Sunday, December 14, 2014

Answered Prayers!

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

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

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

Tuesday, December 02, 2014

Waiting

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

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

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

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

Monday, October 27, 2014

Move

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

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

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

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

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

Monday, July 14, 2014

We Need Your Help

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

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



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

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

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

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


(You can donate by clicking here.)








Saturday, June 14, 2014

Shine

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

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

On a stage.

In all of God's glory.

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

Yet here she is, dancing.

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


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



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

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

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

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

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

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

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

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

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

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


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

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











Wednesday, June 04, 2014

On Trial


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


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

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

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

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

But then there's that verse...

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


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

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

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


Friday, April 25, 2014

Possible

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

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

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

Praise God, it is possible!


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


ALL THE THINGS, friends.

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


To God be the glory!




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