involved yelling, stomping, and a whole lot of crying. Emma was clearly in the wrong, and Jeff was keeping his cool...for the most part. He ended up leaving the room, totally frustrated.

As I listened to Emma continue to cry in her room and watched Jeff glare at me with that "I didn't sign up for this" look, I simply said, "She probably just needs a hug."

At first, he looked at me as if I was crazy. She was out of control...kicking, screaming, sobbing over wanting him to read "just one more book." But after he had time to digest what I said, he got up, walked into her room, and I heard the crying stop.


A few minutes later, he walked out and said, "You were right. She's asleep."

Now, this isn't to say I always have the right answers, and I certainly don't make a habit of hugging away the problems around here, but sometimes when things are spinning out of control and you don't know what else to do, a hug goes a long way. For everybody.

And it got me thinking. Really, isn't that a better way to approach life? Sometimes it is unfair and all we want to do is kick and scream and sob. Heck, sometimes we need to do all that. But most of the time, what we really need to do is embrace it. Grab the life that has been given to us and just live in it, dance in it, and make the most of it.

And you know what? That is definitely the kind of life I want for me. For my marriage. For my girls.

If you haven't noticed, things have been a little heavy around here lately. Too heavy. Somewhere in the midst of shunts and the everyday chaos that is motherhood, my focus got skewed. My perspective clouded.

So I have been making some changes. Real changes that are making life more manageable, more enjoyable. So far, I like the differences I am seeing, and better yet, I love what I am feeling.

Sure, some spring weather would make things even better, but I know that is just around the corner. For now, I'm just going to snuggle in my robe, enjoy the warmth of my coffee, light a yummy candle, and wait for the flowers to bloom.

That Night

One year ago today was that night. I actually had to look up the date, but I knew it was coming. I could smell it in the air; I could feel it.

I've been wanting to write about it for a while now, but never really had the chance. When the opportunity arose to audition for this show, I decided it was time to get it on paper.

Unfortunately, my piece wasn't chosen for the show, but I know I was meant to write it...if only for me.

So although I am in a pretty good place right now – today – I still wanted to post this piece on the very day it happened. Perhaps to prove to myself just how far I've come in a year, or perhaps to further the healing. I'm not quite sure.

Whatever the reason, I need to post it...if only for me.

Inside Out

It was the night my heart broke. Shattered in fact. Sure it had been broken before, but this was different. The pieces were smaller, the breaks much too complex for complete and total restoration.

A new heart would have to take shape, would have to beat in spite of the cracks. Cracks that would never quite heal, but yet, were never meant to heal. This new heart, this broken vessel, would find a way to beat harder, stronger, better. After all, a mother feels from the inside out—from the day her baby starts to form inside of her until the day her baby has babies and the emotion only grows deeper. For a mother, there is a sixth sense that is all about feeling, but has absolutely nothing to do with touch.

I remember what I wore – my favorite peasant maternity top that made me feel beautiful and Bohemian and all sorts of glow-y. What I made for dinner – a warm pot of chicken cacciatore that would never quite taste as good as I hoped it would upon our return home. The slightest hint of spring in the winter air that persuaded me to leave my leather gloves in the car.

And the bounce of my four-year-old’s almost-curly waves as she skipped up the sidewalk into the entrance of the ultrasound facility.

“Do you think it’s a girl, Mom? What do you think, Daddy?”

She was so excited, our soon-to-be “double big sister.” I pretended to be. This was our third child, our surprise. I was only playing along with the find-out-the-sex game to appease my husband and our two daughters. I honestly didn’t care. I just wanted assurance that everything was okay. There was no reason to believe it wasn’t, but there were nervous whispers; whispers my head kept pushing aside, convincing my heart that it was just third-child paranoia.

But nonetheless, my heart was jumpy that day, perhaps anxious for the reformation it was about to endure. As the first image revealed a squirmy little baby, the tears started to fall and my emotions started to take over.

A feeling close to relief spread throughout my body, but the tears remained steady. “Must be the hormones,” I nervously joked to the technician.

She was chatty, the technician…until she wasn’t. I tried not to notice. Emma was getting wiggly and starting to lose interest. I could see the beating heart on the screen overhead; this was real, everything was okay…

until it wasn’t.

“Turn this way. No, this way. Wiggle your belly like this. Again. Again. Again. Okay, I’ll be right back.”

The doctor then came in, a middle-aged woman whose face told me she too was a mother.

She moved the scanner over my swollen belly and looked me straight in the eye, mustering up something deep within. “There is a problem with this baby,” she said gently.

I saw her hand touch my leg, but all I felt was a gut-wrenching pain from somewhere deep inside my soul. A familiar, but stronger pain that had nothing to do with me but had to do with the helpless life I carried. An inside, out pain that only another mother could possibly understand.

Through the darkness, I watched as my husband processed the information, his face growing white than red, twisting and awkwardly contorting into an emotion somewhere between utter confusion and total understanding. Another pain grew within me.

I saw Emma’s innocent eyes watching, watching, and I noticed her jittery feet began to dance faster. Another pain emerged.

My heart was already broken at this point; my soul aching as it desperately tried handle all of the emotions, all of the pain.  None of which was my own.

Not yet.

Spina Bifida. Open Defect. Nerve Damage. Paralysis. Fluid in the Brain. Cognitive Challenges. 1 in 1,000.

The words were swimming round and round the room, on the outside, trying their hardest to penetrate, but it was too soon for that. The pain had taken over the inside. My baby. MY baby. How could this be happening to MY baby?

That night, within the safety of my bed, the pain found its way to the outside. The tears and cries lasted all night long, until the inside strength provided by my Savior rose with the sun, taking over my outside and enabling me to begin a new journey, one that was planned long ago.

In the days and months to come, those swimming words would penetrate. On the outside, a belly was growing and preparations were being made. But the real changes were happening on the inside. A beautiful life was forming for the first time, but another was forming for the second.

With every surge of pain, a mother was learning how to love deeper, live fuller, and appreciate each and every blessing. Like a magnet, the crumbled heart pieces found the space where the love pulsed deep and, slowly, built a new home. This new creation was now beating for new reasons, reasons that not only held the broken pieces together, but formed them into a shape far more beautiful than the original.

The pain also found its proper place inside; a place my heart and soul agreed upon; a place I am allowed to visit when I need to be more than a mother caring for a child with special needs, but when I need to be human.

While the reason for my pain is different, I know I am no different than any other mother who feels for her child. The mother who forces her feverish infant into a lukewarm bath at 3am. The mother who watches her toddler get rejected for the first time at the playground. The son that doesn’t make the team. The daughter whose heart has been broken. Their pain runs through our veins, takes over our organs, and provides grief stronger than we ever wanted to feel. Pain that breaks our hearts, turns us inside out, and never leaves us the same.

But it is the pain of motherhood that makes us better mothers, and even more so, better people. A confusing love-pain mix that gives our lives purpose far beyond motherhood and slowly uncovers our true self. A self that is in fact not broken, but reformed, reshaped, renewed, and wonderfully made—from the inside, out.

In Case You Were Wondering...

Somebody is doing just great and is back to her happy self. As her Grandma says, "The sparkle is back!"

I'll post an update after Tuesday's MRI and fill ya'll in on the details of what's been going on with our little rock star. I know I've been a little vague, but it has been a bit of a roller coaster ride.

But we're not too worried these days. Right now, we are just appreciating and totally enjoying all the smiles and giggles.

Don't you just want to snuggle her??!!!

Trusting through the Grey

Well, the honeymoon is over. We are right smack dab in the thick of what is Spina Bifida. And, honestly, it is harder than I ever imagined.

I like to call it the land of "grey." Nothing is black and white in Spina Bifida world. There are no solid answers. There are no promises. But, of course, that means we have Hope.

I know this. I've known this since the day we found out about Brooklyn's condition. Her middle name is Hope, after all. But that was before I could see her little face. That was before I fell totally and completely in love with her. And that was before she was in front of me, crying, crying, crying and I had no answers, just possibilities...

a shunt malfunction?
the wrong pressure setting?
urological issues?
teething?
reflux? 
gas?
growth spurt?

I could go on and on and on. And I have. My head is spinning, my heart is aching, and I am physically exhausted. I feel weak. I hate that. I hate that there are no answers. I hate that the only way we may have an answer is waiting. And I really hate that I am using the word "hate." It is such an ugly word, but right now, it is accurate.

Tomorrow, we might get answers; we might not. I am hoping and praying with all that I am that we get some answers. I can't nurse one more minute. I need sleep. But WAY more than any of that, I want my happy baby back.

These are my feelings. As ugly as they are, they are accurate. I want to be strong. I want to be "inspiring." But the pressure needs to be released...my heart needs to feel.

But this waiting, this "grey" I speak of, I know He will use them. THIS is the character building. THIS is what will strengthen me. THIS is what will give me the Hope, the endurance to do this every minute of Brooklyn's life.

THIS is what faith truly is. It is having the discipline to TRUST when it is the last thing you want to do.

So I cried out to Him. I told Him I trusted Him until I believed the words myself. Over and over and over.

I trust Him.

Do you?


"I waited patiently for the LORD to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the LORD."
Psalms 40:1-3 (NLT)

This is also posted over at The Journey.

Brooklyn Update: MRI on Monday

Hi everyone!

Just a quick prayer request for Brooklyn. She will be having her full brain/spine MRI this coming Monday and has to be put under again.

Not to worry...this is just a baseline test to evaluate her anatomy and to see how her ventricles are responding to the shunt. It's an outpatient procedure -- so we should be in and out in 5 hours -- but I still ask that you pray that she comes out of the anesthesia okay and that the MRI doesn't reveal anything negative. The test is supposed to be around 11am.

As always, thank you, thank you, thank you for your prayers. Our family is so blessed to be covered by your words!

I'll keep you posted on how our little rockstar does on Monday. Until then, here's a picture of her contagious smile. Clearly, your prayers are working!

Managing our Mess

I've been angry...at God.

There I said it.

But not to worry: He knows it; we've talked about it; and we're working on it.

Well, I'm working on it. Thankfully, He keeps loving me anyway.

Now, let me clarify. I've said many times that I have never been mad at God for giving our family a child with Spina Bifida. That is still 100% true. I am not angry about the Spina Bifida.

I've been angry about, well, everything else.

Let me explain. Everyone always talks about accepting your "new normal" when you have a child with special needs. And I got that. Or at least I thought I did.

I have totally accepted the fact that our "new normal" includes things that most mothers and families don't have to deal with -- constant doctor appointments, physical therapy, medication, catheters, surgeries, etc., etc. These things help Brooklyn, so I can deal with all that. (Most of the time.)

What I didn't realize is that our "new normal" ALSO includes the things most mothers and families DO have to deal with -- money issues, job stresses, lack of sleep, allergies, illness, etc., etc.

I guess I somehow thought we'd get a "pass" on some of the everyday stuff now that we had this new challenge in our lives. Like suddenly a money tree was going to fall out of the sky to pay for all the medical expenses. Or HGTV was going to show up at my doorstep and decorate my new(ish) house for free. Or that Jeff and I would become the world's best parents and know exactly how to handle a very sassy 3-year-old or a kindergartener that still has not outgrown full-out meltdowns.

Not so much.

I didn't realize all of this at first. It wasn't until some soul searching and some tearful discussions with the Man upstairs that I realized why I was in such a funk. Honestly, I guess I thought I deserved an easier life because of our challenges.

But of course, that is not true. I don't deserve an "Easy Button" any more than anybody else does. That isn't the way life works.

Life is messy.

Brooklyn is not a perfect baby. She cries a lot and most likely won't let you hold her. She doesn't sleep that great at night, has zero interest in cereal, and often pees through her outfit 10 seconds after she is fully dressed. She has reflux issues (like her sisters), and I have to avoid certain foods so she can better tolerate my breastmilk.

Granted, she is a rock star in many ways (and has the most adorable smile), but she is still a baby. A gooey, cranky, diaper-dirtying baby. But, really, why wouldn't she be? That's the way she should be. She is human, and she is wonderfully and uniquely made.

Even Jesus' life was messy. Look at his birth. Yes, we all know there was no room at the inn, but we still glamorize the whole event. Nativity scenes depict a warm cozy stable full of hay and adorable animals surrounding a peacefully sleeping baby. But the truth is, Joseph and Mary were probably in a cold, dark cave -- a common place to keep sheep and other animals in those days. A cave full of manure and animals that haven't been bathed and were probably not very understanding of the whole birthing process. Not exactly the ideal birthing scenario. Yet out of that messy situation, God brought the greatest gift of all.

So I am learning to appreciate our mess -- all of it --  and I felt it only fair to share that with you. I could hide behind this blog and pretend that life at our house is perfect and happy and full of adorable baby smiles all the time, but that's not true. It is often chaotic and sticky and most definitely messy.

But I refuse to turn this house into a pit of pity. Perspective is everything, and as long as I am talking to Him, reading His word, and accepting His grace, I am convinced this mess is going to turn out to be the life He planned for us.

Until then, I will do my best to enjoy the ride and dive straight into the goo if I have to. He will clean it up.

"Create in me a clean heart, O God. Renew a loyal spirit within me."
Psalm 51:10

"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast."
1 Peter 5:10

We can't decide...

What do we love most?

That smile...




Or those eyes...




Then there's that adorable little nose.



Oh, and her giggle. Hopefully I can share that with you all soon.

Yep, we are totally in love with this little love bug. Every inch of her!

Soul Searching

I am strong.

I can do this.

I am weak.

I can feel this.

I am hopeful.

I believe.

I am forgiven.

I question.

I am blessed

Because of this.

I hurt

Because of this.

I understand

Most of the time.

I am confused

A lot of the time.

When I am less,

He is more.

When I am more,

He is glorified.

When He is glorified,

It is worth it.

Sharing the Journey

I really do have so much to say -- my heart and mind are heavy lately -- there's just not a lot of time these days. But I did manage to write a quick blog over
here about our family's support system.

Our Brooklyn will never walk alone, and that's a good thing.

Disappointment

Blogging over here today about disappointment, but I have a lot more to say. Stay tuned for another post later this week.

Wisdom

When we brought Brooklyn home the other day, the first thing Emma did was kiss the stitches on her head. She didn't grimace like I did; she wasn't scared. She just gave her sister a little love because, well, that's what big sisters do... especially when they haven't seen their little sister in a few days.

When Kendall saw the shunt for the first time, she said, "That's so cool" and giggled. She gave her "Brookie" a quick hug and skipped off to play.

I know they don't totally get it, but in many ways, they get it so much more than I do.


They teach me so much, these little ones.

Love. Acceptance. Peace.

This isn't easy, but it doesn't have to be complicated.

I am learning that life isn't always about totally "getting it" because let's face it, sometimes "it" just doesn't make sense at all. And many times, "it" just isn't fair.

"It" is about finding the love, the joy, the giggle.

And then trusting that in time, the understanding will come.


“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."
Isaiah 55:8-9

Home Safe and Sound

Right before the first snowflake fell last night, we pulled in our driveway, rockstar in tow.

We are home. Thank you, God!

At first I was a little nervous about going home so quickly, but the neurosurgeons convinced me that because Brooklyn was doing so great that it was actually better for her to recover in her home environment -- it's more comfortable and it's healthier. So just 24 hours after her surgery, we were on our way home. We even got home in time to tuck the girls in bed. What a blessing.

Brooklyn is doing really well and doesn't seem to mind the shunt. Jeff and I are still getting used to seeing it. We expected it to be smaller and unnoticeable, but it is actually quite large and sticks out of the back of her head. As she gets hair, you won't be able to see it, but for now, it does take us back a little. You can also feel the tube as it travels down her body to her stomach, which is a little strange. It all still makes my knees a bit weak.

BUT it is helping her. Her head size has already come down, and the veins in her head aren't nearly as large and dark as they were. Her soft spot is truly soft and she seems to be the same old Brooklyn. I tell you that nothing brought more joy to our hearts than seeing her smile yesterday morning...her way of telling us that all is truly well.

There is a bit more to worry about now that she has a shunt, but assuming things continue on the path they are on now, Brooklyn should have a BETTER quality of life moving forward.

I do have a lot more to share, but I really want to enjoy my family today, so that will all have to wait a little while. I just wanted to let you all know that we are home and say THANK YOU so very, very, very (very!) much for all of your prayers. You have no idea what a comfort it was sending our daughter off to surgery knowing we had an ARMY of warriors praying for her. Your many prayers not only covered and protected Brooklyn, they covered and filled Jeff and I as well.

We are humbled, blessed, and forever grateful to all of you. May He bless you as you have all blessed us!

Brooklyn Update: Surgery on Friday

So after 4 months of waiting it out, the time has come for Brooklyn to get a shunt. We were hoping she wouldn't need one, but her head size is continuing to grow and has reached a point where we need to intervene.

Basically, brain and spinal fluid is slowly collecting in her head, which is causing it to grow at an increasing rate. The good news is that she has never exhibited any negative symptoms due to the slow build-up, but if we don't stop it at some point, there could be complications for her down the road. It is also a good thing that we waited as long as we did because her body is now older and stronger, which decreases the chance for infection.

So the decision was made late yesterday to have the surgery this coming Friday. A shunt will be placed in the top of Brooklyn's head that will drain all the way into her stomach. Jeff and I feel confident that this the right thing to do, and trust that God will protect Brooklyn throughout this major surgery. What a peace to know that He is in control!

So far, it looks like the surgery will be at 3pm on Friday. We ask that you pray for complete success during and after the surgery and that there is no infection or adverse reactions to the shunt. Sometimes, the brain can go into "shock" after the surgery, which could cause seizures, so please pray that this does not happen. We also ask that you pray for Emma and Kendall, as Jeff and I will be at the hospital for about 2 days.

We also found out yesterday that Brooklyn's foot surgery wasn't completely successful, so she will have to have another larger surgery right before her 1st birthday, which means more casting. This was a little discouraging, but our orthopedic surgeon said the serial casting we've already done was completely successful in correcting her knees and her hips. Her feet also look sooo much better, so this is (hopefully) the final step in making them ready for walking! :)

Please know that even though the end result is not what we prayed for, Jeff and I feel God's hands in this, and we know He is still guiding our journey. In fact, God slowly prepared my heart for this news in the last few days, and Jeff is actually feeling relief. Please pray that His peace continues to fill our hearts. We never thought we'd be taking our baby in for brain surgery, but we also feel so grateful to live in a day and age where they have so many ways to heal and help our Brooklyn.

Also be encouraged that our little rock star is thriving and doing all of her baby jobs very well! She is growing like a weed and is smiling all the time. Jeff has even gotten her to giggle a few times! Her personality is really starting shine through, and we are loving every minute of it! :) Through Brooklyn, God has shown us what a precious miracle children truly are, and we feel so blessed to have a renewed perspective on life.

As always, thank you for your prayers!!! We will keep you posted on Friday's surgery.

Foto Friday: Jammies in 3D

I think it's funny how much people say the girls look alike. Honestly, I only see the differences. BUT I do see a lot of Emma in Brooklyn...much more than I ever saw in Kendall.

Anyway, I thought I'd let you all be the judges. Here are all three of my little ladies in my all-time favorite jammies. Granted, Emma is only 6 weeks old, so it's not quite a fair comparison, but you get the point.

Have a great weekend everyone! Hope you get to hang out in your favorite jammies!


Brooklyn, 3.5 months old





Kendall, 3 months old





Emma, 1.5 months old

A Thanksgiving Testimony

(*This is the testimony I shared at our church service today.)

Good morning, everyone. Happy Thanksgiving!

Today, I feel God called me to tell you about something very important in my life that has filled my heart with more Thanksgiving than I knew possible.

Socks.

Yep, today I am thankful for socks. Actually, white socks with hot pink ruffles, green polka dots, and the embroidered letter “B.”

A year ago, I may have thought these socks were cute, but I never would have imagined the overwhelming sense of gratitude I would feel when I finally got to put them on my 3-month- old baby.

Such a small thing, socks. But as I have learned these past 8 months, God often reveals himself in the small things just as much as He reveals Himself in the big things—if you are paying attention, that is.

You see, 8 months ago my husband and I experienced what I guess most would say is a “big thing.” During a routine ultrasound, we learned that our third child, Brooklyn, had Spina Bifida. For those of you that don’t know, it’s a neural tube defect that affects the central nervous system. Basically, when our baby was forming, her spinal cord failed to close properly, leaving an open defect in her back that exposed her spinal cord and caused an irregular flow of brain and spinal fluid.

The news, of course, was a huge surprise. We had two very healthy, active little girls at home already. We barely knew what Spina Bifida even was, but we quickly learned more than we ever wanted to know: Our baby may never go to the bathroom on her own. A build-up of fluid in her brain could cause cognitive challenges. She may never walk.

Big, big things we never thought would happen to us. But they did, and I can honestly stand here and tell you that I have never been mad at God about that.

From the beginning, I have felt this overwhelming peace that this is part of God’s plan—or, better yet, that He was going to use it for His glory.

Even that first night, when I lay in bed, sobbing for hours and hours, I felt God was right there with me—crying. It was the worst night of my life, yet knowing that God was in control, that He knew this was going to happen, made me cling to Him and His promises like never before. My heart was broken, yes, but when the morning came, God picked me up and, as I like to say—our journey began.

What I experienced the next 5 months of my pregnancy was nothing short of awesome. Prayer after prayer answered. Brooklyn’s legs, which at one point, were not moving, started to kick in my womb. We found physicians and specialists that were among the best in their fields. I had nurses PRAYING with me at doctor’s appointments. Hundreds of family members, friends, and strangers were sending notes of encouragement exactly when we needed them. Prayers of healing were being sent up, and my faith grew like never before. God was guiding me through every day—the good and the bad. He provided my heart with constant encouragement and gave me wonderful images of Hope that will forever be imprinted in my heart. He gave me strength to share our story, but more importantly, used my weakest moments to help me understand.

It was His plan.

And then she was born. Brooklyn Hope Bonnema. I had been so anxious to meet her, to hold her in my arms. But, of course, I couldn’t at first. In fact, I wouldn’t hold her in my arms for 6 whole days. The longest days of my life.

But in those 6 days – and every day since then—I have learned to be thankful for the little things.

Like the first time I got to feed her a bottle. Yes, she was hooked up to several machines, and was lying on a portable sleeping table, but she didn’t need an IV and she was swallowing on her own. I was thankful.

Or the first time a nurse allowed me to hold her. Yes, she was carefully positioned on a foam bed that separated her from my lap, but I was able to kiss her and feel the weight of her body on mine. I was thankful.

Or the first time I got to burp her. Yes, she had to be propped up sideways because her left leg was deformed and her back was still healing from her surgery, but I could kiss her warm head and take in her sweet smell. I was thankful.

The first time we brought her home. 18 days after she was born. We were all under one roof. Finally. I was thankful.

The first time I got to wash the upper part of her left leg after her casts corrected its position. I was thankful.

The first time I saw her beautiful smile. A smile that told me the fluid in her brain was not causing major damage. I was thankful.

The first time I held her after she came out of her second surgery, remembering I was 20 miles away during her first surgery. I was thankful.

And the first time I got to put those ruffle socks on her little feet, which were reformed and finally free of plaster casts. I was thankful.

On January 5, Brooklyn will go in for an MRI to evaluate whether or not her anatomy is conducive to a brain surgery we are now considering for her. I can tell you now, that on that day, I will be thankful.

I will be thankful for the medical professionals that will be taking care of my baby. I will be thankful for the family that will ensure my other two children are enjoying their day like any other day. I will be thankful for a God who knows the outcome of that test and every other minute of my Brooklyn’s life here on earth.

Yes, I will be thankful.

Not because I am that faithful -- but because God is that faithful.

No, I have no idea what the future holds for my Brooklyn, but I will forever be thankful that some day, the God who carried her throughout her life and mine, will lovingly embrace her as she runs into His arms.

Copyright 2010, Lisa Bonnema

“Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.”

1 Thessalonians 5:18

Wish Away

I get lost in her face. A lot.

The warm, soft cheeks. The sweet smell. The closed eyelashes that personify peace...perfect peace.

You mamas know what I am talking about. Those stolen moments when they fall asleep and fit just so on your chest. The warmth of their body against yours and the overwhelming realization that this piece of Heaven is yours. All yours.

Tonight, as the glow of the TV screen danced in the background, I breathed her in. I tried to breathe in the peace of her slumber, but instead I was left with a confusing mix of love and sadness.

I can't possibly express to you just how much I love my Brooklyn, but I can tell you that I love her so much, it truly hurts.

And if I am being honest, sometimes I wonder if I will ever love her without hurting a little. Not because I wish something else for me, but because the more I get to know her, her personality, the more I wish something else for her.

I thought this whole acceptance thing would be easier once she got here, but in many ways, it is harder.

As most of you know, Brooklyn got her casts off this week. I was so excited -- we all were. We decorated her casts the night before -- the girls had a ball! -- and we celebrated with brownies and ice cream and a bath when they were officially off.

Now we have bare legs and toes, and for that I am truly grateful. But she also has to wear AFO braces that hide those piggy toes during the day and a full body cast that we have to squeeze her into every time she sleeps.

And, well, that stinks.

I want to be selfish and just have her legs and toes all the time. I want her to feel me tickling her feet. I want her to be able to do one of her most important baby jobs comfortably and not in a plastic mold that leaves her totally immobile on her backside.

I want SO MUCH for her. So much, that it hurts. A lot. And this is only the beginning of our journey.

As I reflected on my emotions tonight, I realized that maybe all that hurt is a sign that I'm looking at this wrong. That I NEED to get lost in her face and not get distracted with wishing away the plastic.

After all, the plastic is of this world. But her face, her legs, her toes -- those are of God.

I need to rejoice in His creation.

The hurt is of this world -- and it is temporary. But my unconditional love for her is of God -- and it is eternal.

I need to rejoice in His promise.

Yes, I wish a lot for my baby. But I can't wish away God's plans. Nor should I. He has big plans for my sweet Brooklyn, and I want to be a part of that.

I will love, and I will hurt. But I will strive to do a little less wishing and a lot more rejoicing, for some day my child will have more than I could ever wish for her. Forever.

Rejoice in the Lord always. I will say it again: Rejoice! 
Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:4-7

Foto Friday: Rah, Rah, Rah!!

First of all, let me just clarify that the whole cheerleader costume idea was Emma's and has nothing to do with my -- ahem -- past.

However,  I must admit that I totally jumped on costume idea #107 as soon as I heard it...no princess?!!!! Whoo-hoo! Cheerleader costume ordering began 5 minutes later..before costume idea #108 surfaced.

Besides, the Bears could use all the extra cheerleaders they can get! ;)

So here they are: My three little cheerleaders. Orange and navy never looked so good if you ask me! :)








**P.S. We are soooo in trouble with this one...

Please Pray Today

*Reposted from the wonderful Colleen

October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

 

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.

We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:
1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.


“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” 
Matthew 18:19-20 (NIV)

My

Three

Reasons 

to 

S   M   I   L   E!

Home Again

...and resting peacefully. Thank you, God!



Surgery went well today, but I can't quite say I enjoyed one minute of it. Waking my baby out of a deep cozy sleep at 4:30am, withholding food when she was hungry, and watching a stranger walk off with her...not a fan.

BUT she was her usual rock-star self and only let us know every once in a while that she was not pleased with the situation. The surgery was nice and fast, and she didn't get sick from the anesthesia. She was pretty out of it when I first saw her, but after a little snooze and some nursing, she was back to normal...just a bit sleepier. And I really can't complain about that since it just means extra cuddles for Mommy today. :)

So another success for our little Brooklyn! Thank you, thank you, thank you for your prayers. We are very blessed to have them.

Surgery #2

Hi everyone! Just a quick update to let you all know that Brooklyn is having her second surgery tomorrow morning (Wednesday) for her clubbed feet.

As I have mentioned, she has been in casts for the last 6 weeks, and we are now nearing the end of the process. During tomorrow's surgery, they will cut her Achilles tendon to stretch it out and bring her feet up a little. She will then go back into casts for 3 weeks straight (up until now they've been changed every week), then she will be fitted for her braces. Once her braces are ready, the casts come off for good! That means we get to rub those piggy toes again and watch those miracle legs kick. We can't wait!!!

Tomorrow's surgery should be a minor outpatient procedure, but it does require anesthesia, so we ask for your prayers that all goes well. Also, the casting process only has about a 50% total success rate in children with Spina Bifida, so we ask that you pray that we are in the positive 50% (otherwise, there are more surgeries in our future).

We are a little anxious about our baby having her second surgery in just 2 months, but we are thankful that this one is minor and will hopefully get those feet ready for some future walking!

We will keep you posted tomorrow, and as always, thank you for your prayers!

Foto Friday: Wonderfully Made

She hates laying on her back and usually screams when you change her diaper.




She loves sleeping on her side and gives me a nice 7-hour stretch at night.

She eats like a champ, but spits up. A LOT.

 She is fussy for a good hour after she eats, but as long as you keep her upright, she chills out.





She loves noise and sleeps right through the chaos of two very busy sisters.

She smiles and coos, but usually only when looking at ceiling fans and right before she spits up.



She wakes up VERY hungry and has the most adorable complaining cry. (I admit, I often wait to feed her for a few seconds just so I can hear it. ;)

She loves her sisters and tolerates all of their rough lovin' very well.

She actually enjoys tummy time and has been known to take a little snooze while on her stomach (gasp!)...



She likes it when you rub her head, hold her hands, and sing softly in her ear.

She has the softest, warmest cheeks that are beyond kissable.



She is Brooklyn. And we love her just the way God made her.




I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
Psalm 139:14 (NIV)

Good

Today we ate dinner outside. The calendar says Fall, but it sure felt like summer, so we treated it like summer. We even had watermelon for dessert.

It felt good. Celebrating summer for all of its warmth, fun and sunshine. A final goodbye if you will. The leaves are falling and starting to change, but we needed a family send-off...all five of us.

It felt good. To remember. To move on.

Brooklyn got a new binkie today...a big-girl Nuk and not the NIC-U soothies she's been using for the last 2 months. She liked her new binkie just fine and didn't really seem to notice a difference. But I did.

It felt good to throw away the old binkies. It felt REALLY good.

...embracing change while remembering the seasons that got us to where we are now. And being thankful for today. For right now.

It feels good.


**Photo by the lovely Brookelyn***

Answered Prayer #2

I am writing this post for all of you, but I am also writing it for me. I need it. I have been struggling lately, and I too need to be reminded of these answered prayers, even when I am living with them every day.

I am grateful, but I want to be honest. This is hard.

If I haven't mentioned it yet, Brooklyn is wearing casts on both of her legs. They cover her entire legs -- from the waist down -- and they are true casts...like the ones you or I would wear. Heavy, heavy casts that add about a pound to my little baby. They clink together when I pick her up, and they scratch my belly when I try to burp her. There are no cute toes to tickle, and baths involve plastic Jewel bags and a wash cloth.

I miss her legs, her soft legs. I miss rubbing her piggy toes, praying that she could feel my touch. I miss the excitement of watching her legs kick and bend...grateful for every single movement. They weren't perfect legs, but they were warm and they were hers.

I thought that getting her started on the casting would be exciting. That we were getting her body ready for all the walking she'll be doing some day. But every week, when I watch a man take a saw to my baby's legs and then reapply heaps of plaster like some sort of art project, it all just feels so unnatural. A baby shouldn't have to go through this. A Mama shouldn't have to look at little swollen and bruised feet and the occasional open sore. She shouldn't have to feel both grateful and sad that her baby is not feeling any pain. It is hard, and it is unfair.

But you know what? It is working. Every time those casts come off, I see swelling, but I also see her little legs starting to take shape. Little creases are appearing on the backsides of her legs, and knees are forming before my very eyes. And better yet, THEY ARE BENDING!!! About a month ago, when we started the casting process, Brooklyn's left knee could not bend at all. In fact, it was hyper-extended, so we started at less than 0% "flexion." Now? Well, we can bend that knee a whopping 70%, and we are only half way done. How awesome is that?!

The weight of the casts have also put her hips in place, and her feet are slowly starting to move into position. Both feet were severely clubbed, but she developed pressure sores after the first few castings, so we have to take it slow. But we are seeing progress. There is a 50% chance that this casting process will not "stick" and that Brooklyn will still require surgery for her clubbed fee, but with the way our prayers are working, I'm hopeful we will see total success.

So how is all of this an answered prayer? Well, for those of you who have been following our journey since the beginning, you know that our first few ultrasounds showed no movement in the legs. It wasn't until our fourth ultrasound -- and lots of prayer! -- that a technician verified some movement. And then when Brooklyn was born, she was kicking away and even bending her right knee all by herself.

We know that she has hip flexors and quadriceps muscles, but it has been questionable whether or not she has "glutes" and it was pretty well agreed that she didn't have hamstring muscles.

BUT...

Last week when they were getting ready to put on the new casts, the orthopedic surgeon and I were discussing our next steps and she agreed that Brooklyn probably didn't have hamstring muscles. I hated hearing it, but I wasn't shocked. However, when they began applying the new cast, Brooklyn started to kick and fuss and I saw a smile come across our surgeon's face. "I don't want to get you excited, but I actually think I may be feeling a little hamstring here," she said.

What?! Wooooooo-whooooo! Of course, we have no idea if there is any strength in that muscle, but right now, I don't even care. Hope is what my heart has been surviving on this whole time, so I am taking that bit of news and rejoicing for all that it could mean for my baby. She is not going through this for nothing. As our ortho surgeon has told us, "She will be a walker."

And thanks to your prayers, I truly think she will be. While we were once told our child may be paralyzed from the waist down, we have now seen kicking legs, bending knees, and now maybe even working hamstring muscles. I mean, seriously, who knows what the future holds for our little peanut. NOTHING is impossible with our God.

I hold tight to these hopeful bits of news, but I am human and I admit that I still ask God for more. I don't want to get angry, so I ask for understanding. He often answers by revealing parallels that keep me humble and assure me we are not alone.

While odds are most of you are not waking up at 5am to get to the orthopedic surgeon, you are being "casted" as well. We are all are going through some sort of hardship, and if you allow Him to, God can use those hardships to mold you into the person He intended all along. There may be swelling and bruising along the way, but in the end, when the cast is removed, lives can be changed and God can be glorified. You just have to allow Him to do His work.

Do I hate those casts? Yes I do. Do I hate that there has to be sores and swelling and bruises to get to the end result? Yes I do. Will I miss them? Not at all. But these casts are giving our baby a fighting chance of beating all the odds. A chance to walk in faith, dance with praise, and stand in awe of a God who can heal us all.

Yet, O LORD, you are our Father. We are the clay, you are the potter; we are all the work of your hand.
Isaiah 64:8 NIV

His Ways Are Not Ours

Blogging about detours today at The Journey...

Answered Prayer #1

So I decided to write this little "series" on answered prayers for several reasons. First, I want to finally update all of you on Brooklyn's condition without it getting too overwhelming and complicated (for you and for me). Second, I want you to see that God can and does heal (and is very creative in doing so). And finally, I want you to know that YOUR PRAYERS ARE WORKING!

The first major answer to prayer is that Brooklyn still does not have or need a shunt (a tube that drains any spinal fluid that builds up in the brain). This is a HUGE plus. As I've stated in the past, shunts can definitely save lives if they are needed, but they can also cause death if there is a malfunction that goes undetected. In fact, the mortality rate of children with Spina Bifida is 25% -- which is pretty high -- and the majority of those deaths have been attributed to undetected shunt malfunctions/infections.

In the past, children born with excess fluid in their brains were instantly shunted. However, as I've explained in  previous posts, our neurosurgeon and her team believe that if given a little time, some children's bodies can find a way to deal with the excess fluid...and that is EXACTLY what Brooklyn is doing.

The reason this may be surprising is that Brooklyn's ventricles were quite large in my womb already (in the "severe" category), meaning that there was already quite a bit of fluid build-up in her brain. However, in my womb, she was also leaking some fluid out of the hole in her back (where her defect was). That means that post-surgery -- when they closed up that hole -- odds were that her ventricles and the fluid build-up in her brain were only going to increase since there was no leakage point to help "deal" with the fluid. All of those factors considered, the chances of Brooklyn needing a shunt were very, very high.

But God is so good. Get this: Brooklyn's ventricles have not changed AT ALL since her surgery. They have literally not budged in size. This is not typical. The neurosurgeon expected at least some increase, but instead, Brooklyn's ultrasounds have been "stone-cold stable." The look of subtle surprise on our neurosurgeon's face told me all I needed to know: Our prayers were being answered.

Now, there is a chance that Brooklyn may still need a shunt down the road. But every day she goes without one is a very good thing. The older and stronger she gets, the chances a malfunction or infection decreases. Some kids end up with hundreds (yes, hundreds) of shunt revisions because of infections and malfunctions, and we certainly don't want that. So every day Brooklyn goes without a shunt is a blessing.

Although we know what the future could hold, we remain hopeful. Our peanut's head is pretty large (95th percentile), but as long as it stays within the growth curve and she doesn't start to exhibit any symptoms that there is pressure in her brain, we are in the clear. The goal is to get through the first year of Brooklyn's life without a shunt. If we can do that, then odds are she will never need one. Wouldn't that be awesome?!

Our neurosurgeon has told us that if we don't shunt Brooklyn, she will most likely have a larger head (called macrocephaly), but that is not the end of the world. She's gaining weight like a champ, so she's "growing into it" quickly. :) And, quite honestly, we think she is cute as a button just as she is!






So there you have it. Your prayers are being answered!

And although you have all certainly done your part here, I can't help but ask for more prayer. I mean, they are working people!

So...we humbly ask that you continue to pray that Brooklyn won't need a shunt and that the fluid that is in her brain now does not cause any major cognitive challenges for her.

I can tell you with all of my heart that I will never ever again underestimate the power of prayer, and I hope Brooklyn's story encourages you to never underestimate our God. He hears and, yes, He answers.

And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it.
John 14: 13-14

Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.
James 5:16

Home Again

As most of you know, we are home!! As in, all 5 of us are now under one roof. I apologize for not posting the last several weeks, but, honestly, we have been busy being a family. :)

















I also admit that these last several weeks have left me with a lot of raw emotion I am still working through. When I decided to start writing about Brooklyn and our journey, I made a promise to myself and to God that I would only write when I felt lead to do so. I didn't want this to be contrived or sugar-coated. I didn't want to put on a show or write what I thought people wanted to hear. I wanted to be honest and share what God wanted me to share when He wanted me to share it. (Got all that?!)


So I haven't written. But that is about to change. God revealed a lot to me today, and I am encouraged to share again.

Because it has been a few weeks, there is a lot to tell, so I think I'm going to do a little "mini series" on how God has answered our prayers. Brooklyn is truly a testament to His power.

So stay tuned the next few days for updates on our little rock star and all that God has done because of YOUR prayers.

So good to be home again!