My favorite part of a "holiday" that I don't like

The Karate Kid, Rocky, a butterfly, a snow princess,
and a moody teenager doing his homework on the stoop.

Something melodramatic by Trans-Siberian Orchestra filtered through the speakers as Esther-Faith crawled to the playroom. She hadn't finished her white hot chocolate. She didn't even eat any of the candy she collected from the neighbors. Tim watched as she gingerly crawled to the middle of the floor, put her feet underneath of her body, and slowly stood up. It took many tries. But without the assistance of any of her equipment, she stood up.

And then, she just stood there, watching her reflection in the sliding glass door. Her cousins and brothers ran around her playing, laughing, and enjoying the chaos of the night. But she just stood. Occasionally she lost her balance. She would teeter forward or back. Sometimes falling all the way to the ground with a thud. But she always got herself back up to standing.

And then, ever so slowly, she moved her arms to first position. Holding them still in front of her body, she waited for her balance to catch up. Then, gracefully, she stretched her arms out to second position. Tim stood next to me in the dining area. Two of the three boys had heaped more sweet and sour noodles into their bowls. Auri was taking more sips of her hot chocolate.

Watching her own movement in the reflection of the glass, she slowly and gracefully set her arms into third position. Then fourth. And finally, fifth. Just before losing her balance and crashing to the floor again.

Unaware that we were watching, in an awkward gentle motion, she put her feet back under her body. Willing her orthotics to do what she wanted them to do. She slowly and comically got to standing again.

Already brimming with emotion of tough choices and hard decisions, I grabbed my sister's arm and started to cry. Tim grabbed the camera and moved into the play room determined to capture her remarkable tenacity on film.

She moved slowly but fluidly through the arm positions of the five basic ballet positions again and again. Tim knelt in front of her encouraging her when she fell or helping her focus when her balance threatened to interrupt her practice.

Esther-Faith will start real ballet in January. Actually, all three will start ballet in January. I've been searching for a few months for an dance studio that will teach my daughter ballet without putting her into a "pity" class or just appeasing my request in the name of compliance. I want her to learn how to dance. For real. Because SHE wants to learn how to dance. For real.

So, I contacted a few dance studios. Dozens maybe. I heard "no" a lot. I heard "we've got a wheelchair class" a lot. I heard "have you tried such-and-such" a lot. And I got tired of explaining that I wanted her in a class with other children learning ballet. That I wanted her to work. That SHE wanted to work. That she loves to dance, and I want to give her the opportunity to learn to dance.

Eventually, I found a well-established studio with an adaptive specialist who would be available to help Esther-Faith learn to the best of her ability. They never offered a different class. They didn't tell me "no." And most importantly, they understood that Esther-Faith wants to be a ballerina, but that it might just look a little different.

They are excited to have her. She is excited to go.

When we talked about Esther-Faith taking "real" ballet classes, Isaac decided that he would also like to take ballet in addition to more tap. And then Isaiah, the teenager, said he wanted to take ballet, too. So in January, all three of my children will begin ballet. At three different stages in their lives, and for three different reasons.

But really, Esther-Faith's education has already commenced. She has started memorizing the vocabulary. Pas de bourrée. Pirouette. Pas de chat. She often convinces her dad to lift her into the air. She gets books about ballet from the library.

And she practices.

It is more difficult for her. More strenuous. More work. But I think, also more beautiful. Because I know what it takes for her to even stand at all, let alone stand in position. I know what it takes for her to move her body a certain way, let alone do it gracefully. I know what work it is for her to just try.

Eventually, I moved to the play room, too. And so did Auri. The girls moved through the positions together. Auri grabbing Esther-Faith's hand at one point to keep her from falling. Convincing Daddy/Uncle Tim to set down the camera and lift them both into the air.

As they danced, I moved slightly away. The music was loud. They were moving their bodies. Dancing. Playing. Enjoying the evening and each other. And she did it again. After months of not, she took three tiny steps into my arms.

Those positions. Those smiles. Those steps. They make my heart so happy. So full of joy. So full of hope. She may never play Clara or Cinderella or Odette. But she will dance.

And it will be amazing.

Celebrate

I was quickly scrolling through the "United by Spina Bifida" and the "Take That Spina Bifida" groups on facebook before I had to turn my attention to homework and nighttime routines. I get maybe five to 10 minutes a day to catch up with people who I consider friends and co-travelers on this journey.

Tonight, I saw post after post after post of babies, children, and adults doing things that they were cautioned (and some told outright) wouldn't happen. Adults blowing off steam doing something they love. Children standing by pumpkins. Babies beating the odds.

And I was immediately moved to tears.

It doesn't take much. But what struck me was that I was looking at photos of children and parents doing normal things, but when I really looked, I realized that these normal, everyday experiences were anything but. Because watching your child walk into a field to pick a pumpkin when you thought he wouldn't walk is worth celebrating. Because watching your friend who has been through dozens of surgeries give birth to a baby is worth celebrating. Because realizing that a baby that was close to death two weeks ago is thriving today is WORTH CELEBRATING!!

I know it is Spina Bifida Awareness Month and that there is a lot of educating going on, but I think there is even more celebrating. And I love it.

Long (and promising) day at clinic

Our check-in time for clinic was 8 a.m.

Mimi came over to see the boys off to school so we could head to the hospital early.

Earlier in the week, our appointments were confirmed. We would see the social worker, urology nurse, neurology nurse, occupational therapy, physiatrist, and some others. We also found out that her renal ultrasound (we have one almost every clinic appointment) was scheduled for 3 p.m. From the outset, it looked like it was going to be a long day.

Once we got to the hospital, got checked in, and started the process of answering what feels like 1000 questions about the last six months of Esther-Faith's life, we got word that there was a cancellation in ultrasound and Esther-Faith was going to have her renal ultrasound at 9 a.m. instead of 3 p.m.

Sigh of relief.

BIG.

So, 30 minutes from her (new) appointment, we pushed fluids. She needed a full bladder to get good scans.

Some folks who we were not scheduled to see stopped in for social visits or just to catch up. One of those people was Brett--the wheelchair tech. Not only is he AWESOME at his job, he is also just a great guy. We shared books we've been reading. Our goals for Esther-Faith. She shared how much faster she wants to go. So, Brett went to his car and got an ultra-light, multi-purpose (can be used for every day or racing) PINK wheelchair for Esther-Faith to try. It did not have a seatbelt or tippers.

She loved it. L.O.V.E.D it.

Here she shows off her wheelie skills for Brett.

While Brett retrieved the fancy, new wheelchair, Esther-Faith and I headed to ultrasound.

The ultrasound tech was SUPER, VERYMUCH, ULTRA thorough. Don't get me wrong, I appreciate thorough. But seriously, they're not allowed to tell us anything, Tim was waiting back in the clinic room, and the minutes were dragging into an hour. Picture after picture after picture. Not by me, after the first couple of minutes, I forgot I had the camera. I just stared at the black and white screen-- not completely ignorant of what I was looking at, but still more confused than sure. I asked annoying questions. (I know, because she kind of rolled her eyes at me.) After a (really) long time, she gave me a catheter to empty Esther-Faith's bladder so she could get post-void pictures. Some more time (and lots more pictures) later, we packed up and headed back to Tim.

You'll never guess who was waiting when we got back... NICK!

Nick (who makes her orthotics) is Esther-Faith's favorite person at clinic. She thinks he makes a great dance partner. And in the morning when we were getting ready to go, she said she wanted to see Nick "first and last." In other words, she wasn't willing to fit anyone else into her busy clinic schedule.

After Nick, we met with the OT, the developmental pediatrician, the neuro-psych doctor, the pediatric resident, the urology nurse, the physiatrist (and her crew), and the neurology nurse. She hid from more than a few of the doctors.

I think one of the reasons Esther-Faith has never met a stranger (and why we're having such a difficult time teaching her stranger-danger) is because of appointments like this. Where there are lots of the same doctors she sees from clinic appointment to clinic appointment, but even MORE that she'll see once in her life, but that we ask her to allow to touch her feet and legs, check her shunt, ask her personal questions, and force her to be polite and accommodating.

I get it, they're learning to be the doctors of tomorrow, but for today, it seems so contradictory to tell her to be wary of strangers--oh but wait, not these ones. Or those ones over there. So, I'm left with questions about how to teach her stranger-danger while learning to trust the right people.

Some good news... and some great news.

The good news first: Esther-Faith will be participating in a clinical trial that will--over the course of a year--test for markers in urine that indicate a serious infection. She will also be testing a new, single-use (but more expensive) hydrophilic catheter for the duration of the year to determine if the incidence of UTIs goes down. Her catheters will be supplied (yay) and she'll have her urine tested periodically. We're all about finding new products that will help other SB patients!

The GREAT news: After talking to the neurology nurse about her symptoms, undergoing some simple tests, and understanding better what we're dealing with, the neurology nurse said that Esther-Faith is NOT experiencing increased tethering of her spinal cord! All SB patients have some tethering (it's the nature of the beast), and some will require de-tethering surgery and some will not. Currently, we are in the WILL NOT category! (Can I get a whoop-whoop?!)

Things can change fast or slow, and we're still learning, but even though it was one of the longest clinic appointments yet, we walked away with eight prescriptions, an appointment for followup testing with neuro-psych, an appointment for wheelchair clinic, and a script for an eight-week OT session, but feeling positive and reassured! (If not a little apprehensive about a racing wheelchair!)

After a quick lunch out, we took Esther-Faith to her favorite destination (Build-a-Bear) for a new friend: SNOOPY.

Sick?

The constant "snap, snap" of Isaiah taking apart the k'nex Ferris wheel in the other room was soothing as I rocked back and forth with my head in my hands. I had just poured through Proverbs 3 seeking comfort and promise from the scriptures I believe, while simultaneously struggling with worry about my daughter upstairs.

She was sick. For the second time this week. Mysterious, sudden, and scary sick. She wanted the comfort of her favorite movie and her favorite brother. I obliged with both. Isaac wouldn't have it any other way. So, he sat vigil next to her bed while she watched "Cars."

Every time she flinched, grabbed her stomach, grimaced in pain, whimpered in fear, or needed anything, he was at her beck and call. He fetched her anything she needed or wanted. He jumped at each sound. And he did it all voluntarily.

I sent Tim scarce updates via text. I knew he was busy working, and I didn't want him to worry. But an hour before his shift ended, he took leave and made his way home. She had a rough night--up every couple of hours. I had a rough night, too. Barely sleeping. Up every few minutes to check on her. Worrying. At 1:45 a.m. she panicked because I had sent Isaac to his own bed. Isaac, the BEST big brother on the planet, came back to her bedroom and camped out on her floor.

By the morning, she seemed to be back to her old self. Just like what happened on Tuesday night/Wednesday morning. She asked for cereal. And she wanted to play. She didn't seem sick at all.

I've been doing this long enough to know that sometimes what seems like a simple illness is more than it seems. Sometimes, what presents as a virus is a virus. And sometimes, what presents as a virus is an intestinal blockage or shunt malfunction.

And that is what we suspect this time. The sudden sickness. The additional symptoms. The unpredictably of it all.

We'll ask her how she is feeling, and she will answer, "Great!" Even as she clutches her body in obvious pain.

So, every time she is sick, my mind goes to the dark places that borrow trouble from the unknown. I worry about what is and what could be. About getting appointments and tests scheduled. Taking time off work. Getting results. Doing it all alone.

Even as we approach this next chapter in her care, I am aware that we are walking this road together. Last night, as he picked up toys and nervously cleaned, Isaiah kept saying, "Even if she is sick, she will be okay."

His love for her palpable. His worry inescapable. His commitment to his sister and his family unflappable. His trust was in the one who gave the promise I poured through in Proverbs. The boys and I stayed up late watching a movie based on a book they had both read. We checked on Esther-Faith every few minutes. And we prayed a lot.

Because even if she is "just sick" or more than "just sick," we know that in the end, it will all be ok.

Let love and faithfulness never leave you;

bind them around your neck,

write them on the tablet of your heart.

Trust in the LORD with all your heart

and lean not on your own understanding;

in all your ways submit to him,

and he will make your paths straight.

Proverbs 3:3, 5-6

Painting her new pencil box for kindergarten on Wednesday.

Sometimes...

...things are best said by someone else.

Check out what Roman's mommy (Erica) posted.

It's called "Postcards from Holland."

And don't forget your tissues.

http://fourpotters.blogspot.com/2011/07/postcards-from-holland.html?spref=fb

Insights and MIA

So, sorry I've been MIA for the last two weeks. I've been throwing myself a pity party that so many of my SB mama friends were enjoying the national conference while I dealt with stuff here at home... But you know, yesterday, I saw some WONDERFUL photos on facebook and some blogs that lifted my spirits. Pictures of you. Eating together. Laughing together. Fellowshiping. And having a great time.

I loved them. Even though I wasn't there, I felt a smile spread across my face at seeing you all have such a great time. And even more when I read about your encounters. I've already informed the husband that I WILL be going next year.

*smile*

-----

Oh, and did you get your "Insights into Spina Bifida" magazine today? Yeah, me neither. Actually, I've been going back and forth with the SBA for a while about my subscription as we haven't received ANY issues since we subscribed more than a year ago.

BUT... I did hear from Colleen on my facebook wall today that my kids are on the cover.

Which I'm totally excited about. Now, if I could just get my hands on a copy!!

(I have read the article written by Carole Barnhart, and I'm including the text below. You might recognize the piece by my son, it first appeared right here on SpinaBifidaKids!)


----- ----- ----- ----- ----- ----- -----


In February 2005, Tim and Karin Henn of Columbus, Ohio, welcomed two new sons into their family. Isaiah was eight and Isaac was four. They came to the “Henn House” from the foster care system, with distant memories of a baby sister they hadn't seen since Isaac was 17 months old.

“Tim and I never intended to have birth children,” says Karin. “It was our desire to build a family through adoption of special needs sibling groups. But as soon as the boys arrived, they began praying for a new baby sister. By Mother's Day, I was shocked to discover that I was pregnant!” Esther-Faith was born nine months later with Spina Bifida, beginning what was to become remarkable relationships with her two brothers.

A Spectrum of Emotion
“The siblings of children with Spina Bifida often experience a wide range of deeply complex emotions,” observes Melissa Bellin, PhD, MSW, LCSW, Assistant Professor at the University of Maryland School of Social Work in Baltimore, Md. “It is typical for feelings to fluctuate from occasional jealousy or embarrassment, through protective watchfulness to profound compassion and love.”

“I have definitely seen the protectiveness in both my boys,” Karin notes. “Isaiah once drew himself up and stared down some kids who were making rude comments. Isaac, too, has stepped up in her defense.” Perhaps because of the difference in their ages, Karin has not seen evidence of jealousy or embarrassment. The boys do become frustrated with Esther-Faith's medical needs—as much from concern for her as for themselves. The nighttime routine gets tedious at times, but Karin and Tim make sure they spend one-on-one time with each son, hoping to avoid their feeling overlooked or unimportant.

“Especially when there are medical crises or hospitalizations, siblings of children with Spina Bifida are at risk of feeling undervalued,” says Dr. Bellin. “For that reason, I recommend that parents encourage positive attachments with caring adults outside the immediate family so there is a safety net to support the siblings' needs during especially stressful periods.” For Isaac, daily contact with his grandparents have woven the safety net that has allowed him to stay on an even keel during Esther-Faith's hospitalizations. Not so for Isaiah.

A Healing Connection
Because of the boys' early life experiences, Isaiah and Isaac both have what is known as 'reactive attachment disorder. “It is difficult for them to form trusting attachments,” Karin explains. “It is so severe with Isaiah, that Tim and I had prepared ourselves to never have deep attachment with him.”

Enter Esther-Faith. Karin describes her and Isaac as “the best of friends.” Often, Karin will find the two of them curled up together, Isaac reading to Esther-Faith, or teaching her to read. For Isaiah, his relationship with Esther-Faith is perhaps the only positive attachment he experiences. “The connection I see between Isaiah and Esther-Faith has given Tim and me hope that some day we may eventually connect with him too,” says Karin.

“We thought that because of Isaac's connection with her, he would become undone when Esther-Faith was in the hospital for three weeks last year,” remembers Karin. “We were surprised to see the opposite happen.” When he sensed the stress level rising, Isaac stepped up to the occasion, doing extra chores without being asked. His grades even improved in school. “He seemed to understand the influence that his actions had on the rest of the family,” Karin says.

Isaiah responded in the opposite way. As the hospitalization dragged on, he got into increasingly more trouble at home and at school. “We tried to give him as much time with his sister as possible,” Karin recalls, “but it seemed that he really couldn't handle having her gone. It truly illustrated for us how critical that one connection is for Isaiah.”

Hidden Rewards
Dr. Bellin's research has discovered that as siblings of children with Spina Bifida grow older, most come to accept and appreciate the unanticipated rewards that come with their situation. “Many of them grow toward an appreciation for their own health, and an increased respect for diversity,” she notes.

Karin knows that her boys are aware of how difficult life can be for Esther-Faith, but she has not seen them translate that awareness to themselves. “Isaiah has expressed his sadness at the medical procedures and the limitations Esther-Faith has to endure,” she explains. “But I haven't seen him apply that experience to himself. When he runs a charity race, he says he is running for Esther-Faith. Isaac doesn't seem to see Esther-Faith through the lens of her disability at all. When they play together, he just makes it work for her.”

Respect for diversity is a given for members of a trans-racial family such as the Henns'. “Difference is the only thing they know,” observes Karin. Even with their own personal struggles, Karin believes that none of her children would claim to have “special needs.” “We've been through difficult times with the boys,” she says. “But we've learned to separate their behavior from their person. When they get into trouble, we remind them that it isn't their fault, it is their problem. And problems have solutions we can work out together.”

If Dr. Bellin were to communicate one message to the families and health care providers of children with Spina Bifida, it would be the need to remember that the impact of a disability reverberates throughout the family. The Henn family is testament that those reverberations are often as positive as they are negative.


[pullout]
Dr. Bellin remarked on the complexity of emotion experienced by the siblings of children with Spina Bifida. When Isaiah was 13, he captured those conflicting emotions in a family blog.

Hello! My name is Isaiah. I am 13 years old. I was nine years old when I found out that my brand new baby sister had Spina Bifida. I was nine years old when my life changed forever, and it has made me the brother to a sister who I never knew would have to go through so much just to take a step.


When I found out that my sister, Esther-Faith, had Spina Bifida, I did not know what to do. All I knew is that I had a sister. But when I walked into that room, I heard the news, and I realized just then that I would have to work harder.


I was trying to be helpful by staying out of the way. I didn't want to get in the way of the doctors or the chaos. We already had enough of that! I tried to do little chores for my parents as well.


Spina Bifida wasn't exactly anything I wanted for my little sister. I hate to see her watch other kids do things that she can't do. It hurts me so much and I can't do anything about it. I was startled to hear that my sister had Spina Bifida. It spooked me out. But when I met that little, tiny baby, I realized it didn't matter if she had Spina Bifida or not, she is my sister. Now, I feel the same thing. Four years and six months later, she is still my little sister.


I honestly did not do any research on Spina Bifida. I did not really know how to use a computer and it did not come to my mind. I was too busy rushing around staying out of the way. But thinking about it now, I probably should have.


It is really hard to see my sister go through surgeries and to have to watch it happen. It breaks my heart. This January, when my sister was in the hospital, I didn't know what to do with myself. Should I feel sad? Surprised? Worried? Scared? All of these? I didn't know. But now I know. Even when she has surgeries or hospitalizations, or has Spina Bifida, I can believe one thing... actually two things. These two things I hold on to. Wherever I am, I take them with me.


The first is that I love my sister.


The second is that I won't ever let her go.

Decisions, decisions

Summer has officially started, and we're officially in "countdown mode" with regard to Esther-Faith's kindergarten. Oh, we're not counting down the days until she goes to school, we're counting down the days until we have to make a final decision.

To make a long story short: Private school close to me with no services (PT, OT, Speech, adapted recreation, etc...) that is all day, every day and close enough that I could get to her every three hours to assist with cathing.

OR

Public school with services that only meets Monday, Wednesday, and every other Friday to which we would have to transport her but where she would have a nurse to help with cathing and then we have to find childcare for the other days of the week.

It is a HARD decision. And we can't seem to make up our minds. We've got our pros and cons for each. We've made our lists of "what-ifs." We've agonized over the whats and wherefores. And STILL, we can't decide.

I know, it's kindergarten. Except for our kids, it's more than just classes. The decisions go beyond what they'll learn to how they will learn it. Where will they have the least restrictive environment? Where will there be someone who knows the signs of shunt failure?

How do we decide?

If you've walked in these shoes, ANY advice you can give would be appreciated!

Anxiety and cheer

Worry weighs a person down;

an encouraging word cheers a person up.

Proverbs 12:25

Photo notes:
Sometimes, difficult moments turn into days.
And days into weeks.
And we start to feel the weight of the life we chose.
And then...
We find ourselves in the company of those who love us.
Very, very much.
And they understand.
Even when they don't.
And they listen. And reaffirm. And love.
Mostly, love.

That is where we found ourselves this weekend.
Difficult, heartbreaking decisions looming.
Disappointment weighing.
And the arms of our family encircling.

And it was amazing.

Catcher's Mitt 101

First, make sure you have the right attitude.

Make sure you know how to use the glove.

Forget the glove, I got this.

Make sure you have a good partner.

Hands out, ready to catch.

Wait a minute. I don't need to see the ball coming at my face.

I can totally catch it anyway.

Egg Hunt

On Saturday, Esther-Faith went to a special egg hunt put on by a local community service organization. There were beeping eggs for the eyesight impaired. There were eggs on benches for the children who couldn't reach the floor. And there were eggs EVERYWHERE for the kids to pick up. It was a decidedly slower egg hunt than others we've been to over the years, but Isaac connected with one of Esther-Faith's favorite preschool friends and helped him pick up eggs. And Isaiah did his best to convince Esther-Faith to pick up eggs.

Although, she was only interested in the pink ones.

Rolling

"Look mom, I can do a wheelie!"

We were in the men's department at Sears. Trying desperately to find some blue jeans and other clothing to fit the rapidly growing 14-year-old boy. We were having marginal luck. Isaac and Esther-Faith were bored. Really, really bored.

So, she learned to do a wheelie.

My heart sank to my stomach--or maybe it lurched into my throat. Either way, I instinctively reached for her chair to keep her from tipping. She wheeled away from me and tipped back again. Looking over her shoulder, laughing, her red curls tousled in the breeze. Her tippers caught her each time, and kept her from tipping all the way back.

She did it over and over and over again. To the delight of her brothers, her father, and a whole audience of shoppers and onlookers.

Tim loved it. Isaiah loved it. Isaac loved it.

I loved that she was learning something new--not so much that it was tricks and tips in her wheelchair.

That is how she rolls, though.

That is how she rolls.

Incentive

It's amazing what a little incentive can do...

I have book called "365 smart after-school activities" that we try to use a couple of times a week for ideas and activities. Today, the activity we selected was aerobic dancing. The note on the page reads: Aerobic activity significantly increases the oxygen supply to the heart, lungs, and all other body parts.

As it turns out, increased oxygen supply is what we needed.

Well, that, and the promise of a puppy.

We put on some music. The kids danced while I cooked dinner. I joined in occasionally. We skipped the slow songs. Isaiah and Esther-Faith were grooving. He was doing what he could to keep her off his toes. She was doing what she could to stomp on his toes. At one point he had to run out of the room, and he left her standing in the middle of the room.

We do this--leave her standing. Especially when there is music on. She loves to dance. She can stand for a while in one spot if we help her set her feet. He was gone a little longer than she liked. She kept dancing. I knelt by the piano. Isaiah came back into the room and stood by me as she took tiny, tiny steps. An inch or less at a time. Kind of dragging her left foot. She covered in a couple of minutes what I do in one step. But those tiny steps. Those inches. Those victories.

No walker.

No crunches.

No anything.

Tiny, tiny steps in my direction. Until she reached me and fell into my arms.

I sobbed. Happy, wrenching sobs. Isaiah's eyes weren't dry. He ran upstairs to get Tim as she wiped the tears from my face and asked, "Why are you crying, Mama?" She brushed my hair back from my face and caught my tears on her small finger. "Because I'm so happy, Esther-Faith!" I answered. "Do you know what you just did?!"

"I walked without my crunches, Mama," she answered nonchalantly.

Tim and Isaiah came back into the room. I reset her where she started. She stood there, wiggled her booty a little, and took tiny, tiny steps again. Right to me.

I have dreamed of this day for years.

Years.

After many tears. Lots of jubilation. Burning the barley risotto. Forgetting napkins on the table. And a whole lot more celebration. We sat down to dinner.

After dinner, she did it again. She walked two more times without her crunches. This time, we had the camera out. And each time she reached me, she reminded Tim that he promised her a puppy once she walked without her crunches.

And he did. About three weeks ago when she walked from the kitchen to the table a few times with one crutch to help Isaiah set the table, Tim told her that if she learned to walk without crutches, he would get her a puppy.

She loves puppies.

We texted Kate. And Mimi. And about half-a-dozen others. Then, she called Kate--completely glossing over the walking part going straight to the puppy part. Later she talked to Mimi. Same story. A little bit about walking. A whole lot about a white puppy with black spots named "Pony."

After talking to Kate, Tim slipped out and picked up an ice cream cake that said, "Baby Steps! Congratulations, Esther-Faith!" We had ice cream cake.

And despite our best efforts to sleep, Tim and I sit here in awe of our little girl. What she did today was not supposed to happen. But we can't shake the feeling that she isn't done. That she will keep doing all the things that she wasn't supposed to do.

A little bit at a time.

Tiny, tiny steps.

Sometimes, inches at a time.

And sometimes, it doesn't hurt to have an incentive.

Walker-Free Wednesday

It started with "Walker-Free Wednesday." Then, "Crunch-Only Thursday." And, "Where's My Walker Friday."

Eventually, she had transitioned to using only her crutches. Sure, she walks slow. She needs to be reminded to line her feet up. She falls more. And she's not as confident. But she's getting there. I don't even take the walker into preschool or daycare anymore. I leave it in the truck in case the teachers want it, but she goes with just her forearm crutches these days.

It's a big deal.

Until it isn't.

Today, as I walked into the daycare classroom just before lunch to help her with her catheter, I noticed that she was a little weepy. The teacher explained that she had a rough morning. She seemed tired and unwilling to share. Which was drama. And then, coming back from the muscle room, she fell. She was turning in her crutches and she fell.

Yes, she was physically hurt.

But when I asked her where it hurt the most, she pointed to her chest. That spot where we put our hands when we pledge allegiance. The spot where she places her hand when she gasps at a particularly sparkly something-or-other.

Over her heart.

I felt the lump in my throat. Because I knew what was coming next.

"So, your feelings were hurt?"

"Yes," she replied. "My friends laughed at me."

I didn't say anything. I couldn't think of anything to say. As she whimpered at the memory of it, I fought the tears of the future of it. We went about the business of cathing.

"Esther-Faith," I started. "How do you feel when your friends laugh at you when you're being silly?"

"I feel silly," she replied.

"Do you think your friends thought you were being silly?"

"Maybe," she answered. "But I was hurt. And the laughing hurt my heart more."

We finished. Washed our hands. Had a nice long hug. And went back into the classroom. We weren't there a full minute before two more "friends" started badgering her about wearing a pull-up.

"Why do you still wear a pull-up, Esther-Faith," one of them questioned.

"Yeah. I don't have to wear a pull-up anymore," the other echoed.

She looked at me. Her eyes begging me to take her out of the classroom. I knelt down in front of her. She leaned her head on my shoulder, and I whispered. "What do you want to tell your friends?" She shrugged. I held her delicate face in my hands and forced her to make eye contact. "Esther-Faith," I said. "You can tell your friends that you will wear a pull-up until your body is ready to not need it anymore." She stared into my eyes. "And that's ok, sweet girl." She wrapped her arms around my neck, buried her face in my hair, and slowly sighed.

It does not get easier.

For all the things she does that make me proud, I am sad that I can't protect her from the things that hurt. Hurting and healing make us all stronger. But these hurts... these pains... the aches in my soul for the things that I would change for my daughter if I could...

She is AMAZING.

She wasn't "supposed" to walk at all. And she's on the brink of walking with just one crutch.

She is AMAZING.

She was "supposed" to be "significantly developmentally delayed." But she did almost a dozen pages of self-assigned homework this evening. And she's on the brink of reading.

She is AMAZING.

She wasn't "supposed" to be here at all. But she brings out the best in all of us. Her brothers. Her dad. Me. She is our glue.

She is amazing.

On "Walker-Free Wednesday" and ALL the other days.

She is amazing.

For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because 

I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My frame was not hidden from you

when I was made in the secret place,

when I was woven together in the depths of the earth.

Your eyes saw my unformed body;

all the days ordained for me were written in your book

before one of them came to be.

Psalm 139:12-16

Dinner

1 large butternut squash, cubed
2 medium onions, cubed
6 garlic cloves, smashed
2 tbsp vegetable oil
Unlimited CUTE

We made low-calorie butternut squash soup for dinner in an effort to help Daddy as he battles back from five broken bones in his foot and almost three months of recovery.

In order to "help," Esther-Faith had to get her braces on and get into the learning tower by herself.

I will admit, I was reduced to tears as I watched her don her braces, push the learning tower to the island, and climb into it.

All by herself.

I know that by now, nothing she does should surprise me, but I'm amazed by her every day.

Prepping the veggies for roasting.

She misses her real Nana something fierce.
So, she insisted that the Nana that
never leaves her side help with the
soup preparations.

Cake-tastrophe

It had all the makings of a busy weekend. Lots of appointments, plans, and things to do. Including two birthday parties for the new five year old in the house.

We left the boys' therapy appointments and made our first stop at the party store. Parking in one of the 15-minute spots, we swiftly made our way through the store in search of a game that roughly 12 children of varying ages and ability levels could play. We had no luck. So we headed to the store to pick up the first of two birthday cakes. 

Before you judge, let me explain. Yes, I almost ALWAYS make the birthday cakes. And they almost always taste better than anything store-bought, but I BAKE. I haven't done an elaborate decorating job in years. My sister--who is fantastically creative and gifted with frosting--decorates. We're a team--a GOOD team. I bake. She decorates. BUT, Kristen was out of town this weekend. So, knowing I needed a couple of elaborately decorated tinkerbell cakes, and knowing my decorator was out of town, I turned to the professionals. It was actually Tim's decision. And he even called the bakery where my sister used to be a decorator. 

That said, I saw the cake. It looked nice. I paid for the cake. The price was kind of low. I called Tim on the way to pick up the second cake. He sent me back to the first place. They made the wrong size. So they make a second cake--on the house. 

At the second store (an ice cream store), we had place a special order. Because Esther-Faith cannot have chocolate, Tim ordered a cake with all vanilla in one half and chocolate and vanilla in the other half. And he ordered it to also be elaborately decorated with Tinkerbell. I walked in. She showed me the cake. Esther-Faith's name was spelled wrong. I asked for it to be fixed. I was treated poorly by the barely-older-than-my-son employees. 

Me: "Is there any way you can fix her name."

Employee: "Ummmm. Well, I don't know."

Me: "It's kind of important that her name be spelled right on her birthday cake."

Employee: "Well, it's close."

Me: "Right. But I did not order and pay for a cake that had my daughter's name almost right."

Employee: "Well, ummmm, I'll see what I can do."

Me: "Her name is spelled, "E-S-T-H-E-R-hyphen-F-A-I-T-H. Do you need me to write it down for you."

Employee: "No. It's right here on the slip."

(And she showed me the slip. And there was her name. Spelled the right way.)

Me: (a little dumbfounded) "Okay. Thanks for fixing it."

Isaiah called the series of events a "cake-tastrophe."

After that cake was fixed, we headed home. Once home, we ate lunch, and planned out the rest of the day. Where we would go. What we still needed to buy. What chores needed to be completed before company showed up. Etc... 

Then I started prepping the food. Lasagna for 30. Salad. Ice cream. We did chores and rearranged rooms. Eventually, we headed out. We had four stops to make. We had a plan, and even with five of us, it only took about an hour to get everything done, and then we headed back home. 

Sunday dawned. I made cinnamon rolls for breakfast. We planned to go to church, but time got away from us and we settled into chores and finishing preparations for the parties. There were two. One for Esther-Faith's friends from preschool and daycare at 2 p.m. And one for our friends and other grown-ups who care deeply about our daughter at 5 p.m. 

Around 1 p.m., Esther-Faith got sick. Not just sick, but sick like she did a month ago. Sick like she did a year ago. And we started calling everyone who had sent an RSVP to cancel the party. We were all upset. Esther-Faith was crushed. She was exhausted from being sick, but still wanted a party. By 2:30 or so, she seemed bounce back to her usual self. Bounding around the house. Eager to get her party on. Tim and I sent some tentative messages. To my mom. And Kate. And some close friends. That if they were feeling brave, we would still love to see them.

You know, there are times that I am just astounded by the support we have. People who show up and love us no matter how hard life gets. No matter how messy or challenging or tiring or scary or exhausting. They're here. Or wherever we are. To make us laugh. To help ease our nerves. 

Today, Esther-Faith played with all of the "prizes" that we bought to give her friends who won the party games. We did cut into the ice cream cake. But there are still two white cakes with white frosting and elaborate Tinkerbell decorations. Uncut. Untouched. In the garage (which is below freezing). We've got loads of salad left. And thank goodness the 14-year-old eats enough for an army, because we'll probably only have leftover lasagna for a couple of days instead of weeks. 

We're still on high alert. She threw a temper fit to end all temper fits today. Her appetite is still a little off. And she's not entirely acting like herself. But we had an MRI and a shunt series a month ago. I'm almost sure her shunt is ok. The rest of it? I'm not so sure. We've consulted Dr. Google about complications of  Chiari Malformation and allergies and other worst-case scenarios. We've started a bladder wash. And we take her temperature just about every hour. We ask questions about her tummy and her head. She gets irritated by all of the concern. 

But, we just don't know. She's not typically a sick child. For all of the complications of Spina Bifida, she has been a remarkably healthy child over the years. We'll watch. And wait. And trust our instincts. If action needs to be taken. We'll do whatever it takes.

So, Esther-Faith turning five years old wasn't the spectacular celebration we had envisioned. Cake issues. Cancelled parties. Illness. But, Esther-Faith still turned five. She is still our light and joy. She is still Isaac's best friend. And the center of Isaiah's whole world--his hope. Just as I didn't plan on her, no matter how bad my plans go for her, she is still perfect.

All this also comes from the Lord Almighty,

whose plan is wonderful,

whose wisdom is magnificent.

Isaiah 28:29

Waiting excitedly for Kate to come in the house.

Opening presents and playing with Mimi.

Karaoke with Jim.

Tinkerbell ice cream cake.
With her name spelled the right way.