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

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.

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.

“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.