hello

Hi everyone!
I do apologize again for being late on my post (Tuesday). This new mommy thing is crazy sometimes :) I really don't have a specific post to give, just some encouragement today. I want to let you all know that---
YOU ARE AMAZING
YOU ARE STRONG
YOU ARE A BLESSING
YOU ARE LOVED
Having a child with Spina Bifida makes you an elite member of something VERY special; so put on a smile today, and a pep in your step! GO GET EM GIRLS!!!

Leading the Way to the Future

(NOTE: Clicking on a link in this post will open a new window and will not take you away from the spinabifidakids.blogspot.com page.)

The Spina Bifida Association of America (www.sbaa.org) is preparing for the 37th annual conference. This year, the conference will be held in Cincinnati, Ohio from June 27 through June 30. From the SBA web site:

Please join the Spina Bifida Association (SBA) for the 37th National Conference to be held at the Hyatt Regency Cincinnati (Cincinnati, Ohio) from June 27 - June 30, 2010. Children and adults with Spina Bifida, their families, physicians, nurses, and other clinicians have the unique opportunity to gain information on the latest medical care and network on various issues which affect their lives and professions.

• Learn up-to-the-minute information about urology, orthopedics, neurology, neurosurgery treatment, and much more!
• Attend practical workshops and special programming that address your own interest areas. (schedule at a glance)
• Network with various interest groups - from others living with Spina Bifida to health professionals and product manufacturers.
• Find out how researchers are paving the way for more knowledge about Spina Bifida.
• Hear from leading Spina Bifida partners about the important role advocacy plays in our Community's success.

Register today and find out why the SBA National Conference has earned its place as the world's premier educational event for the Spina Bifida Community.


Many local Spina Bifida organizations offer scholarships to families so that they can attend the conference. If you are close and attending is a possibility, it would be great to see you there. I'm hoping to spread the word about SpinaBifidaKids.blogspot.com at the conference.

International

Just wanted everyone to know we just went


International!!!!


Got a note from a woman from the International Spina Bifida Association the other day. She did a little article on the blog and a button for the sidebar on the International Spina Bifida website. I thought this was super exciting news!!


Honestly, this is mainly thanks to all of you. The ones who read, comment and of course the ones who have linked their personal blogs to ours by adding the button on the side. What a wonderful thing you all have done!!! I have gotten so many thank you from you all, but honestly the thanks truly goes to you. Without having readers and people willing to take the time to link this wouldnt have happened.

If you are sitting there wondering why this is so exciting....Well, lets put it this way.

HOPE!!!

What a way to get HOPE out there.

So again, thank you..thank you...thank you. And for those of you who havent filled out a featured child questionare please feel free, and for those who havent added the button yet PLEASE do. These are just a few of the ways to continue with our message and help it spread.

definitions

Wikipedia ---A tape measure or measuring tape is a flexible form of ruler. It consists of a ribbon of cloth, plastic, fiber glass, or metal strip with linear-measurement markings. It is a common measuring tool. Its flexibility allows for a measure of great length to be easily carried in pocket or toolkit and permits one to measure around curves or corners.

Mom of a child with spina bifida--- A tape measure A instrument used to measure head circumference and monitor hydrocephalus. Something that makes me freeze and literally hold my breath. Something that can easily bring tears to my eyes.

5 month old with Spina Bifida--- A tape measure Something bright and interesting... yummy





"It is not a bad thing that children should occasionally, and politely, put parents in their place."-- colette.

News

Sometimes I read something that is just too good to keep to myself...
(NOTE: Clicking one of these links will open a new window and will not take you away from the spinabifidakids.blogspot.com page.)

From the Chicago Tribune this week: www.chicagotribune.com

And you may know Rachel from Signing Time, but this weekend, she pushed her daughter with Spina Bifida in the Salt Lake City half marathon: www.sltrib.com/sports/ci_14885089

You can read Rachel's blog about it at: www.rachelcoleman.com

In Jacksonville, Florida, $11,000 was raised by go-kart racers for Spina Bifida: jacksonville.com

And I totally ADORE Abigail Branson!


Do you have news to share? Have you read or seen any good news lately? Leave a comment or send me (ohiohennhouse@gmail.com) an email with your link and I'll add it to this list!

Take a blood pressure pill before you read this

Background Info for the story to help keep it short:

Went on a trip with my friend Andrea. We each have three kids. So that makes 6 kids to 2 adults. We were driving up through Texas and decided to make a fun stop in Dallas and spend the night and visit the Mall to let the kids play.


Okay, actual story:

This past Sunday Andrea and I loaded up our kids and left on a trip. We were pretty much a sideshow at every stop we made. 6 kids and one in a walker really makes quite an enjoyable show for on lookers. We all road in our first ever taxi ride to the Galleria Mall in Dallas Texas from the hotel we were staying in. (we heard they had an awesome play place...I was mistaken) Now if you havent been to the Galleria then you cant quite picture the ridiculous size of this mall. It's huge. So we load up the kids in stroller with Toby's walker hanging off the side and march ourselves to the 3rd floor play area. There were quite a few kids there (understatement) and we werent thrilled, but knew the kids were looking forward to this. I set Toby down in his walker and shockingly even with the noise he was good to go. This was a moment of triumph for us. All those kids and he wasnt scared or overwhelmed he just charged ahead. Andrea and I were blocking the exit (like any good parent would) and watched the babies climb around. We were commenting on how incredible Toby was doing. He had left his walker and was climbing on top of a big collection of plastic rocks (they were meant to be climbed on) I pushed his walker off a little but still right by the rocks and stayed close to Milo. I wanted Toby to have the security of it being near by. Within minutes Andrea walks over to me and says,...OKAY GET READY FOR THIS. "That man just took Toby's walker out of the play place." I was shocked. Another parent took it upon himself to pick up MY child's walker and remove it. Of course I did what any parent would do, I tossed my hips back and forth as I went over picked it back up and placed it right where it was. The sent a glare his direction. OKAY TAKE A DEEP BREATH.
Within minutes a security guard walks up to me. "Maam we are going to have to ask you to remove your child's walker." Are you kidding me??? Is this really happening in America?? In Dallas?? I argue, politely..no really. I didnt even yell. But he tells me I'm going to have to remove it. By this time a second security guard has now come up and tells me how he understand but i still have to remove it. By the time I am now tearing up, not crying, but for sure some tears. I am shocked, frustrated and feel totally overwhelmed. I remove his walker from the play area completely defeated. Feeling like I couldnt even defend my son's RIGHT to have his walker nearby him. I told them I wanted a number for a manager or something. That this was discrimination. Please tell me you agree?? The parents are sitting there, I mean close to 30 parents just sitting watching the whole thing. Watching me cry, watching me take the walker out and they just watch. I am humilated. Not one parent says anything to the guards. One dad walks up to me and lets me know how horrible it was, but still does nothing. We dont leave because Toby doesn't know what has happened and I dont want him to know. He stills climbing around happily. Minutes pass and finally the two security guards come back, walker in hand and set it down beside me and tell me it can NOW be in there but I have to stand guard it. I did as they asked, knowing that it still really wasnt made right. There was no apology, no, "we handle this wrong." All this drama because ONE Dad decided it was dangerous for my child's walker to be in the same place with his child!!! He lied and told the security guards that kids were falling and getting hurt on it. Not one child tripped or got hurt on it. One Dad and 2 security officers who obviously were not educated and had no understanding and/or compassion.
So the world's not perfect yet. People still dont understand, still arent fighting to protect our children's rights and things like this are still going on. Shocking isnt it?
Thanks for letting me share this with all of you

PS A friend reminded me to add this. My husband did make a phone call for me after the incident. The first manger or whoever he talked to was apologetic. The manager admited that they had survellience and NOT ONE CHILD was seen getting injured on the walker. My husband asked for one thing, for them to write an apology email to me. (yet to get one) After that phone call HE RECEIVED a phone call from someone from the mall, (not sure who he was, manger, or something) who had heard his first phone call and chewed my husband out. Was rude, unkind and tried to make my husband feel like an idiot for calling and complaining. The original guy then called back and reapologized!! Tell me this isnt just crazy!!

I needed to stop

It can be very very hard to have so many questions, so many concerns, and so few permanent answers. So... sometimes you need to just STOP.

 We did just that today, and I cannot even begin to express what a relief it was to stop, and smell the flowers.

"O LORD, how manifold are thy works! in wisdom hast thou made them all: the earth is full of thy riches." Psalm 104:24

Dancing

(Note: This was originally posted at the HennHouse in March...)

Dads and daughters...

That is such a loaded phrase. For some, with nostalgia, emotion, happiness. For others, regret, anger, loss. But there is no mistaking it, dads and daughters have special relationships. Different than moms and daughters. Or dads and sons. Those are great relationships, too. But dads and daughters? Special. Very special.

We had been home from the hospital for two weeks. She was recovering nicely, but I felt like she needed to be pushed. Prodded. Encouraged. To get back into some of the things that she seemed reluctant to do. She lost a lot of weight and strength while she was hospitalized. I wanted her to get some back. So, I pushed her to keep trying. And honestly, she was doing great. But the one obstacle was the braces. The waistband for the twister cables sits right on two of her incision sites. She had them on at the hospital before the final surgery and it hurt. A lot. She was more than reluctant to try again.

Two weeks after her third surgery, I implored her to put them on. Just to try. She was adamant that it wasn't going to happen. She can be a very persuasive child. So, she does what she does when she doesn't want to do what I'm suggesting. She negotiates. Girl can hold her own. Let me give you an example:

Me: "Esther-Faith, would you like to have broccoli or green beans for dinner?"

Esther-Faith: "I think I'm going to have itty-bitty marshmallows."

Me: "Esther-Faith, would you like to have broccoli or green beans for dinner?"

Esther-Faith: "I think I'm going to have applesauce."

Me: "Esther-Faith, would you like to have broccoli or green beans for dinner?"

Esther-Faith: "I think I'm going to have tomato soup."

Ad infinitum.

As it turns out, she lost NONE of her negotiation skills while hospitalized.

But neither did her Mama.

So, on February 19, we compromised. After the back and forth of the "would you like to's" and the "I think I'm going to's," we came to the compromise that she would put her braces on when daddy got home from work. Only if she could get into the learning tower.

I texted him that I thought I was losing the battle. That I wasn't sure she would ever want to put them on again. I told him of our compromise. He loved it. Daddy as the reward.

Daddy got home from work, changed his clothes, and HE started to try to negotiate. Knowing that it was already determined that she WOULD put them on, he switched tactics and asked if she wanted to sit or stand while wearing the braces. She ignored the question instead saying, "I think I'll use my wheelchair." And round and round it went until we convinced her to try.

Once in her braces, it was if she had lost no time. She wandered the house, chasing the cat, emptying shelves, reaching for things on the counter. Climbing, falling, standing, walking.

It was a beautiful sight. There were many tears at the HennHouse. I took her picture and texted it to Kate and my mom and a couple of friends and anyone who I thought would appreciate the accomplishment as much as I did.

Then she did that thing she does with Tim. I would call it batting her eyelashes, but she doesn't really do that. It is more of a WAY she asks him something. And he really can't say no. EVER. If she wanted to paint the ceiling pink and she asked him the right way, he would find a way to convince me to paint the ceiling pink.

But that day, she walked over to him in her braces and simply asked him to dance. I'm not sure a whole second of time passed before they were out on the "dance floor" grooving to Mahalia Jackson. She would instruct him to tip from side to side, and he would do it. She would instruct him to jump, and he would do it. She would instruct him to swing her around, and he would do it. Song after song played, and they danced the night away.

At one point, she set one of her little feet onto Tim's toes, and she stepped her other foot onto his other toes. My memory flashed decades back to when I used to dance with my dad the same way. I looked at Tim's face. And he was happy. Truly happy. He laughed. She giggled. They danced.

It was one of those moments that I'm sure will be seared into my memory for a very long time.

Tim is a smart person. It wasn't lost on him what was happening. She was holding onto him, not the wall or her walker or a chair. Him. So, he started to let her hands go. One at a time. They would scream "TA-DA!" and then he would grab her hand again. She was so into the music and the dancing that eventually, when he let go of both of her hands, she didn't realize it right away. She just danced. It was truly amazing. He stepped back and let her dance. She lost her balance a little bit and reached for him--almost taking a step toward him in the process.

Watching your kids take their first steps is one of those iconic moments in parenting. The toddling and falling. But we haven't had that moment with any of our kids. It was emotional the first time she walked with her walker. And the first time she walked holding onto us. But holding onto nothing? It hasn't happened yet. That night, though, I could finally see what Kate saw in her dream. That she WILL do it someday. She will take those unassisted steps. And I will look on through the tears that represent all that she has been through. And all the anticipation in the years of waiting.

Featured Child: Ian

There are some scary moments:

I live in a small town were there is not acurate specicalists and hospitals to tend to the needs of spina bifida, so i had to deliver out of town. i delivered Ian in one hospital but then he was taken to another for his surgeries.Ian was in the nicu longer then he needed to be due to a student nurce putting the wrong bandage on my son's back. that was a scary moment because while he was in one hospital I was in another with my kidneys failing, so I couldnt do anything to defend him.

Finding out the news:
I found out about Ian's spina bifida through an ultrasound, they presented the news to me as if it was the end of the world; sugesting I should abort him for his benefit.

Some people just know what to say:
The most encouraging words said to me was that doctors are wrong about knowing the future; it is up to the individual child to know were they were going to go, not the doctors.

Some people dont:

People ask why he isnt walking yet, and when I tell them he has spina bifida; they say is that curable, "is he going to have that his whole life?"

I'm Proud of him:

Ian is crawling as speedy as a racecar, pulling up on everything in sight; and cruising around along the couches like a pro, no doubt he will be walking by his next birthday.

Just a Kid:

Ian loves peanut butter and jelly sandwiches and bananas
Ian is happiest playing with paper and boxes, he would rather be outside with his oulder brother then inside with me;he loves peek a boo. Ian is the most joyful and energetic 17 month old boy one would ever meet.
Ian has the cutest smile, his 4 teethed smile just steals your heart, he has the most contagious laugh


I love:


Personally I love how God has given me Ian with all his special issues, I love the joy he has and that he brings to our family. some of my family thought he was a burrden, but now they all know it is totally the highlight of our lives.

The Will of God

The will of God will never take you,
Where the grace of God cannot keep you,
Where the arms of God cannot support you,
Where the riches of God cannot supply your needs,
Where the power of God cannot endow you.

The will of God will never take you,
Where the Spirit of God cannot work through you,
Where the wisdom of God cannot teach you,
Where the army of God cannot protect you,
Where the hands of God cannot mold you.

The will of God will never take you,
Where the love of God cannot enfold you,
Where the mercies of God cannot sustain you,
Where the peace of God cannot calm your fears,
Where the authority of God cannot overrule for you.

The will of God will never take you,
Where the comfort of God cannot dry your tears,
Where the Word of God cannot feed you,
Where the miracles of God cannot be done for you,
Where the omnipresence of God cannot find you.

"Everything happens for a purpose.
We may not see the wisdom of it all now
but trust and believe in the Lord
that everything is for the best."

Holidays

Over the last couple of years, we've found that while we still "do" the holidays, they look a little different for us. Where we hide the eggs is much more accessible. Our schedule is much more rigid as we keep to cathing and bowel management programs. Our meals are different as we adjust to allergies.

But, as much as things are different, we find that lots of things remain the same. New Easter dresses complete with matching hats and purses. Baskets filled with goodies. Time spent with family. And playing to the point of exhaustion.

What do you do different? The same? How have you adjusted your holidays to make them most accessible and loads of fun?