Little Better

As she buried her head in my chest, I felt her shakes and I knew they were real. The tears were falling from a child, but the cries were from a grown-up place that I often wish my 6 year old didn't have to visit.

I knew she had been struggling lately, that something was up. But it wasn't until a walker stood between her and a much-anticipated tea party that I saw her heart.

"Why does she have to use that, Moooom. Just take her out so we can get started."

I knew right then and there that all of this "rock star" walker business was getting to her. My heart ached at the thought, and my tongue was tempted to quickly "fix" her hurt. But this wasn't the time. The table was set, the Princess music was already on full blast, and Kendall was anxiously waiting to do her welcome dance. So we all sat at the table, poured "tea" into mini tin cups and shared Rice Chex and raisins as if everything was okay.

It wasn't until a few days later that I saw my chance. Jeff had sent Emma to her room for disrespecting him, and I quickly suggested that I do the "sit down" with her this time. After we talked about her behavior, I only had to mention Brooklyn's walker before she broke down.

"Why does she have to have a walker? Why can't she just walk like you and me."

We had one of these kinds of conversations soon after Brooklyn started physical therapy, but that was before there were standers and walkers and lots of people acting like these were all good things. To an innocent heart and a praying big sister, these weren't good things at all.

So we talked. We talked about Faith, we talked about miracles, and we talked about Heaven. We talked about sister love and playgrounds and God's plan and dancing. We hugged and we cried, and when it was all said and done, she answered one of my greatest prayers in just seven simple words.

"Mom, you always make me feel better."

Today, instead of playing Barbies with Kendall, she sat on the floor and played with Brooklyn until her bus came. When I told her it was time to get her coat on, she kissed Brooklyn on the head and promised her they would play some more as soon as she got home from school.

As Emma closed the door behind her, Brooklyn called out for her -- "Me-maw!" -- and started to inchworm crawl her way over to the door. Emma caught it all out of the corner of her eye and ran back, sneaking in one more kiss on her baby sister's head before skipping up the driveway and heading off to 1st grade.

~Linking up with Just Write.~

Rock Star

 

They said there was no way to know her abilities. What she will or won't be able to do.

Every case is different. Every child is different.

Wait and see. Wait and see.

Well, we have waited, and now we are seeing. Seeing miracles. Perhaps through a different lens than the rest of the world, but we are seeing miracles.

From the first day she kicked those legs, to the first day she sat up, to first day she scooted across that floor, to the first day she stood tall and proud.



And now we are here. Walking. A place that looks different than I ever would have imagined, but a place that is more beautiful than I ever could have dreamed.

Of course, there will be more milestones. More independence. More work. But I have no doubt she will amaze me every single time.

Just weeks ago, they said that she was "too young" to start using a walker.

"Mrs. Bonnema, these kids with Spina Bifida aren't typically ready until 24 months, sometimes 3 years old."

Well, my dear surgeon, perhaps you have forgotten what you told me 2 years ago. Words I have hung onto every day of her existence.



Every case is different. Every child is different. 

She is different

and motivated

and stronger than you or I will ever be.



And perhaps, my dear surgeon, you haven't met my God. Because He? Well, He can do anything. Through you, through me, and most certainly through these kids with Spina Bifida.

They are rock stars. Every one of them. Not because of their challenges, but because of how they overcome those challenges.



Our rock star has decided to skip the part where you fit her for a more mobile form of bracing. We will get fitted for that next week, but until then, she has decided that she's not waiting for anyone to tell her what she is able to do. All she needed was some wheels, and thankfully God provided us with a therapist who ignored her age and her diagnosis -- and only saw her abilities.

Apparently "wait and see" isn't on Brooklyn's agenda.

Yeah, total rock star.




Linking up with Small Style...
T-shirt: Okie Dokie (gifted)
Leg warmers: hand-made (gifted)
skirt: Baby Gap, niece hand-me-down
hair bow: Adornmegirl
shoes: Pedoodles, Kendall hand-me-downs

Spark

Last week, when we were at clinic, I saw an adorable little girl in leg and hip braces, pushing a walker, and I couldn't help but smile. Her mom followed as she confidently led the way, knowing exactly where she wanted to go and almost taking a few toes out along the way. This girl had a destination!

First, it was full speed ahead to the table with the over-sized checkers board, where she took a seat with her mom. But she immediately switched gears when she spotted a waving baby. I watched as she got back into her walker and eagerly rolled over to the baby. She then flipped down her seat (that was part of the walker) and thought nothing of striking up a conversation with the baby and his family. And there she sat chatting for the next 15 minutes, beaming as much light as when she first walked in.

Clinic days are interesting. They reveal the crazy spectrum that is Spina Bifida, ranging from kids with no signs of physical challenges that are there for a quick urology check up, to incapacitated kids with feeding tubes and reclined wheelchairs. Most of the time, I leave thankful for Brooklyn's health and praying for the little ones with much bigger struggles.

When they called us in for Brooklyn's ortho appointment, I couldn't get the image of the little girl out of my mind. It was an image I have seen many times in my head, and I couldn't help but ask the question I knew better than to ask:

"I know you're only guessing, but based on what you see so far, what do you think Brooklyn will be able to do?"

Our orthopedic surgeon smiled and gently told me that it depends on the muscle strength we see in the coming months. But as I pressed her, she added that because Brooklyn is already able to sit up independently, she should be able to walk with assistance. We just aren't sure what that "assistance" will mean. There will definitely be braces of some kind and a walker involved at some point, either as a bridge to crutches or as her main mode of transportation. And, of course, there is always the possibility that she will need a wheelchair, even if it is just for long distances.

Her answers didn't surprise me. In fact, I pretty much knew what she was going to say, but something made me ask. I admit that for the last 6 months, I have basically predetermined what I think Brooklyn will do. It's not like I've completely lost hope -- trust me, I still pray BIG -- but I kind of felt like I just knew. A Mama's heart can feel that stuff.

Later that day, Brooklyn had physical therapy. Nothing special, just our typical weekly therapy. But during stretching, I watched our PT's face light up.

"I think I just felt something new twinge."

My heart stopped.

"I think I might have fired a hamstring."

Now I was choking back tears. You think I'd be used to this by now. Even now, as I write, the tears are falling.

It wasn't until that moment that I realized perhaps I had lost a little bit of hope. It's a difficult balance -- hoping and accepting. We had heard early on that maybe Brooklyn had some hamstrings, but further unofficial "tests" didn't confirm that, so I figured we were all quads. And although I want every muscle we can get, quads are all we need to walk. So I was good with that.

But to think there was still a chance for more? To think for a second that my image was wrong. Well, that was a m a z i n g.

Like anything in life, I'm not sure there is a "right" way to navigate through this journey, but I do think that a spark of hope every now and then is good for the soul, even if it turns out to be wrong.

This week, Brooklyn has started to experiment going on all fours, bending knees that never really existed when she was born. We are bumping her PT appointments up to twice a week, and I can't tell you how excited I am to see what she can do.

We also have a muscle test coming up in January -- her first one since the day she was born. I am both excited and scared to see what we find.  I am fully aware the results may prove our PT wrong -- and my heart is ready for that (I think) -- but my hope, my prayers will still be that Brooklyn proves all of us wrong.

Happy weekend, everyone!

 

(Shhhhh!)

Standing on the Promises

I kinda wish I could have posted her naked because really, I don't give a flying fig what she is wearing right now...

SHE IS STANDING!

It is wonderful and strange and humbling and absolutely amazing to see my baby standing on her own two legs. She just looks so tall, so much older, and oh so beautiful...my heart overflows.

She may need a little help for now, but it doesn't matter. I can see it now, right there in front of me. His plan. He's whispered, painted images on my heart since we found out about our rock star, but to see it happening -- with my own two eyes -- well, it is enough to send me to my knees. Or better yet, stand in awe...with my baby.

I no longer have to imagine. It is happening.

She may always need help, but that's okay. I don't care. At least not today. This isn't about what the world thinks is "normal." None of that matters. Not anymore.

It is about what He can do. What she can do. What they will do together.

It's about seeing the miracles...whether that means beating the odds, or simply taking advantage of the medical advances our generation is blessed enough to have available.

I don't care.

SHE IS STANDING.

Making it Work...
Onesie: Carter's (Target)
T-shirt: Cherokee, Emma hand-me-down
Pants: The Children's Place, niece hand-me-down

Hello, Sunshine

Well, we are back this week linking up to Small Style at  Mama Loves Papa. Sorry we missed last week, but you know, we had some extra snuggling to do after the whirlwind of surgery. We did have a little excitement Friday and ended up back at the hospital with a high temp, but we were home before midnight and back in our own beds, which is always a blessing to this mama.

The temp is now gone, and our rock star is on the mend. She is already trying to figure out how to scoot around on those bandaged legs! Obviously these photos were taken pre-surgery, but trust me, we are finding ways to rock those casts. Stay tuned!



I have to admit that there is always this "down time" for me after we go through surgery or one of our Spina Bifida "reality checks." The adrenaline (and the prayers!) get me through it all at the time, but it's the "after shock" that tends to be hard on me emotionally. Life does indeed go on, but my heart needs a few days to get back into the swing of things.

Although part of me feels weak for not jumping back in full force with thanksgiving, the other part of me is starting to realize that a little "down time" is probably healthy. It gives me time to feel, to reflect. I mean, one minute I'm sending my baby off in a stranger's arms to be operated on for almost 5 hours, and the next day I'm getting Emma off the bus and searching for misplaced library books. It's all a bit much for any one person to process.

But as I seek Him to guide me through this journey, He -- as always -- is enlightening my perspective and easing the burden. The clouds are now parting, and and I am starting to see the rays of sunshine. And although I'd love to think that someday this might all become second nature to me, somehow I don't really think that will be the case. My trust in Him might grow as we get farther in this journey, but I have a feeling my human nature will always take me back to Him, asking for His help, His encouragement.

And, really, isn't that the point?

Making it Work... 

Shirt:   Carters (1st b-day gift)

Pants:  Baby Gap (niece hand-me-down)

Shoes: Star Child from Urban Baby Runway (Emma hand-me-down)

Surgery Success!

Well, we finally made it to surgery #4, and it was a success. Brooklyn is now recovering and should be heading home first thing tomomorrow morning. She is still pretty hoarse and drowsy from the anestesia, but Little Miss Nosey is too busy checking everything out and hasn't been interested in napping. She just finally decided to get some much-needed rest. I'm hoping she sleeps well tonight.

So far, she is being a good sport about her legs, and we are hoping that continues for the next 7 weeks. She will be in splints (half casts) for about 2 weeks and then full leg casts for another 5 weeks. After that, the casts come off, and we get to work on standing!

As always, thank you so much for your prayers these last few weeks. They are powerful, and they are being answered.

Much love to all of you!

On the Move: Take THAT Spina Bifida!

Guess who decided to move just a few days before we put heavy casts on her legs!?!! And she did it when Mommy wasn't home, the little booger. I can barely watch this without crying my eyes out.

I wish I could describe the overwhelming sense of gratitude my heart feels, but words could never do it justice. I am so very, very proud of our rock star, and I am so very, very thankful for a God who answers my prayers.

I'll let the video say the rest.



"Be joyful in hope, patient in affliction, faithful in prayer."
Romans 12:12

Prayer Request: Brooklyn's Surgery on Wednesday

 Once again, we humbly come to you and ask you to say a prayer for Miss Brooklyn, who will be having surgery on Wednesday. Thankfully, it is only foot surgery, but they are estimating it will take about 4 hours and, of course, she will have to be put under.

She will be having surgery on both feet, although they will most likely do more work on her left foot. The name of the procedure our surgeon will be performing is Posteromedial Lateral Release, which basically means she will be making Brooklyn's feet flat and straight. Unfortunately, the Achilles tendon surgery Brooklyn had last year to flatten her feet wasn't successful, and her clubbed feet that were corrected with the casts have started to turn in. This surgery is necessary to correct both of those things so that she will be able to properly stand and bear weight on her legs.

We also ask that you pray for Brooklyn's recovery process, as she will have pins in her feet, as well as splints and casts on her legs for 7 weeks. We aren't quite sure how this will go over with our little rock star, but we are hopeful that she will be her usual rock star self and "make it work"!

The good news is that once she is fully recovered, we will be measuring her for a stander, which is very exciting! Because she lacks feeling in her lower legs (below the knee), she doesn't quite understand that she can use them to stand. But once her feet have been corrected, we will be able to teach her body what to do by using this device. What a joy it will be to see her standing on her own two feet some day...we can hardly wait! I have a feeling she is going to love being off the ground and closer to her two big sisters!

For now, Miss Brooklyn more than enjoys sitting up and playing independently. And as of last month, she can even push herself up from the ground all by herself. We are so proud of her! She isn't attempting to crawl since her knees don't quite want to bend the full 90 degrees, but she is starting to get curious about moving around. We are working on her core strength to help her accomplish that, but it is more likely she will "scooch" or army crawl instead of a 4-point-crawl. As with all things Spina Bifida, we will just have to wait and see!

As we prepare for Wednesday, we ask you to pray for any (or all!) of the following:

1. God's protection during the surgery and as she comes out of the anesthesia
2. A successful and peaceful recovery process -- no complications
3. God's miraculous intervention to restore all nerve and muscle functions (We have to ask! :)
4. Peace for us during the surgery
5. Peace for Emma and Kendall as they spend time away from us and as they pray for their little sister

Thank you all for your continued love, support, and prayer. We cannot express how much every one of your prayers means to our family. Sending our daughter into her fourth surgery (eek!) is definitely not an easy task, but we feel God's love and power through all of you.

We will keep you all updated on how everything goes on Wednesday. Thank you so very much, and may God bless you all!

Photo credit: Erin Olson Photography

"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Philippians 4:7

Take THAT Spina Bifida!

Seeing the Promise

Remember this post? Well, the other day Emma spotted this in the sky, and I'm not sure if I was more captivated by its beauty or the fact that He allowed her to see it before any of the 100 other people at the park. She spread the word, and we all stood in awe.



Yes, this photo is real, and, yes, I actually took it. But, honestly, I just clicked. The beauty...well, that's God's doing people.

Enjoy.

(Linking up to You Capture: Pretty today.)

Climbing

So I realize that I haven’t been very good about updating all of you on how Brooklyn is doing physically. It hasn’t been on purpose. Most of the time, I’m just too tired to type it all out, and sometimes…well, I just don’t want to. Or, rather, I’m not ready to. But after seeing all the wonderful comments about the photos I posted a few weeks ago with Brooklyn sucking on her toes, I feel I at least owe you a quick explanation of how our little Rockstar is doing.

She has been a busy girl the last few months. She has physical therapy once a week for her gross motor skills and occupational therapy once a week for her gross and fine motor skills. She is delayed a tad on both, but that is to be expected since she is still building up her core strength. Her casts and her head size put her at a disadvantage from the start, and because she is missing leg mass (muscles), her center of gravity is off. Needless to say, she is working hard to catch up.

She can roll over from belly to back, but when it comes time for back to belly, she struggles. She tries so hard to do it, but her legs get stuck and she needs a little help getting them out of the way.

She is definitely kicking and can bend her legs at the knee, although both take some effort. It’s pretty clear that she doesn’t have any feeling in her feet or toes, but that doesn’t keep us from tickling, rubbing, and praying over them every chance we get. We’re not sure if she has any feeling between her ankles and her knees, but she definitely has feeling in her quads, as evidenced by her giggle every time they get tickled during a diaper change. According to our physical therapist, quads are all that she needs to walk.

She is THISclose to sitting all by herself, and I am so proud of how far she has come in just a few months. She no longer cries through her therapy sessions and is happily interacting with toys and her therapists. She still, however, hates tummy time, but she is starting to tolerate that more and more.



We have done some weight-bearing leg exercises, but because she lacks feeling in her feet, she doesn’t quite understand that she can support her body with her legs. So we are going to have to teach her legs what to do—and that will take time.

She will also need to have surgery in the next two months since her first foot surgery didn’t take, so she will be back in casts right around her first birthday. A bummer for sure, but the good news is that once she is out of the casts, she goes right into a stander, which gives us a huge incentive to get her feet where they need to be.

I have to admit, watching her work isn’t always easy. I know what my other girls were doing at this age – Kendall was practically walking – and I am trying hard not to go there. There is just so much that I took for granted. And then, of course, I see other babies her age crawling around and standing, and we aren’t anywhere near that.

I’m not going to sugar-coat it…all of that hurts. Up until now, the differences have been minimal. Brooklyn has been just like any other happy, kicking baby. But now…now the things we feared the most are starting to surface and, well, that can take its toll on a mama’s heart. Honestly, it has been taking a bit of a toll on all of our hearts.

But as I am learning, this is all part of the process of acceptance. I am learning it is okay to hurt and not be Miss Positive all the time because if I am really going to work through this in a healthy way, I’m going to have to admit that I do get sad. I do get frustrated. And I do get disappointed.

In many ways, I feel like we are climbing a mountain. Sometimes we are full speed ahead with our eyes on the prize, while other times we are exhausted, trying to find our way around a bump, or just need a break. All of that is part of the journey.

At this week’s physical therapy session, our therapist did something new. She propped Brooklyn’s arms up against a chair as she held her legs straight, and it looked like she was standing on her own. And in that moment, I got to experience a new part of the journey—the mountaintop.

I can’t tell you what an awesome feeling it was to get a glimpse into Brooklyn’s future. My heart felt like it was literally going to burst. I was so proud I could barely contain myself—and she wasn’t even really standing by herself.

Not yet, that is.

This journey is rough and I know it will be long, but I now know that it will be those mountaintop moments that will make every rough patch, every bump, every stumble more than worth it. As a man I respected very much used to say, “Onward and Upward!”

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!

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.

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)

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!