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

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.

Taking the scenic route

You may know Cassie. You may be a regular follower of her blog. You may know her because for Spina Bifida Awareness month, she featured our kids. 

She is an amazing person. I admire her for many reasons. We have a lot in common. We would be great "in real life" friends, if geography weren't so important. Her son, Caleb, is just months older than my Esther-Faith. And I think if they ever meet, Cassie and I may be in-laws some day. 

She wrote the following on her blog "Beyond Measure" today.

As she says in her intro, it is long. But it is WORTH IT. 

With her permission, I republish it here.

-----

I am warning all of you ahead of time that this is long.  I'm asking you to avoid just "skimming" and glancing at the pictures.  Take a few minutes to read.  I think this will mean something to many of you.

I follow a lot of blogs, blogs done by other SB moms (and one dad) from all over the country...and a couple folks in Canada.  A shout out to you gals in Canada!  I love reading about all of these other kids that are living life with Spina Bifida.  I love reading about their many victories.  I pray for them when they are facing surgeries.  I care about all of these kids and their entire families.  Recently I have noticed that many of the moms out there are struggling.  It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most.  It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk.  You are frustrated.  Beat down.  Exhausted.  Sad.

You feel like you are giving everything you have to help your child reach these milestones, but it's not working.  Or maybe you are beating yourself up because you don't think you are doing enough.  It's your fault.

I remember those days so well.  I cry sometimes when I read your blogs and I hear the pain in your words.  That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born.  And I can vividly remember how different he was, even as an infant.  Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left.  He had to work so hard to keep his head straight.

I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't.  Something so simple.  My son couldn't do it.  I remember leaving that same play date crying.  And honestly I eventually stopped going to play dates altogether.  I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority.

That was the goal we would work on.

As an infant, Caleb did not move his legs at all.  And I mean no movement.  They just flopped out to the side like a frog.

I saw how other babies would constantly kick their legs and could even stand up a little when held.  Not Caleb.  No movement, no feeling, nothing.  Just sweet little legs that flopped out to the sides.

That became my priority.  I just wanted him to try and use his legs.  That was the new goal.

Next was head control.  I called Caleb "bobble head" because the boy could not hold up his head.  It was just too heavy.

He required so much support.  I just wanted him to be able to hold his head up.  

That became my priority.  

My goal for him.

He was probably 7 months old before he could hold his head steady.

We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him. 

His PT had to make him a special seat to go in his high chair so that he would have more support when eating.

It felt like we were constantly having to do things, adapt things, to help Caleb.  Things that every other baby could do with such ease, was such a chore for my son.  Everything was a reminder that he was different.

The next priority was rolling over.  I worked and worked with him.  Desperate for him to just roll over.  Begging him too.  Bribing him with toys just out of reach so that he would roll over to get them.  Nothing.  I was convinced that he would never roll over.  While other babies his age were sitting up, crawling, and even standing...my baby couldn't even roll over.  Caleb was 10 months old when he rolled over for the first time.  It was to get a teddy bear that was out of reach.  I cried.  Rolling became his means of getting around for a long time.  He would just roll across the living room to get to what he wanted.  He found a way.

And then came the milestone that I thought would absolutely break me. Sitting.  Caleb could not do it.  I did everything the PT told me to do, I worked with him daily.  I prayed and prayed.  I asked family to pray.  I was desperate for him to sit up.  I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own.  Caleb was about 15 months old before he could sit up well on his own.

With every milestone reached, there was another one that needed to be worked on.  For every mountain he climbed, there was another one waiting.

Each goal became my priority.

Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on.  I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with.  I would highlight the things I worked on for that day.  And I would beat myself up endlessly on the days that I didn't get to everything.  I felt like a failure when I didn't work with him enough.  I carried a heavy burden.  Every day.  Every time I went to the fridge, I saw that list, the things I was supposed to be doing.  A constant reminder that I wasn't doing enough.  I wasn't enough.

I think us moms are way to hard on ourselves.  I know I am.  This idea that we have to do it all, be it all, every single day.  I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry.  We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife.  And that's just naming a few.  We wear a lot of hats.

We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids.  We argue with doctors who think they know more about our child than we do.  We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are.  How sad you are.  You love your child so much and your heart is breaking because he/she isn't walking.  Or sitting up.  Or talking.  Or standing.  Or whatever.  It's always something.  There is always something to work on, a goal to achieve, a milestone to reach.  A mountain to climb.  It's exhausting.

Caleb is 5 1/2 years old now.  I've learned over the years that Caleb does things in his own time.  He works hard and he does as much as his body will allow him to do.  And I've seen him climb many mountains.  I've seen him find a way.  I've seen him succeed.

 I've seen him find joy in mobility.

Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.

I've seen him do things we were told he wouldn't be able to do.

I've seen him do things I didn't think he would ever do.  Like crawl on his hands and knees.  He crawled on his belly until he was 3 1/2 years old.  I had all but given up on him ever being able to get his knees up under him.  But he did it, he got stronger, he figured it out.  In his own time.

 I've seen him graduate from HKAFO's to just AFO's.

And I have seen him walk.  I have even seen him run.

I've seen him get stronger and stronger.  I have seen him use legs that he can't feel.

And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion.  As Caleb has started school, I have found new things to worry about.  New goals to reach.  But I'm learning to just appreciate all that he is and all that he has accomplished.  My burdens aren't his to carry.  He isn't sad, so why should I be?  Caleb's a happy kid. He always has been.

Even when he couldn't hold up his head, he was still smiling.

Even when he couldn't sit up on his own, he was having fun rolling all over the place.

It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go.

Getting a wheelchair didn't make him sad.  He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired.  Beat down.  Sad.  Defeated.  Go look at your the precious child God has given you.  We have beautiful, strong, resilient, determined kids.  Our kids have and will achieve great things.  Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them.  They already have.  There is great joy in that.

Don't let yourself drown in the milestones.  Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like.  So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.

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.

Guest Post

Esther-Faith attends preschool at a VERY special school with exceptional teachers. In her classroom there are children with every range of disability you can imagine as well as a few peer models. She receives PT, OT, and when necessary, speech therapy right in the classroom. We chose the school because of the physical therapist. And we kept her there because of the teachers and the education she has received.

I love her preschool and will mourn the day she is no longer a student there.

Every morning when I drop Esther-Faith off at school, a little boy named Eamon greets us. "Hello, Esther-Faith!" he says. "Hello, Miss Karin!"

Their teacher shared a story with me about Esther-Faith and Eamon. During dress-up time, Eamon was dressing as a firefighter. Esther-Faith was ok with that idea, as long as his outfit included sparkles--so, she added some. Eamon didn't mind. And once "circle time" started, the teacher was having a hard time getting Esther-Faith and Eamon to pay attention. She said to Eamon, "During circle time, we need to have our eyes on the teacher." To which Eamon replied, "I only have eyes for Esther-Faith."

Eamon simply melts my heart every day.

We've become friends with Eamon's parents. They are what you might call "good people." The kind of people we want in our life even if our children weren't sharing diagnoses. Mike and Jenn are--in a word--wonderful.

Last night, Mike shared the following on his FB page. With his permission, I share it with you.

-----


My wife and I occasionally watch "16 & Pregnant" and "Teen Mom". While it's hard not to empathize with the teen parents, Jenn and I often look at each other and wonder what these kids would do if their baby were born with a birth defect or other serious health condition. Of course, none of the parents on the show have to deal with these issues. I find this very convenient.


Jenn and I were in our 30s when Eamon was born with Spina Bifida. Both of us are college graduates with good jobs. We both have supportive and loving parents. And you know what? Despite having all that going for us, it has definitely been everything we can handle both mentally and emotionally. At times, the stress has threatened to tear our marriage apart. All the while, we know Eamon's condition could be MUCH worse.


Love has seen us through, and has forced us into a level of teamwork most parents wouldn't understand. As I watch the shows, I honestly don't know how teen parents would handle it. That's probably for the best. When we received Eamon's diagnosis (before birth), there was a lot of "Why us?" The only answer that keeps me going is because God knows Jenn and I are strong enough to make sure Eamon grows up strong and smart, confident in what he can do in spite of the limitations that fate tried to put upon him.


No, it is not the life we would have chosen. But it's one I'll never be willing to trade.


-----

From Karin (at the HennHouse)

Redefining

Shopping at Target yesterday, an employee approached us as we approached the check out. At first, I wasn't sure what was going to happen. We often get stares. Sometimes comments. Sometimes, people walk big circles around us. I'll admit, we aren't your conventional family. But she reached her hand out and touched Esther-Faith's curls. Then she asked me, "What does she have?" Without hesitation I responded, "She was born with Spina Bifida."

She touched my arm and with excitement she said, "My daughter was, too!"

I could have hugged this woman.

We talked for about 20 minutes. Exchanged email addresses. I gave her this web site. Her daughter is 21. She has endured some 70 surgeries--more than half of them on her shunt. And she is an undergraduate at a university away from home. I was encouraged by her story, and relieved by the small world we live in. It was a great connection to make, and I hope to see Connie again and to meet her daughter.

On another note, we have finally celebrated Christmas with both sets of parents (everyone got one of these shirts from us for Christmas), and I can share these photos!

by Karin.
(from the HennHouse)

Neighbors

(Note: all links will open a new page.)

There have been so many times on this journey that I've wished I was an actual neighbor to one of you. Not a virtual neighbor--supporting through comments, prayers, and worry. But an ACTUAL neighbor. So I could bring you some chicken soup or a pie. So I could sit with your other kids while you tended to the one who needs critical care. So I could hold and spoil and sing to your adorable babies. So I could attend the fundraiser for Shea. Or share a cup of hot chocolate. Or just laugh and cry and hug.

I am so grateful for all of you.

I'm not sure I could have made it through some of the stuff we've been through this year without you. If you weren't on the other end of a computer screen sharing my fear and my tears. If you weren't sending me emails and leaving comments and just praying.

What comfort I had in knowing that you were there... understanding that it isn't just hair when you don't have a choice. Understanding that letting go is sometimes the hardest thing to do. Understanding that sometimes loving your child doesn't protect them from what is necessary for their survival. Knowing that some of you have been there-done that. And seeing that you are alright. Knowing that some of you read here for help and hope and inspiration. And seeing that what I say can make a difference--that you will be alright.

I don't know my actual neighbors very well. A couple of them--sure. But we live in a fairly transient neighborhood. We've been here 10 years. We've been here the longest.

But friends, let me tell you, my virtual neighbors are so vital to my life. Knowing that even though I can't actually feed you (because it is what I do), I can virtually feed you (which I'm getting better at). I am so glad to be your neighbor. So glad to call you friend. So glad to be wandering this Spina Bifida pathway with you.

Thanksgiving was tough for us. My dad--who left his home on Easter and hasn't been back yet--couldn't be with us. And my Tim with his broken foot. It was stressful. I didn't have a spare moment to think about what I am most thankful for. I was going through the motions.

But today, as I read about Shea. And as I looked at Cassie's SB party photos. As I made some new friends on facebook. Reading a piece by a mom who has SB, trying to determine if she is having a shunt malfunction. Reading about some of your own pain. And saying a prayer for you. Celebrating that Kingsley will be home for Christmas! Doing an actual dance in my kitchen when I read that Carson is going to be a big brother! And hundreds more... (check out the sidebar to read some AMAZING stories)

So, as I'm finding my way back from this year, thank you. For being my neighbors. And my friends.

Esther-Faith endures some allergy testing.
I had to keep her still.
While she screamed. And screamed.

Helping Esther-Faith add a leaf to the Jesse Tree.

Esther-Faith and my niece, Aurora, at Auri's birthday party.
I had a moment when Esther-Faith asked to wear this dress.
She hadn't worn it since her party in January.
Just days before she was hospitalized.

Watching "Elf"

Dreams

I so enjoyed this past week with the stories from family and friends points of view. So many people are affected by the diagnosis of Spina Bifida. Siblings, grandparents, aunts and uncles, and of course friends. When we first find out about a pregnancy we picture that child, his/her life, their personality and all that goes along with childhood.

I remember looking across at my husband driving from the doctor's office and my heart just broke. I knew how much he would have looked forward to teaching Toby football, basketball, Tball. You name it. At that time I felt like all those dreams were left back at the doctor's office. I felt like because this was his son, his first son, he grief really was greater than mine.

The funny thing about that is I THOUGHT those dreams were left at the doctor's office, but really they came with us. They just changed and were reshaped. We still plan on basketball for Toby just in a wheelchair, we still are eagerly looking forward to the day he's old enough for Tball just in a walker(one more year to go) and he loves throwing the football around.

During those first few weeks of finding out his diagnosis I mourned a lot. I mourned the loss of a child that I thought we would have. I mourned the loss of his legs, of his bladder and bowel function, of the life he would share with gracie. I mourned and mourned and mourned. I just wish looking back at that time that I would have realized what Toby was going to be.

How his life was going to take shape. How many things I cried over that are just normal now. Things that broke my heart in the beginning arent anything like what I pictured them to be. The imagination is always more dramatic than reality.

We just do things differently. But we still go out and live our lives. Our lives are still filled with an incredible joy and peace. Yes, I have my rough days. But overall life is wonderful and Spina Bifida is just part of it.
Luckily for me there are numerous people that share those rough days with me. There are those who went through the diagnosis. Who struggle with the pain, and who now are equally amazed at how incredible our life is. I thank God for the ones who struggle along side me, who cry with me and then who rejoice and laugh when I realize, 'hey that's not so bad."
I hope some of you who have been following this blog are encouraged. I pray you find hope in our words. For those of you have been through this who have older children. Myabe children who are even adults now. Let me challenge you to pick up a pen or sit down and write a email to those people who supported you, prayed with you, cried with you and rejoiced with you as they met the baby that would change your life forever. Sometimes, it so easy to forget or to think that they know how you feel about them, but its always a good idea to remind them.

Friends and Family

Kari asked us to have a friend or family member write our post for last week. I asked my 13-year-old son, Isaiah, if he would be interested. He was nine when his sister was born and hadn't even been our son for a full year. We adopted our sons and had our daughter all in our first year as parents. In addition to ADHD, ODD, and CD, Isaiah has Reactive Attachment Disorder (link will open in new window), and his only positive attachment is with his sister. These are his words. This is part of his story...





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 choas. 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.

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.

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.