Tuesday, June 29, 2010

Families and the SBAA Conference

Kari requested that we ask a family member about his/her experience with our child's Spina Bifida. My 13-year-old son really wants to share how he felt about learning about his sister, how he feels during her hospitalizations, and especially how he feels spending his summer vacation at a conference dedicated to her Spina Bifida.

However, as with most 13-year-old boys, he's kind of busy. I know he has started composing something, but if I know my son, he's going to make it as perfect as possible before he gives it to me. I'll post his thoughts as soon as he makes them available....

In the meantime, I've spent the last couple of days at the national conference. It has been amazing. I've learned a lot. And I've got LOTS of questions for Esther-Faith's doctors. Here are some of the things I've learned so far...

  1. Every child is different. Every family is different. What works for one family may or may not work for another family. But we all have a combined experience: we have a child (or children) or a family member or a friend whose life has been touched by Spina Bifida.
  2. See the list down the side? That list represents families and children. Real families. Unique children. Meeting some of those moms and dads and kids was the absolute highlight of my conference experience. Putting actual faces with names. Seeing them smile. Or nod. Or understand in a way that only they can understand. Carson’s mom and dad. Greyson’s mom and dad. Mattie's mom. Special people. The. Very. Best.
  3. Because each family is unique and each child is unique, there is not a “one size fits all” treatment for anyone. Not for the bowel. Not for the bladder. Not for hydrocephalus or shunts or IEPs or orthotics or any of it. What’s true for one L4/L5 child may be different for an L5/S2 child. Or it might be very similar. And an L2/L3 might present like an S1 child. Every child is different, but we can all benefit from sharing our stories and experiences with each other.
  4. You, the parents, are the ONLY true experts about your child. YOU know if your son or daughter has an attention deficit or if they are curious about everything. You know if your child is going to (or has) respond(ed) to a balloon cleansing enema or if you can buy over-the-counter pedialax and it will work fine. You know if your child has multiple recurring UTIs or if it is the same one over and over again. YOU know if your child will benefit from a play group or from a formal preschool program. YOU are the expert. YOU know if there are changes. YOU spend the most time with your child. YOU know what your family values and what you’re willing to sacrifice for your family as a team. Trust your gut.
  5. Spina Bifida can be an overwhelming disability at times, but there is a HUGE network of families and blogs and web sites and friends who are already walking the same road. Some families are farther down the road. Some children are grown and can provide a retrospective view of growing up with Spina Bifida. Some are coming behind you and can benefit from knowing what you’ve already learned. But, there is a lot to know. A lot to learn. A lot to remember. No one has all the answers. Not even the doctors. It’s important to share our stories and respect that even though our children have similar diagnoses, we all have something to bring to the table.

Are/were you at the conference? What did you learn? Who did you meet? Did you find anything overwhelming? Reassuring? Surprising?

Kari has created this great forum for us to share our stories and lessons. Whether you're a family member, a person living with Spina Bifida, or a parent at any stage of the journey, you can email her at kari.leann@hotmail.com if you’ve got something to share.

Sunday, June 27, 2010

Friends and Family

I was sitting around thinking about this blog. As I do on occassion. Trying to figure out what it's missing.

And it hit me.

It's missing our friends, our family. I know for me I would NOT have survived this journey without the Grace of God and of couse the friends and family that supported my family.

So the next week is dedicated to friends and family. The ones that carry us through the hard times and the incredibly wonderful times. You know the ones I'm talking about. The friends who rejoice with you when your child takes that first step or sits up on his own. The friend who cries with you before a surgery or new diagnosis.

We are better and stronger people because of these friends and family in our lives.

If you have a friend or family member that would be interested in submitting a personal story of being on the outside looking in at SB, feel free to email me.

And then go hug them, or write them a note. Maybe its someone you havent been in touch with in years, or maybe someone who you talk to everyday. Make sure they know how much you appreciate them and all they do.

Saturday, June 26, 2010

Questions, questions and more questions!

Over the past two weeks I have bombarded with "QUESTIONS"! The funny thing is....it has been from family or friends or those who are interested in Madilyn's life. They have all been from Madilyn, my sweet 6 year old who has Spina Bifida for those of you who may not be familiar with her.

My husband and I were discussing our July calendar two weeks ago. Madilyn has lots of appointments before she starts back to school August 2nd. Before I could finish marking all the dates, the questions began.

"Mom, why do I have to have surgery again?", "Mom, why do I have to go to the doctor so many times?", "Mom, why do I have to put the "cath" in the hole in my belly button every night and why can't we skip a day?"!

Then we moved onto statements....."Mom, if I have to have surgery again and it is school I am not doing it!" "Mom, I want to be at school for picture day this year and I am not going to the doctor and missing it again!"

I really didn't know what to say or do. I just listened at first. Then it hit me.....

I started from the beginning and retold Madilyn about when she was born. I explained that she has a very special body that requires lots of special doctors to care for her. I reminded her that each doctor takes care of a part of her care when we need them. I also told her that right now we are not sure what our next surgery will be or when or if she will need one. I have repeated this several times during these past two weeks.

Madilyn know she has Spina Bifida. She can tell you who takes care of each part of her body. She can tell you all about the "zippers" a.k.a scars on her body and what they were for. She can tell you about flushing her bowels nightly and "cathing".

During this experience with Madilyn, I realized that she just needed some reassurance from me. A reminder that no matter what we have come up, their are those who will care for her and things will be ok. We can overcome the obstacles that are placed before us.

I hope that I have calmed her fears for now....next time I will be more prepared. Maybe we need to have this conversation over a bowl of ice cream! For now we will continue enjoying the summer sun and pool....I hope each of you are doing the same!

Monday, June 21, 2010


(Note: the following is from the Spina Bifida Association web site... Click here to go to the SBAA page (will open a new window).)

A campaign to raise awareness and much needed funding for Spina Bifida research, care, education and prevention.
In addition, you could win cash prizes totaling up to $1,000 by becoming a Team Captain

Want to Get Involved?

If you are on Facebook, MySpace, or Twitter, sign up to become friends with SBA. (Facebook and MySpace search word: Spina Bifida Association) (Twitter search word: spinabifidaassn). By supporting4b4the4th, you will recieve updates about Spina Bifida, and SBA's various programs. Make your donation of $4, $14, $40, $400, or more before the 4th of July (Get it? Four before the 4th!). Then ask 4, 14, 40 or 400 friends to do the same.

What Will Your $4 Provide?

  • If you get 4 people to each donate $4, you will provide enough folic acid for one year to reduce the risk of one woman having a child born with Spina Bifida.
  • If you get 14 people to each donate $4, at least 14 people affected by Spina Bifida will receive vital information and referrals through SBA’s National Resource Center.
  • If you get 40 people to each donate $4, a child with Spina Bifida can spend one day at KIDS!Camp…a magical place that allows kids with Spina Bifida to just be kids.
  • If you get 400 people to each donate $4, we can continue vital research for the 166,000 Americans living with Spina Bifida.

Not on a Social Networking Site?

You can still participate in 4b4the4th – write an email to send to your address book letting friends and family know about the campaign and the reasons you support SBA.
As the summer temperatures rise, so will 4b4the4th weekly tracking thermometer so make sure you watch it climb at www.spinabifidaassociation.org/4b4the4th.
Don’t forget to encourage everyone to send a notice to 4 friends and ask them to send it to 4, 14, 40 or 400 friends. Contribute $4, $14, $40, $400 or more by the 4th of July.
This campaign is not only viral... it’s VITAL

Friday, June 18, 2010

Extrodinary things

I know alot of you are and have been involved in fund raising for Spina Bifida. Trying to spread awareness, trying to share your story. I know if you are like me at all you can get discouraged and feel like you arent getting anywhere. Sometimes its ways that we never expect and things that we never plan on that actually makes waves and encourages people. I'm sure the little girl that was posted on here a few months ago never thought that swimmming would encourage This mommy's heart all the way in Texas. Or a boy doing skateboard tricks on his wheelchair would open my eyes to fun that Toby could have. So sometimes its just living our lives that is encouraging, that makes the difference. Sometimes its the things we deem ordinary that are truly extrodianry.

I say all that to share with you about a boy who is starting his acting career. A boy with Spina Bifida. Click here for his story. Again just some encouragement of the things are children can do. Limitations are talked about all the time, but wow there is so much more out there. So much they CAN do!

So keep going. Keep living. and keep doing extrodinary things!!

Wednesday, June 16, 2010

Sorry I missed yesterday's post... I need some tips and tricks in relations to remembering the days of the week. :) The busy ness seems to meld them together.

I wanted to put together a post where we share some ideas of what has and maybe hasn't worked in the different ways that we may have to do things with our kiddos. I also want to help those mommies who may be expecting, and give you some ideas in preparation. I have a few, but I would love to get some comments ( I love comments) and some other ideas to add.


*Diapering- When we first brought Carson home we had to diaper him on his tummy because of his scar--- Well I still do. For us it is easier with the casts/braces and because of the sensitivity of his back.

Vaseline works better than any diaper cream I have tried.

*Bath-time- Because Carson goes potty constantly I now put a large paper towel behind his bottom when he is lying in his mesh tub--- This catches the dirty :) and keeps the water clean.

*Pacifier--- Try either warming it in hot water or placing it in the freezer. I do this when Carson is upset and not wanting to take the paci.

Cut two sides off of the Soothies-- The big circle tends to smash their noses and make it heavier. Without the sides it is more desirable.

* Swing/ bouncer- Buy a open kind-- hard to explain this so best to maybe look it up ( Fisher price- precious planet) If you have the clubbed feet casting/bracing they do not fit in any other kind.

Gotta go--- He is awake from his nap. :) I will run another post soon with some more tips and tricks. Please leave comments with your own. Thank you!

Sunday, June 13, 2010


If your family is anything like ours, we don't really need a reason to have a celebration... we celebrate EVERYTHING we can! Recently we celebrated Esther-Faith's "graduation" from preschool. She has a winter birthday, so, we'll celebrate again next year. But like I said, we celebrate EVERYTHING... even preschool graduations.

When her class made it's way to the gym for graduation, 
she waited for all of the kids to clear the doorway 
before she came through. 
Because you know, 
it isn't an entrance unless it is GRAND.

She sat with us, and waited every-so-patiently for her name to be called.

Then it was diploma time!

Saturday, June 12, 2010

A Mommy Adventure.....

I had the opportunity to take a "Mommy Adventure" and did not get to post my regular scheduled blog last week. I just arrived home today and even though I am so exhausted I wanted to share what I learned.

My adventure was huge for both myself and for Madilyn. Since Madilyn's birth I have only been away from her for one night except for the time she spent in the NICU after she was born. I just could never leave her. She was always with me. Maybe I secretly struggled with leaving her care to someone else...even my husband, who is a great Dad. I realize that this may seem silly to some but I guess I needed Madilyn more than she needed me in a way.

On Tuesday, I headed off to camp with my oldest daughter. A week in the woods with a bunch of crazy girls. Madilyn and my husband dropped us off on Tuesday. We said our goodbyes and....I cried. But, Madilyn, gave me a huge and kiss and smiled as she and her daddy hopped back in the car and headed home.

The short story is this.... She survived and I survived. Daddy survived. He flushed her MACE and sterilized her "caths". He did all the hard stuff the can happen in a day. He loved just being Daddy and taking care of Madilyn and she loved being Daddy's girl.

As I was laying on my cot last night I realized that it is important to fill my own cup. I don't have to go on big adventures every week but there needs to be some time to just take a breath. I had been running on fumes for the last year. Spinal surgery, bowel surgery, foot problems, cath problems, multiple stays in the hospital, doctors appointments and so on. I never complain and I hope that you understand that I am not complaining at all. I do these things because I love my sweet Madilyn.

Each of us need to fill our cup. Replenish our soul so we can handle the hard things that come from caring for our children. It is not a selfish thing to take care of yourself. It is the most important thing.

I am grateful for our experience this week. I am grateful that Madilyn was able to do so well. I was a little jealous of her and her dad when they picked me up. I got a big and kiss and brought home my renewed strength.

Tuesday, June 8, 2010

Tuesday's Tidbit

Attitude is Everything!

There once was a woman who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head.

"Well," she said, "I think I'll braid my hair today. So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head.

"H-M-M", she said, "I think I'll part my hair down the middle today." So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.

"Well," she said, "Today I'm going to wear my hair in a pony tail." So she did and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head.

"YEAH!" she exclaimed, "I don't have to fix my hair today!"

Attitude is everything.

And I truly believe that we have the very best right in front of us.

Sunday, June 6, 2010

Overheard at the HennHouse

I don't remember how it came up... But she was sitting on the table, I was sitting in a chair in front of her, and her plate of broccoli was sitting beside her on the table. She was eating the flowers off the broccoli and leaving the stalks. That's just how she eats it. She reached up and touched her neck...

Esther-Faith: "This is my shunt."

Me: "You can feel it?"

Esther-Faith: "Yeah. It goes down to my belly."

Me: "Where does it start?"

Esther-Faith: (tapping the exact location of her shunt with her pointer finger) "In my brain."

Me: "Why do you have a shunt?"

Esther-Faith: "It helps my brain work right."

Me: "But why?"

Esther-Faith: "Because I have hydrocephalus."

Me: "Oh. Do you know what that is?"

Esther-Faith: "It is why I have a shunt."

Me: "Do you know what caused the hydrocephalus?"

Esther-Faith: (shaking her head "no" as she sucked the juice out of the top of another piece of broccoli)

Me: "You were born with Spina Bifida."

Esther-Faith: "No I wasn't. Spina Bifida is a castle."

Me: "It is?"

Esther-Faith: "No. It's a tall tower at the castle. Guarded by a dragon. I live in the room at the top of the tall tower."

Me: "In the Spina Bifida room?"

Esther-Faith: "Yes. And Daddy lives there, too. And Isaac. And the dragon. And a baby dragon."

Me: "Oh. What is the baby dragon's name?"

Esther-Faith: "Girl-Jackson. And Isaac is Prince Charming. And Daddy is there to rescue me."

Me: "Where?"

Esther-Faith: "In the highest room in the tallest tower."


She's only four. I'm amazed at how much she knows about her own medical care at such a young age. So, I'm really ok with Spina Bifida being the highest room in the tallest tower for now.

Thursday, June 3, 2010

So I know some of you are not HERE yet in the stage of your journey that you are in, but I figure if you arent here yet, You will be.

Let's talk Chores!!

When I was pregnant with Toby I had an incredibly insightful nurse tell me something. Here is the Kari trying to remember version..

"Dont do it for him. When gracie is making her bed, he should be making his. When gracie is trying to dress herself then he should be learning how. Don't you clean up his toys for him. Don't let him off easy. Its the worst possible thing you can do for him."

Every time I see him struggle with his walker, holding a toy under his chin and dropping it 15xs, I want to run over grab it from him and put it and the other 10 toys on the shelf for him. Every time he insisted that he couldnt unbuckle his seatbelt I wanted to jump over him and push the little red button for him. Every time he got frustrated with his shirt and tried to put his head in the arm hole I wanted to grab it from him, throw it on and be done with it.

But I didnt.

And that my friend is my personal triumph!!

We have just recently started with chores in our family. (Of course after reading a great parenting book, "How to make your children mind without losing yours" By Dr Keven Leman.) I was really torn on Toby having a job and what kind of job he could have. I wanted him to be successful but I didnt want to sell him short. ie "Hooray!! You picked up one piece of paper and threw it away!!" So Toby's job is loading the dishwasher after dinner. It takes forever and I have to help him a little, but we throw all the rinsed dishes in a big bowl, open the dishwasher and let him go at it. You know the funny thing is?? He wanted to do another chore after he was done!! I didnt tell him he was good or anything like that. I just told him, "Thank you for helping me, You made it better for mommy by helping clean the kitchen." He totally felt like he was contributing to the family. (which is the whole point)

Anway, this post is to encourage you all to find a chore that your child can do either now or in the future. Because it really has helped. Its great to see him "help" with something instead of always being helped.
Its encouraging all the way around. So I hope this post encourages you. As that nurse told me almost 5 years ago. "Don't let him off easy." They really can do so much!!

So, for you guys with older kids....What chores do you have your child doing? Id love more ideas.

Tuesday, June 1, 2010

..A few years ago, at the Seattle Special Olympics, nine contestants assembled at the starting line for the 100-yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win. All, that is, except one little boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and looked back. Then they all turned around and went back......every one of them.

One girl with Down's Syndrome bent down and kissed him and said, "This will make it better." Then all nine linked arms and walked together to the finish line. Everyone in the stadium stood, and the cheering went on for several minutes.

People who were there are still telling the story.
Why? Because deep down we know this one thing:

What matters in this life is more than winning for ourselves.
What matters in this life is helping others win, even if it means slowing down and changing our course.