Monday, February 28, 2011


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.


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.

Take THAT Spina Bifida!

This is my friend Beth, an adult (about my age) who has Spina Bifida. She uses a wheelchair full time. She volunteers for CASA, where she is an "advocate for the safety and well-being of children who have been removed from their homes due to parental abuse and neglect." She is also awesome at the sport of rowing, has won silver and gold medals and is working toward the paraolympics. She is very involved in her local YMCA as she trains for rowing and is helping to raise money for a kids camp there by public speaking in the community.

If you're interested in watching an adult who has SB live a full and active life, take a look at this:

And here she is, ROCK CLIMBING! She can climb 8 feet now, and she averages an extra foot every time she tries.
Doesn't look like such a bad life, does it?

Saturday, February 26, 2011

I was having a particularly challenging day yesterday. I fretted most of the day and had some pesty house guesses arrive to just make my pitty party even more exciting. You may know these guys yourself....they are....what if's and coulda, woulda and shoulda! These guys know me all to well and it seems when I am having a difficult "Spina Bifida" kinda day....they pull out all the stops and try to beat me down until all the light that I have been walking in is almost extinguished.

Sometimes I am able to quickly send them on there way and other times I give into their reasoning, which most of the time ends up with me eating a bowl or two or three of ice cream or anything else that I can get my hands was Girl Scout Cookies! They showed up at the right moment yesterday...

Last night as I was out on my run for work, the word HOPE kept flooding my mind. I analyzed each letter and found it be a most amazing word. The reality of Spina Bifida is sometimes things are not so wonderful per say. This is what I discovered. I am not sure if I was just overly tired last night or maybe this might make sense to someone else. So....forgive me if I am way out there today.

Here is what I call the dark side of Spina Bifida....
(when things seem so hard and nothing appears to be going right)
-Ostrich Syndrome (hiding from what you know is happening because you don't think you can handle another diagnosis or appointment or bill or whatever it may be)
-Pacing (because you can't sleep)
-Enough (the point when you really believe that you can't do this!)

Now here is the flip side.....

My point is this.... HOPE is like our personal life-jacket. It keeps you from drowning in the what if's, and coulda, woulda and shoulda's that can weigh so heavily upon us. It is ever present and ready to wrap itself around us. There is safety inside that vest and it takes courage to walk in its light. Maybe instead of eating all that ice cream, I could have found a better way to deal with my moment.Madilyn is still progressing from her spinal surgery. We just passed the 5 week mark and are in full swing with all of her therapies! She is progressing so well and has learned to swim again!

Best Wishes to each of you this week wherever you journey may take you....
Walking in HOPE....
Jill aka...Madilyn's MOM

Monday, February 21, 2011

Trusting through the Grey

Well, the honeymoon is over. We are right smack dab in the thick of what is Spina Bifida. And, honestly, it is harder than I ever imagined.

I like to call it the land of "grey." Nothing is black and white in Spina Bifida world. There are no solid answers. There are no promises. But, of course, that means we have Hope.

I know this. I've known this since the day we found out about Brooklyn's condition. Her middle name is Hope, after all. But that was before I could see her little face. That was before I fell totally and completely in love with her. And that was before she was in front of me, crying, crying, crying and I had no answers, just possibilities...

a shunt malfunction?
the wrong pressure setting?
urological issues?
growth spurt?

I could go on and on and on. And I have. My head is spinning, my heart is aching, and I am physically exhausted. I feel weak. I hate that. I hate that there are no answers. I hate that the only way we may have an answer is waiting. And I really hate that I am using the word "hate." It is such an ugly word, but right now, it is accurate.

Tomorrow, we might get answers; we might not. I am hoping and praying with all that I am that we get some answers. I can't nurse one more minute. I need sleep. But WAY more than any of that, I want my happy baby back.

These are my feelings. As ugly as they are, they are accurate. I want to be strong. I want to be "inspiring." But the pressure needs to be heart needs to feel.

But this waiting, this "grey" I speak of, I know He will use them. THIS is the character building. THIS is what will strengthen me. THIS is what will give me the Hope, the endurance to do this every minute of Brooklyn's life.

THIS is what faith truly is. It is having the discipline to TRUST when it is the last thing you want to do.

So I cried out to Him. I told Him I trusted Him until I believed the words myself. Over and over and over.

I trust Him.

Do you?

"I waited patiently for the LORD to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the LORD."

Psalms 40:1-3 (NLT)

~Lisa (@ Heaven Sent)

Monday, February 14, 2011

Shaken but still united.

Those are the words that come to my mind when I think over the last week.

Ive watched us Mommies, Daddies, Aunts and Uncles be slightly shaken.

We've heard all kinds of things recently.
Fetal Surgery, What if, Could Have, Improvement, No shunt, Shunt, Walking, Not walking, percentages, and on and on the list goes.

For those who went through the surgery with their babes. An amazing victory. A punch to the air and a big whoop. maybe some feelings of defensiveness for choosing the surgery.

For those who entered the study but didnt get chosen. Maybe a feeling of defeat. Questions and whys. Maybe some punching of faces instead of air.

For those who were advised against the program completely or chose not to look into it. Confusion, fear and a slew of what Ifs

We could beat ourselves up, We could fight each other, or we could wallow in self-pity and guilt.

But naaaaa. We might be shaken up a bit. We might wonder some. We might have those moments.

But We are still UNITED!

and honestly, no matter what side of the fence you are on. Or maybe you just plain straddle it. Being united is what clearly matters most.

ps dont forget to send in your pictures for a header for us!!

Saturday, February 12, 2011

Madilyn's Recovery

My emotions still get the best of me when I talk about the experiences that we have had with Madilyn over the past three weeks. I wanted to share a few photos....they tell her story better than I can right now.Her sweet smile before surgery with they help of some loopy medicine! Going into surgery to release her tethered cord....(She has done this 3 times before!)

48 hours after surgery....

5 days post-op... things were pretty rough...PT got her up for the first time... difficult day...she lost her ability to walk....

A few days after we had been in the Rehab Unit!

It was a good day.... she was being discharged!

Madilyn graduated from the CIRU after 7 days. We were told to expect a 21 day stay. It was amazing to see her work so hard. She has regained the feeling on the bottom of her left foot and that has helped with her balance issues. She has begun to have "tingles" in her right leg. We are hopeful she will feel parts of it again. We are already working with PT and OT at the out-patient rehab center. We have our home assignments to work on when we are not there. Everyday she gets stronger and stronger. Her return to school this week was not successful. She had to go back to the doctor yesterday....I about fell over when they said STREP and a bladder infection!

We are so grateful for all the prayers that were offered in her behalf. We believe she is where she is today because of those prayers. We wish each of you a wonderful week full of HOPE!

Until next week,
Jill aka....Madilyn's Mom

Friday, February 11, 2011

A Brag Moment for the Thomas Family!

One of our very own families here on Spina Bifida Kids was featured in the New York Times this week in an article on the SB in-utero surgery! (which if you all haven't noticed by now, has been largely in the news all week!) (I hope they don't mind me passing this along!)

New York times interviewed Jared, Jessica, Chloe, and their toddler son, Tyson (L5-S2). I want to strongly encourage you to check out their interview! And if you get a chance, they have one AMAZINGLY detailed journey on Tyson's in-utero surgery, successful birth, and today's journey with him on their blogs. This family has done an incredible outreach to others having been diagnosed with SB babies as well.

You can read the interview here:

Their Blogs:

Congrats Thomas Family on a huge success, for both Tyson and for advocating for all SB families everywhere :)


Monday, February 7, 2011

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


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 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

Saturday, February 5, 2011

Give Love

(I'm posting this on every blog I have access to...because it's important...because I want to reach as many people as possible...and because I can. ;) So if this is your third time reading it -that just means you are one of my BEST FRIENDS! Thank you.)

Because it's February.
Because I just decorated my house in pink and red hearts.
Because Valentines are not just for couples...but friends, mommies, daddies, siblings, classmates and neighbors.
Because everybody needs love. And not the romantic comedy, butterflies in your stomach, plucking petals off daisies kind of love.

They need the "I'm yours forever" kind of love.
The "we can do this together" kind of love.
The "can't stop starring at you" kind of love.
The "I'm always there for you" kind of love.
The "I can't keep myself from smiling around you" kind of love.
The "I promise to make time to laugh with you" kind of love.
The "everything you say is so important to me" kind of love.
The " I couldn't be prouder of you in this moment" kind of love.
The love that lifts you up....
Squeezes you tight...
Makes even hard times feel alright..
The love that teaches you all that you need to know...
And gives you support you need to grow...
The undeniable you were made for me...
And together we make a family...
What's mine is yours...
I treasure each kiss...
And everyone deserves to feel like this...
Kind of Love.

Because real love is something that cannot be bought - only shared. We need it from the time we are born - and those of us who having loving families know that NOTHING could have replaced that. The love of family - the love I was given as a child - made me who I am today. It teaches us how to love the rest of our lives. It can never be truly expressed in the form of greeting cards, chocolates, flowers, or jewelry. Those sweet tokens and gestures give momentary happiness - it's the feeling love behind them that really means anything at all. So with that in mind, and in the spirit of this holiday of love - I would like to propose the perfect gift for your loved ones.
Give the gift of Love itself.
Give Love.
You can bring joy and love not only to those who hold your heart -
but to child who needs your help.
Give Love.
By helping one little boy come home to the family who is waiting to give him this kind of love. The kind of love every single one of these children pictured above are given every day.
The kind of love so many of us are blessed to have.
The kind of love he deserves.
Give Love.
Shea's story is a remarkable one - and it is only just beginning. He now has a family ready for him - and Shea is WAITING to come home. His family is actively completing the adoption process - eager to give Shea the love, support and care only a family can give. The only thing wecan do to help them bring Shea home as soon as possible is to GIVE.
Give what you have.
$5, $25, $50
It's not the size of the gift, but the size of the heart behind it.
It is so costly to adopt internationally - so much so that many people say "we can't afford that" or "it's just not possible for us". But this family has given everything they have not once, not twice, but 3 TIMES (read their blog - they are an amazing family)and is making that leap of faith to make Shea a part of their family - but they need help raising the last bits.
(And in adoption language, "bits" = $9,000!)
They need our HELP!

As a friend so honestly reminded me " Let's face it ... we all spend/waste $$$ on this every year. The chocolate is gone...the flowers die... and all you have is a distant memory of the token(s) you invested in."

How much more meaningful - how much more noble - how much more true to what love is all about - to give that money instead to this family - to this little boy -
to bring him home - to give him Love.
So help share the love...with Shea. :)

Isn't that the most adorable Valentine ever?!
It's message is simple - it's purpose sincere.
Make a donation (even just $5!) in the name of a friend or loved one - to Shea's Adoption Grant (through the chipin on the right hand margin of the Saving Shea blog) or visit his family's blog and donate through their chipin (it all goes to his account.) Then print out these adorable Shea Valentines and give them to your sweetie, your sister, your mother, your friend - and see their faces light up at the sweet face on the card.

I can't think of a sweeter, kinder,
more beautiful way to Give Love.
Can you?

(visit to read more about Shea's story as well as to view/print these Valentines.)

Thursday, February 3, 2011

Take THAT, Spina Bifida!

I can't even keep up with all these kiddos who are telling Spina Bifida to shove it this week! Here are just a few:

Lysette about Lyla:
"I kinda feel bad for saying this, but I sure didn't think Id be chasing my kid around and removing everything from her path!!! But I tell you what... put Lyla on a nice open floor and she's on the go! And terrorizing everything in her path! :) I couldnt be happier! Take that spina bifida!"

And Tawny about Joshua:
"At a week shy of 8 months old my son rolled over for the first time today.... all by himself! What a beautiful thing that we all take for granted...something so simple as witnessing a baby roll over. Take that Spina Bifida!"

Guess what--Gavin started walking this week!!!! Check out the video and Heather's inspiring blog post. (This may be a SB mom blog you aren't following yet!)
Ramblings of a Mother of 3

Guess who else is walking--Mia!!!!!! And she's talking too, which means she's simultaneously kicking Spina Bifida butt and apraxia butt! This kid is a super hero!
Video of Mia walkin and talkin

In case you missed it, our friends Nicole and Annabelle gave SB a double punch this week with this blog post. Baby girl is strutting in her walker, and Mama ain't playin around with SB ruling their life anymore! Pow!
You Won't Win!!!

And lastly, little Kingsley is proving to SB and everyone else that even surgery can't keep a little hero down. This kid is a rockstar.
Kingsley out of surgery

I'm liking this! It feels good to have all this butt kicking in one place, right? So here's the deal. I know there's no way I'm going to catch all these success stories--large and small--every week. If you have a "Take THAT, Spina Bifida" moment to share, send me a facebook message! (Not my friend? Add me! Colleen Payne--the one that has 80 mutual friends with you.) Also, I started out asking permission before posting these, and then I realized I would never get anything posted if I kept doing that. So I'm going to assume that if you are posting something on your blog or facebook or babycenter, it's because you want to share how awesome your kid is with the rest of the world, and you won't mind if I post it here. Right? If you do mind, let me know.

Here's to another week of beating the crap out of Spina Bifida! Let's do it!

Wednesday, February 2, 2011

Who wants to be a star

So, We've gained some publicity over here at Spina Bifida Kids. We've rocked some worlds with our awesome shirts. We've shed some tears with our posts. We've punched some air with our fists when we read about a child doing amazing. And of course we've REDEFINED!!

So now, who wants to be the star of this show???!!

What am I talking about?

I'm talking about the header picture.

Of course we all love the star of the show right now. Jet! He's totally hot : )

But I'm thinking lets have some fun. Lets do some rotation. Submit your picture for the Spina Bifida Kids header and it might just end up right there for everyone to see!! Id like to pick the top 3 pictures and have them rotate.

It can be whatever means something to you. Shoes, braces, a smile, standing, sitting, rolling, You choose and let me know why.

I'm pretty sure this smokin hot guy could give you a run for your money!! : )