Jesus

I am starting fresh. I haven't written for a while, and there are lots of reasons for that. But, lately, I feel led to start sharing again. However, I don't want to share in a way that is self-serving or in a way that disrespects the privacy of my family. I have come to realize that is not what I want. And, really, those aren't the reasons I decided to start writing on a more personal level.

When I first decided to start sharing our testimony, I made a promise to myself and to God that it would be to glorify Him. I pray that in some ways, I did that. But I know that in other ways, I fell short. My intentions were mostly good, but they were also clouded with motivations that weren't entirely pure. When I realized that was happening, I stopped writing.

But I know now that I have to stop letting fear hold me back. If this is really what God wants me to do, then I need to just do it and trust. Even if that means someone won't like what I have to say. Even if it means someone will slap a label on me.

Honestly, I still don't know what all of this means and if it means anything, but I wanted a clean slate and that includes making sure we are all on the same page.

This blog has talked a lot about God. It has talked about prayer. I have even mentioned Satan (gasp!). But I have also written a lot of His and Him and He and thrown a whole lot of other capital letters out there that may have distracted from the fact that most of the time, I was really talking about Jesus.

Jesus.

It feels good to write it. If I am being honest, as more people read my blog, I wrote around that name. I did it in a way that made me feel like I wasn't denying my faith, yet I realize now that no matter how I creatively hinted at my faith, I wasn't exactly telling the whole story. Because, friends, Jesus is the story.

A few months ago, I decided to write a personal essay for a mainstream parenting magazine about my pregnancy experience with Brooklyn. It wasn't hard to write, especially since that is what I do for a living. As I wrote the essay, I purposely left out the details of my faith because as a journalist, I knew I had to write for my audience. So, instead, I focused on the mothering aspect of my experience. I wrote about the pain of Brooklyn's diagnosis and only briefly mentioned that my faith helped me get through it all.

After I finished writing the essay, I wasn't happy with it. I shared it with my Mom and even let her friend read it so I could get some real feedback. Yet even as I waited to hear their reactions, something in me knew I was never going to submit that essay. At first, I convinced myself that it wasn't good enough. Then I decided it would be exploiting my family. But now, after much prayer, I know that the reason that story fell short is because I left out the main character. I no longer want to do that.

Just to be clear -- Jesus is my Savior. He is the reason I have a testimony to share. He is the reason I have hope and joy and love in the midst of my heartache. He is the main character in my story, so He will be showing up here -- on this blog -- more often.

I know this might make some of you squirm in your seat a little. It might make you uncomfortable. It might make you roll your eyes or make assumptions about me and my life. But I can't let fear or rejection hold me back from what I think I am supposed to be doing here.

I don't pretend to know all the answers. I certainly don't pretend to be perfect. But I do have Jesus, and if there is one thing I can say for certain, He is all I need. My hope -- no, my prayer -- is that I'll get to tell you about that some time.

In Him,
Lisa

It is Well

You know when you build something up so much and expect it to be something big, but then, when it really happens, it ends up being nothing like you expected?

Well, that is exactly how Thursday was. Don't get me wrong, it was something big. I just never expected to be so excited, for the girls to be so excited, and to feel a wonderful rush of joy when my baby sat in her wheelchair for the very first time.

Yes, joy. Not the high-on-life kind of joy, but a content, deep-down realization that it is more than okay.

It is well.

Our "wheelchair guy" (not sure what else to call him) was about 45 minutes late for our appointment, so we were all pretty anxious. But once he arrived, the girls were peeled to the door, jumping up and down at one point, and yelling out to him on the driveway. The poor guy couldn't even get through the door without us physically moving the girls out of the way.



He finally made his way in, and that's when I saw it -- her name, embroidered in pink right there on her seat.  What a beautiful, thoughtful surprise. We never asked for it, but it was a personal touch that made us instantly fall in love with this vehicle that was going to change our girl's life. (The metallic fuchsia accents didn't hurt either.)



Then our wheelchair guy tried to fit Little Miss, and the booger couldn't even sit still. "I try, I try, I try," she kept saying. She knew just what to do and wanted to go. He even put down the breaks, but she figured those out, too. At one point, Jeff walked out of the room and when he came back in, she confirmed what we all could clearly see... "Daddy, I wuv it."



Finally, she got her chance, and she was off. She instantly went to the Christmas tree to touch some of the ornaments she's been dying to see up close. Then she went straight for the front door and started playing with the door handle and the locks. Then she went to the fish tank to "feed the fish."

All things she's been wanting to do, all things I've helped her do, but now she could do them all by herself.

Yes, it is well.

Now, just a few days in, the girl is turning corners and operating her ride like it's an extension of her body. She still gets stuck, but the rule is we don't help her unless she asks -- a rule she pretty much made all on her own.



She really does love her wheelchair and asks to be in it all the time. She can reach, touch, and see things she couldn't before, and it is just so much fun to sit back and watch. Tomorrow is the first day we will be taking her wheelchair outside of the house, and I can't wait to see her face as the world opens up to her.


 
In case you were wondering, this doesn't mean we are giving up on walking. Now, more than ever, we will make sure she is on those legs every day. It is good for her joints, for her growth, and for her physical health. Eventually, we may end up setting up "rules" so that she only uses her chair when we leave the house to make sure she stays active, but it's way too early for that. For now, we are giving her as much freedom as she wants. Girl has earned it.

What's amazing is that just one week ago today, I had a pretty sad day. There was lots of blubbering and lots of chocolate. But it just goes to show that when you actually allow yourself to be honest about your feelings -- no matter how much they hurt or how much you try to hide them -- you not only get past them, you can actually heal.

When my mother-in-law saw Brooklyn in her chair for the first time yesterday, she so beautifully stated, "It does my heart good to see her."

I honestly couldn't have said it better myself.

It is well.

Forward

"Look, Mama, I standing!"

My head snaps up, and what I see makes my heart swell with pride and break all at the same time.

She is bent in half - her strong, little arms bearing the weight of her entire body, making her feet flat on the ground but pushing her butt straight up in the air.

"Yes, baby, you are."

---

It is coming. I can feel it. Her body isn't keeping up with her brain, and I can tell she is noticing. It is motivating her for now, but I can feel her heart beating in mine. Her sweet little heart. Right now, it is whole and strong and innocent. But I fear the day when the cracks begin because I know what they will do to my heart.

Her wheelchair has been paid for and is on its way. Hopefully we get it before Thanksgiving so I remember to be thankful. I know she is more than ready for it. I can see it in her determined eyes, hear it in her demanding voice, and feel it in her powerful pushes as she sits in her stroller.

They also tell me she will qualify for 5 days of preschool next year. As in next fall. In less than a year, my 3-year-old baby will be pushing her way up to the school bus in her wheelchair, totally independent and ready to take on this world.

We are moving forward. I want so badly to put on the brakes, but I know I can't...that I shouldn't. This is called progress, and I know that means we are getting closer to His plan for her life.

This isn't about me; it's about her. And Him. When I remind myself of that, I know this journey is going to be nothing short of awesome. Together, they are going to rock this. I just need to be there when she needs a little push.


~linking up with just write

Learned

Like most people, there are certain life lessons I have to keep learning over and over again. But this year, as I look back, I can honestly say I have spent the last 12 months embracing a lesson that my heart so needed to learn.

Life, as it turns out, doesn't go as you plan. And no matter how hard you try to control it -- even the little stuff -- something will almost always get in the way.

I think I am finally to the point where I know that life isn't about the moments you orchestrate or the moments when everything goes perfectly. Life is about seeing everything else -- the stolen moments, the side views, the imperfections -- and realizing that this is where the happiness, the beauty, the REAL breathes.

 
For me, it is these moments that confirm that there something much bigger than me out there, reminding me of my humanity and giving me glimpses of His sovereignty. No matter what happens (or doesn't happen), there is unconditional love and joy and oh yes peace(!) waiting for me, if I am willing to surrender my preconceived notions of happiness and all the "shoulds" of my life.

Now, that's not to say I don't still love me a day filled with "to-dos" that get done or a picture-perfect smile. But I can now loosen my grip enough to enjoy every part of my beautifully imperfect life.

Four

There was no way Miss Kendall would let me get away with not making her a birthday slideshow of year number 4, so here it is. It makes me cry.

Happy 5th Birthday, Kendall. You are a wonderful mix of sugar and spice, with some slugs and snails thrown in for good measure. I love you!

P.S. This is her favorite song. Just ask her 3-year-old preschool teacher and friends, who got their very own performance last year. ;)

Twist

When Brooklyn was born, she had clubfeet, a common complication associated with Spina Bifida. Her legs, knees, and feet were not in the proper position, which made it difficult to change her diaper and to hold her comfortably, but it never seemed to bother her at all.

At the time, we lovingly called her "Twisty, Twisty," but I'll admit, this was probably one of the most confusing parts of our journey. We, of course, loved her no matter what her legs or feet looked like, but I didn't know the "right way" to handle it all. If I hid her feet, I felt like I was acting ashamed, but if I let them show, I felt like I was flaunting them and asking for attention. Plus, there was so much more to my baby than her twisty legs. I wanted people to see past them -- but, honestly, I wasn't quite convinced they could.

Extensive casting, molds, braces, therapy, and a few surgeries have helped correct the position of her feet and legs, but this continues to be  -- and most likely always will be -- a challenge for our rock star. However, what we have done so far has gotten her lower body ready for our ultimate goals -- standing and walking.

Based on muscle tests and Brooklyn's abilities, we don't think she has any feeling below her knees, and she is showing no signs of gluteal muscles. This means she is unable to stand independently, which has made walking more difficult than we had hoped. It also means she can't feel me tickling her tiny feet, and she has no idea when she gets a scrape on her leg.

None of this, however, has stopped Brooklyn from getting where she needs to go. Sister is making it work. She gets into cabinets, unrolls toilet paper, and (as some of you may remember) loves doing gymnastics. Her current favorite activity is pulling herself on and off her therapy bench. (Little does she know what great exercise this is for her!)

I swear, Miss Brooklyn sees no obstacles. She just sees opportunity -- a trait that will no doubt take her anywhere she wants to go.

Life

Here is our Brooklyn, not even 24 hours old yet, recovering from her first major surgery.

Brooklyn has myelomeningocele, the most severe (and common) form of Spina Bifida. Basically, while she was forming in my womb, her spinal cord did not close properly, causing nerves to be exposed and an irregular flow of cerebrospinal spinal fluid. That means part of her spinal cord was literally sticking out of her back, causing nerve damage and permanent paralysis.

When Brooklyn was born, she had to be wrapped in plastic and could not be held. She also had to be immediately transported to a children's hospital to have surgery to close the opening in her back. I was able to see her for five minutes -- just enough time to hold her little hand -- before the nurses rolled her away to the ambulance. I wouldn't see her again for two very long days.

Myelomeningocele may affect as many as 1 out of every 800 infants. The levels of nerve damage and complications vary by individual and can take time to identify, which makes waiting a very big part of Spina Bifida.

The causes of MM and other forms of Spina Bifida are unknown, but they have found that prenatal vitamins with folic acid can decrease the chances of occurrence. The tricky part is that it happens very early in pregnancy, typically before a mother even knows she is pregnant.

If you want to read more about Spina Bifida, you can go here. I also wrote this blog post shortly after we found out about Brooklyn's diagnosis. I promise you there is much more to the story than a bunch of facts and statistics, but I wanted to start here, with the basics.

Because of the compassion of a nurse, I was able to hold Brooklyn the day we were reunited. Yes, there was a foam layer between us, but in that moment, I realized just how very precious life is. Every life. 

I realized how thankful I was just to have her. Nothing -- I mean nothing -- else mattered.