Saturday, December 08, 2012

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.

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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.)

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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."

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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.

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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.

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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.

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Wednesday, November 07, 2012

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."

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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



Thursday, November 01, 2012

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.

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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.

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Friday, October 19, 2012

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. ;)

Friday, October 12, 2012

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!)

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


Thursday, October 04, 2012

Life

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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.

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Wednesday, October 03, 2012

Aware





So October is Spina Bifida Awareness Month. It is also Down Syndrome Awareness Month and Breast Cancer Awareness Month. And as much as you might think that all of those causes sharing one month might water down the effect of having an awareness month, I actually think it’s kinda perfect.

Sometimes I hesitate to talk too much about Spina Bifida because I don’t want anyone to think that I believe we are the only family in the world dealing with challenges. In fact, one of the surprising benefits of our journey has been how much compassion it has brought to my heart. I will never forget sitting in the neuro intensive care unit when Brooklyn was only a week old and hearing the cries of other children. Yes, I would have given anything to have my baby unhooked from those monitors and in my arms at home, but I also would have given anything to ease the fears of the 10-year-old girl next to us or to take away the pain of the 4-year-old boy three curtains down.

It wasn’t until I sat in that hospital with Brooklyn that I realized just how many children—how many families—spent time in that very same building. The amount of surgeries that were being performed. The amount of nurses doing life-changing work. The amount of fear and hurt and trust and hope that flowed through the air I was breathing. It blew my mind and heart to pieces.

And I took that with me when I left that building. I feel things more deeply now. Basically, once my world was rocked, I realized just how many other worlds are being rocked every day.

So, on a month when I am supposed to be spreading awareness about Spina Bifida, I am honored to be doing so along side other advocates that are also spreading awareness about causes that are just as important.

No doubt, this month is a special one. We celebrate the courage of every cancer fighter, the beauty and joy of those with an extra chromosome, and the power of focusing on abilities, not disabilities. Maybe there is even another cause I am missing, and if so, that is even better.

To me, that is the whole point of spreading awareness. It’s not about making one cause shine more brilliantly than another. It’s about being aware that we are all dealing with challenges in our lives. It's about acknowledging differences but understanding that at the same time, we are all struggling in some way. That paying attention and caring can go a long way in making this life more joyful for everyone.

Why should you care about Spina Bifida? It’s a good question, and it is one that I have asked myself the last two years. Why should I spread awareness about something that doesn’t directly affect other people? Do they even care? Maybe not, but of course, that is precisely why I need to tell you about it. And I hope to do that in different ways throughout the month.

Here’s what I know: Now that my eyes have been opened, I care about a lot more than just Spina Bifida. I care about autism and Down syndrome and CHARGE Syndrome and cancer. The fact is, the more I am aware, the more I care. And the more I care, the more I am willing to do something about it—whether that means sending a friend a note of encouragement, making a meal, or praying in the quietness of my heart. Maybe some day I will do more than that, following the footsteps of my friends Tricia, Erin, Alyson, or Katie or my cousin Kevin—people who are actively raising money, raising awareness, and showing compassion in ways that are truly making a difference.

But for now, I will use my little space on the Internet to tell you about our Brooklyn and how she is proof that nothing—not even Spina Bifida—will take away the person God intended her to be. She, like every other individual out there, has something to offer this world. Her challenges are different than yours, but as she has already shown us, her goal is the same as yours. And that is to rise above those challenges.

Awareness isn’t about knowledge or pity. It’s about acceptance and compassion.

So take the time to look around you. Be aware. Listen, care, and even better, go do something about it.

Wednesday, September 19, 2012

Six

This is a over a month late, but I could tell a certain 7 year old was feeling "unspecial" when I caught her watching Brooklyn's 1-year slideshow yesterday morning. And now, of course, Kendall is counting the days until her birthday so she can get one, too. I guess since I have totally dropped the ball on their baby books, this is the least I can do! (Even if it is totally amateur... :)

I love you, Emma Kay. Your passion will always inspire me.






Thursday, August 16, 2012

Today


With every birthday, I watch them grow, stacking up their days into taller piles of milestones and memories, mistakes and miracles.
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With every candle added, I see their light shine brighter and only hope that I can find ways to feed the flame that makes them special, that makes them feel special.

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Among the sprinkles and tissue paper, I see their joy, their innocence, their genuine gratefulness for this life. For every day.

And I learn. 

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The blessing of these blessings, growing with each and every year. 

I close my eyes and wish that in the midst of the crazy and the confusing, I remember to treasure it -- all of it -- now. 

Today.

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Before another candle is added.

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Friday, June 15, 2012

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It's funny the way God works sometimes. I have about four unfinished blog posts saved in my cue, most of which are no longer than a few short sentences. Others have been fully written in my head, but haven't even made it onto the screen. No matter how many ideas kept popping into my head this past month, something has kept me from posting anything since my last entry. It's almost like I needed that entry to float around here for a while. Like I needed it here, waiting for me, so I could absorb all that it meant before moving forward.

I meant -- and felt -- every word I wrote in that entry. Yet, it wasn't the whole story. Just a half-step toward a full blown leap of acceptance I wasn't ready to take yet -- and certainly not one I was ready to share.

Last week, I took that step. And today, I feel ready to share it, although I admit that  the feelings are still pretty raw. Actually, I don't know if "being ready" has anything to do with it. I just feel like I need to share it. My head -- and my heart -- need to release.

So here goes...

Brooklyn has spent the last few months working her butt off. A physical therapist comes to our home twice a week to work with her for about an hour, but I work with her every day for about 1-2 hours, depending on how crazy things are around here. This includes time in her stander for weight bearing and time in her RGO brace and walker to practice walking. It's a part of our daily schedule, and the girls have even helped me find creative ways to keep Brooklyn motivated and happy. As you can imagine, those moments are the ones that make it all seem worth it. Not only because Brooklyn is getting stronger, but because I see Emma and Kendall at their very best...and perhaps I see the best in myself as well.

If you have followed our journey at all, you know that Spina Bifida is all about waiting. There is no real way to accurately assess nerve damage and physical limitations, so you just have to wait and see. Sometimes it's a matter of therapy and muscle strengthening, and sometimes it is a matter of what I have started to call "heart strengthening." In other words, it's a matter of acceptance.

I have said before that there have been images in my heart of what Brooklyn's future will look like. Those images have included a little girl with pigtails walking with arm crutches. Maybe a wheelchair for longer-distance adventures like the zoo, but for the most part, in my head -- in my heart -- she was able to walk with little assistance.

Back in January, when we had our muscle test, there was really no trace of any gluteal (butt) muscles. I have said all along (and was told) Brooklyn has strong quad muscles and that's all she needs to walk. That is true; however, you need gluteal muscles to stand.

As Brooklyn and I have worked together these last few months, I have been amazed by her determination; the way her mind wills her legs to "KICK!" even when the rest of her body isn't quite able to keep up. She can kick, yes, and she can move forward, but her back is very arched and her balance isn't secure enough for us to just let her go. She wants it -- we all want it -- but her body has its limitations. That's just a fact.

So I finally asked the question the other day. The question I know my PT and our other specialists wait for us to ask because they don't want to make any predictions and maybe because they know we need to be ready. So I asked, and it looks like we need to start thinking about ordering Brooklyn a wheelchair.

I've struggled the last few weeks over my fear of this word -- this new image -- when I've known it was always a possibility. Some of you reading this may even thinking, "Duh, of course, she needs a wheelchair." But this whole hope/acceptance balance thing is tricky. I have tried my hardest to take one step at a time and I know God can do anything, but I am learning that at some point, there are realities you have to embrace just to get through it all.

I'm not really sure what I've struggled with more -- my disappointment or the shame of my disappointment. If the goal is to give Brooklyn independence so that she can get wherever she needs to go, does it matter how she gets there?

Well, to a Mama's heart, it does matter. Honestly, my heart is broken. And still breaking. The tears are falling as I type, and I hate that. I know this shouldn't matter. I know Brooklyn is happy just as she is, and I know God has a plan. But it still hurts. A deep, throbbing hurt that turns my stomach and makes me feel utterly helpless. Sometimes, I feel as if I failed her. I know in my head it is not my fault, but my heart doesn't quite agree. I am her mother -- the one who carried her -- and if you too are a mother, you know that this is a feeling you really never escape.

And since I am laying this all out on the table, I might as well tell you that this whole acceptance thing happens in waves. Just when you think you have it under control -- BAM! --something hits you and the pain is as raw as it was on that first day. This time, there were actually two waves of grief. The first was just the overall disappointment of her challenges, while the second was the one that compares her to all the other little Spina Bifida rock stars I have come to know. Rock stars I have seen through their early stages that are now taking steps, playing sports, and standing in photos. It is that second wave that throws me the most, as my heart battles with feelings of joy and triumph and, well... I'll just say it... jealousy.

Perhaps the hardest part of all of this is that I can see the determination, the will in Brooklyn's eyes, and what I can't handle is that some day she may be disappointed, too.  Her spirit is such a wonderful mix of strength and sweetness, and more than anything, I don't want that to be taken away from her.


But it is that realization that pushes me to get past this. To let myself feel and express and not be ashamed so that when she comes to the age of understanding, I am over it and I can encourage her to embrace her life and keep kicking. God gave her that spirit, and I believe -- I have to believe -- He will not take that from her.

I also realize I have a role in that, too. I can't mope around and act like her life is something to be sad about because, well, it isn't. Her life is a beautiful, wonderful, glorious miracle that I wouldn't change for the world.

For.the.world.

And so just like in those early days, I am clinging to His promises, letting the tears fall, and digging deep to find the will to move forward. Yes, my image has been altered, heart adjustments are being made, and we will order that wheelchair. But Jeff and I have promised each other that no matter what, we will encourage her determination, to keep her kicking, even if it's not all the time. That no matter what her mode of transportation is, we will never let her give up. We will do our best to breathe as much life into that spirit as we can because that is about all we can do. The rest is up to Him.

I am broken, yes, but as the days pass and I find the strength to hand this over to Him, I can feel His peace and power in my weakness. And the more I lean on Him, the more I can feel the hope finding its way back into my heart, pushing out any preconceived images I have been holding on to. Because the only image that matters here is the one He created.

The love I have for Brooklyn outweighs any of this pain and that is how I know it is all going to be just fine. Just like He planned.






Thursday, May 10, 2012

Destination

We've all heard the phrase, "It's not about the destination, it's about the journey." In many ways, that's been an underlying theme of my blog for the last 2 years. And what I love the most about that statement is that our journeys are all so wildly different, yet at the same time, they are at the core, very much the same.

We all have challenges. We all have a goal -- a destination -- in mind. And while sometimes the path might not be the one we would have chosen or may even be full of some pot holes we'd rather not jump, the point is that we can push through it. If the desire is there -- if the will to reach that destination is strong enough -- we can get there, regardless of the challenges.

During this journey, there have been times when I've been sad about the things Brooklyn won't be able to do. Things that her sisters will be able to do -- maybe even do together -- while Brooklyn has to sit on the sidelines.

But, VERY much like her determined big sisters, Brooklyn has once again taught me that if there is a destination she wants to reach, she will reach it. In her way.

Kendall LOVES doing gymnastics. In fact, I think I see her upside down more than I see her right side up throughout the day. She is constantly doing cartwheels, handstands, and headstands, regardless of where she is or what she is (a-hem) wearing. (We have since decided that shorts must be worn under all skirts and dresses...)

Always trying to be part of the action, Brooklyn started asking me to flip her over. Of course, at first I was happy to do so, but after 923 assisted somersaults, I realized perhaps I should have thought that one through a little. She is 21 months old and doesn't quite comprehend what "one more time" truly means. So to her dismay, Mommy has to say "no" after about 2 or 3 flips.

But not to worry, Miss Brooklyn has figured out her own way to gymnastics -- without Mommy's help -- and is more than happy to perform on command. In fact, she now has added a pause between acrobats to wait for applause.

This video is a little old and was taken around Easter, but I still wanted to share it. Brooklyn's "gymnastics journey" may look different, but really, does it matter? The girl has reached her destination, and she is happy and proud. And so am I.

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*Please ignore my extremely annoying high-pitched "excited" voice. Precautions will be taken in future videos to prevent possible hearing loss.*

Saturday, May 05, 2012

Hello Again

By the looks of this blog, we never had an April. Whoops. How did that happen? Honestly, I never intended for a whole month to go by without posting, but I have to admit that my initial absence was intentional.

As much as I love this blog and it is my outlet, anytime I find myself tempted to do something for "blog material"  or, worse, putting way too much energy into checking back for comments, I pull back. I like sharing our story and putting it all down for prosperity, but I never want to fabricate anything. I enjoy blogging about something awesome we did, but I don't want to do something awesome just so I can blog about it. See the difference?

In other words, I try to keep myself in check.

And, really, sometimes I don't want to share everything. The last few months have been trying for me, and I like to gain a little perspective before I go spilling my guts. I want to be real, yes, but I believe some things are truly matters of the heart that need to be between you and God. That is, unless He leads you to share those feelings.

I've had a pretty important post traveling around my head for a while now, and I hope I have the courage to write it soon. I considered writing it today, but like someone who hasn't been to the gym for a while, I'm kinda just showing up today. No pressure to try and write a manifesto, just dipping my toe back into something I truly enjoy doing for me and for my family...when I have the time.

So, just like any good lazy blogger, I'm going to sum up the last month in photos. But only because I want to. Hopefully, you enjoy them too.


My favorite Easter photo that captures all of their personalities... my goofy Emma, my giggly Kendall, and my happy little Brookie.
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All of our Spring Break family fun jam-packed into one day: A family trip to the Museum of Science and Industry, followed by the Sox game.
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My usually neglected feet showing off a pair of FREE sandals (long story...) and Florida-ready mint green toes.
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My awesome, totally relaxing, and ridiculously affordable annual road trip to Panama City Beach, courtesy of my dear friend's generous in-laws. Five stressed-out mamas doing nothing but reading, sleeping and laughing like teenagers for five days straight... all the while, our hubbies willingly hold down the fort and take care of our kiddos. So, so blessed.
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And, finally, Soccer Mom season #2 is in full swing, and I have already learned the importance of blankets and snacks. Soccer Dad is still learning the importance of "playing for fun"...and maybe I am a little bit too. Maybe.

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Friday, March 30, 2012

When it rains...

You grab your fanciest umbrella,
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some fun rain boots,
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and you let it rain.
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Knowing all along,
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that you are covered.
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Making it work... (and linking up with Small Style)
Hoodie and leggings: Target, Emma hand-me-downs
Boots: Kidorable, gifted
Umbrella: Kidorable via Zulily

Sunday, March 25, 2012

Purpose

When the tears are falling and the aches are tearing,
Use me, Lord.

When the laughter is healing and the sun is warming,
Use me, Lord.

When the day is flying and the child is asking,
Use me, Lord.

When the friend is hurting and the feet need washing,
Use me, Lord.

When the world is searching and the answers are missing,
Use me, Lord.

When you are prompting and I am listening,
Use me, Lord.

Until your work is done,
Use me.

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"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

Thursday, March 15, 2012

No Words

I love to talk. To ask questions. To find good answers. To read and write it out until it makes sense.

I like to lose myself in the words because it is then that I often find myself.

But some days, I want -- no need -- to be quiet. Some days, I just want to watch them.

No words. Just love.

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And I usually find myself there too.

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Making it Work...
Shirt and vest: Baby Gap, niece hand-me-downs
Skirt: Old Navy, niece hand-me-down

Monday, March 12, 2012

Imagine

I hesitate to write this, and I'm not entirely sure why. It is real. It is honest. Things I promised this blog would be. But I'm still nervous. Maybe because Brooklyn might read this some day, and I don't want her to ever think I don't love her exactly the way she is. Maybe because I wonder what you'll think of me. Or maybe because I don't want others to feel weird -- or guilty -- around me because their children don't have physical challenges.

But, today, I am pushing all of that aside, and I am going to "just write" it for me. It needs to come out, and I need to make sense of it. So here goes...

For the first time the other day, I imagined what it would be like if Brooklyn didn't have Spina Bifida. I mean really imagined. Lately, I have been watching, noticing other little ones, and I started to wonder, what if...

I tried to envision her running along side her sisters, her cousins. Climbing onto furniture. Cruising along the edge of a coffee table. Getting up onto the fireplace.

I wondered what she'd be like. Would she be a monkey like Kendall -- climbing onto everything -- or a busy bee like Emma -- running around in circles (literally) until she fell down laughing.

What would it look like to see her pigtails bounce as she skipped? Would her personality be different? Her smile bigger? Her giggles louder?

Would she walk on her tip-toes? Would she spin and spin until she collapsed to the ground in exhaustion? Would she chase her sisters around the house, or would she prefer to be chased?

As the tears clouded my already cloudy vision, I tried my hardest to see it. And for a second, it was there. All of it.

I've never done that before. I did write this piece, but that was different. That was imagining her years from now (in Heaven) and it was from her perspective, not mine. I never actually tried to see my Brooklyn -- the one I see every day -- as anyone but who she is at this moment.

And now I know why.

It hurts. A LOT.

But more than anything, it is confusing. It makes me feel guilty, and it does not make me happy.

I have written in the past that I have felt a loss, but no regret, and I think that is very accurate. From the beginning, my heart accepted God's plan for Brooklyn's life. Even if I didn't always want it or agree with it, I accepted it and I trusted Him. And I am grateful for that because otherwise I would constantly feel what I felt the other day, and let me tell you, that is NOT a good feeling.

I'm not sure if there is a lesson here or not, but I have to remind myself that not everything has to make sense all of the time. Sometimes things just are what they are, and you feel what you feel. And that's okay.

But going through that -- feeling that -- confirmed that it is a total waste of time and emotional energy to picture what could be when the real Brooklyn is wonderful and beautiful and in front of me RIGHT NOW.

And it wasn't until I went "there" that I realized just how much I accepted Brooklyn for who she is. Up until this point, I never even thought about picturing her any other way. For some reason, my images have always involved crutches and braces, even as I felt her squirm in my womb.

So, now, as I write this, I am deciding that I am not going to feel guilty about going "there" because as I'm sure you would all would tell me, it was a natural, human thing to do. And second, and definitely more importantly, because it showed me that focusing on the here and now is so much more fulfilling than focusing on what could or should be. There are some things in life that you can change, but there are other things in life that require you to simply change your perspective.

I guess that is a lesson after all -- one I can apply to many other things in my life that have nothing to do with Spina Bifida.

And that really is one of the greatest blessings of this journey. How it is teaching me to live. To not imagine a life I want, but to dig down deep and create the life I want with the many blessings I have been given. To accept, to trust, to appreciate, and simply love. At the end of the day, that is really what this life is all about. We just junk it up with a lot of other things that really don't matter.

When I think about living life to the fullest, I often imagine myself running through a field of wild grasses on a sunny day without a care in the world. And I got to thinking...is it the feeling of running through the field that makes you feel alive, or is it the breeze running through your hair?

I didn't realize it until now, but for me, it is the breeze. I can't see it, but I can feel it. Whether my eyes are wide open or whether they are closed, I can just feel it. We can all feel it.

That, my friends, is my blessed assurance. I pray it is yours as well.

Wednesday, March 07, 2012

Pockets

Today, sandwiched in between therapies, preschool pick-up, and a few conference calls was a small pocket of time. A time that could have been used to tackle the mountains (yes, mountains) of laundry sitting on my bedroom floor or the extremely neglected toilets and floors, but instead I grabbed an adorable two-braided girl by the hand and we skipped outside.

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No phone, no nagging minutes, no plan. Just me and my middle enjoying some rare time alone in what ended up being the most gorgeous day we've had this year.

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She rode her bike. I took pictures. We had a picnic with veggie straws and giggles, and we played baseball until Brooklyn woke up and joined the party.


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The sun was bright enough for sunglasses, and fur-trimmed coats were shed and replaced with polka dot and plaid hoodies.


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We had stroller races until Emma got off the bus -- the only indication that our time was almost up. Therapy #2 at 4:15.

As Emma headed down the driveway and handed me her coat, she pulled out a bottle of pink Hello Kitty nail polish from her sweater pocket -- the nail polish she asked me (about 103 times) to "pleeeeeease put on" this morning.  But between outfit wars, half-made lunches, and eggs on the stove, there was no time for nail polish.

"Why did you bring that to school with you?" I asked her.

"Because I wanted to," she said with a huge grin on her face. "I carried it with me all day."

With that, she put it back in her pocket and suggested we play hide and seek until Miss Julie arrived. I smiled, soaking up her wisdom, and agreed to be the seeker.

~Linking up to Just Write