Wednesday, December 22, 2010

Another talent to share!!

Let me introduce you to Jennifer!!


Jennifer has 2 little ones and still has time to make some beautiful things!!



Amazing TUTUs and HairClips and More!!





She's recently brought her talents to us online!! Yeah!!! And to help get her going and give us some fun she is offering a giveaway!!


ADORABLE LEG WARMERS!! I love love love these!! sooo sweet! Maybe your baby is past this age but go ahead and enter anyway, I dont know about you but I have about 4 friends I can think of right off the bat that are pregnant!! Baby shower gift!!
speaking of gifts, hop on over to her site and see her tutus, and hairclips. Love love love them! I think they'd make darling gifts for all those spring birthdays!

CLIC HERE TO SEE HER SITE!
Okay enough gushing! : )
how to enter.
same ol same ol way : )
a few different ways.
1. post a link to this giveaway on your facebook and then leave a comment about one of her products
2. post a link on your blog and leave a comment about one of her products.
3. Do both and ENTER TWICE!!

The winner is chosen completely randomly! actually, my 5 year old picks for me! SO keep on entering even if you havent won yet. It's Christmas!! Thanks again for supporting someone who is making beautiful handmade products!

Kari

there will probably be horrible typos as i am on my phone writing this, but i had to make sure you all see it.
joanna has added to the joining the journey tab for new and expectant mommies. make sure you check out the beautiful letters. if you wrote one and its missing please email it to me again if you can.
these letters encouraged my heart even thougb im well past tbe prego and baby stage

Monday, December 20, 2010

For the better

This is a repost from December 16 at the HennHouse. We've had a long week. It started with some severe problems with the teenager and ended with Esther-Faith's short stay in the hospital.

-----


Five years ago today, we received the diagnosis that would confound and change our lives. For the better.

But I did not have time to contemplate how far I've come from the fear and shock of that day, because we found ourselves back at the hospital--just 11 months to the day after the illness that would rock my world and kick start 2010. And five years to the day from when her Spina Bifida and hydrocephalus were diagnosed.

As it turns out, Esther-Faith's ventricles look good. Her shunt does not seem to be malfunctioning or failing. She is simply sick.

What joy I had to discover that she had a typical illness.

What ache I felt knowing that today could have gone so differently.

What blessing I felt to have my family and friends and even other SB moms and their families lifting my daughter in prayer and thinking about us throughout the day.

What pain I had remembering the day we found out that days like today would be our life.

What happiness I had walking into Esther-Faith's hospital room to see her eyes light at the sight of me.

What joy I find in the relationship my kids have with each other.

How hot the tears that came quickly and easily--and stayed all day--today.

What frustration with my own emotions.

What comfort in sitting around with each other reading the same books over and over again.

What tenacity in being able to make any room our living room.

What peace in the snow that falls on our cheeks even as we make our way to the emergency room.

What comfort in sharing our fear and knowing that you all stand with us and hold us in your hearts.

What surprise in discovering how strong we really are.

What bravery in a tiny, red-headed package.

What spirit in her cries.

What maturity in the way she talks to the doctors.

What simplicity in her hug.

What pain to walk away from the hospital where she is sleeping.

What delight it will be tomorrow when I see her again.

I am so blessed to have been given Esther-Faith. For whatever time and whatever reason, I am happy that she is my daughter. Do I wish away the Spina Bifida? Only if it will make her life easier. But I wouldn't change a thing about her. She is exactly who she is--and I love everything about her. Even the Spina Bifida and all of its complications. Even the ADHD and all of its extra energy. Even the fear and all of its side effects. Even the sassiness and all of its challenges.

What happened today changed my life.

What happened 11 months ago today changed my life.

What happened five years ago today changed my life.

All of it--for the better.



by Karin.
from the HennHouse.

Sunday, December 19, 2010

Surgery for Bear

The other day I couldn't find Madilyn. I knew she was in the house but she was too quiet. As I searched the house, I heard her in the playroom. I was curious as to what she was doing so I did not disturb her at first. She had rearranged her playroom. In the middle of the floor was an operating table complete with sheets covering it. Then her favorite bear was lying on his stomach. Her doctors kit was lying beside the table.

Very calmly she was telling her bear that he would be ok. "I will take good care of you" said Madilyn (bear was having spinal surgery.......and Madilyn was Dr. Fields).

I stood and watched her for several minutes before she realized I was there. I had tears running down my face when she looked at me. I asked how her bear was and she replied...."he is going to be fine!".

We then shared a hug....a long hug....and she turned and went back to what she was doing and I headed back to the kitchen. My heart was heavy at first because I knew that she was thinking about her upcoming surgery and then it was lightened because she found a way to process it all.

I am blessed because I am Madilyn's Mom.

I hope that each of you have a Merry Christmas! May the blessing of peace and love fill your homes during this most magical time of the year. Since next Saturday is Christmas, I will not post again until January 1st.

Best Wishes!
Jill

Saturday, December 18, 2010

Confession

So, I have a confession to make.
okay actually 2.

1. i named this post "confession" to get your attention in hopes you will read on. (horrible arent I?)

the real confession

2. I'm a skimmer. I skim super duper long posts. not always, but a lot of the time. if something is wordy, I skim. get the basic idea and move on. I skim when I read books, emails, facebook, blogs. I skim. so now that Ive confessed to that...here's the post.

I clicked on a blogged the other day because it had a picture of Shea and whoooo hoooo was it a long one. wordy and the whole nine yards. I got into skim mode, but as I started skimming I thought, wait a minute...this is good stuff. and started back up at the top and read word for word.
it was worth it. It made me laugh, made me cry, made me smile and made me feel every single word written. so if you are a skimmer like me, and you might even be skimming this right now. STOP!!!!!
click and pop over to theriddingfamily blog. and read her post about our commmunity. I loved it.
kari

Thursday, December 16, 2010

Friendships can be hard


Ive been missing in action!! I'm sorry!! Its that time of year where everything is busy busy busy. You all have kept me incredibly busy! And I am very thankful!!

So here is a quick post before I run out the door with 3 little ones to therapy.

This one is about friends. (our friends not our kiddos friends)

Friends can be tough situations sometimes. Sometimes things can be said and done, misunderstandings can happen. As mom's sometimes it can feel like a lonely life when it becomes aparrent that our lives are so different from our friends. It can feel like there is no middle ground. A playdate that is fun for others can turn into an incredibly sad day for us if we watch our child get left out, fall or just plain not be able to keep up. And yet no body knows. which then the loneliness comes into the scene.

When I have those days. Days when I feel like no one understands all I want to do is retreat. I want to break off friendships that are deep and meaningful. I want to go to surface relationships that I dont have to work on. I dont want to talk about how hard it is and I dont want anyone ti know how hard it is sometimes.

But really thats not the answer. Yes it can be hard. Yes there will be times of lonliness. But the worst thing we can do is to retreat. To hide. To sit under the rock of spina bifida and make that our excuse to not have relationships. Because really, if we start to do that what are our children going to do?

I have beautiful, amazing friends. Friends who want to understand, who want to be apart of my life and my children's lives. When I have those urges to retreat, to go run and hide I just have to plain stop myself. I have to get that backbone and say, "no way, no how." My friends are worth fighting through hurt feelings, hard moments and such feelings.

So anyways, I say all this to say. Keep on pressing, keep on being honest, keep on fighting for those relationships. They really are worth it in the end!!

Kari

Saturday, December 11, 2010

Our Home away from Home!

Over the past 4 years, Children's at Scottish Rite has been "Our Home Away From Home" with Madilyn. Once I realized that we would spend more time here than we would like, my thoughts turned to home. At home we feel comfortable. We know our neighbors, the mail carrier, the UPS guy and so on. We know where to go for food and were the TV is. My thought was....then why can't we make Madilyn's experience at Children's as close to home as can be.

We visited the library, the garden's, the Koy Pond, the put put golf holes. We know which elevators get us to where we want to go. We have nurses we have known for 4 years and we love them. Radiology is a breeze since we know the procedures by heart now. We know when to go to the cafeteria and when not to. The play room is a must and the arts and craft lady will keep Madilyn busy if you let her do what she does best!

The other things we bring from home. A good pillow is a must. The hospital pillows make Madilyn sweat soo bad. She loves a pillow from home with a soft and cozy pillow case. Her blanket comes along as well as an animal or two. These things make Madilyn comfortable and give her courage.

This week as Madilyn had another MRI that required sedation. She did so well. I really made sure she was well hydrated the day before so we could get the IV in the first time. It worked and not one tear was shed.

We have suspected for some time now that something was not right inside of there. Suspecting and knowing are two different emotions all together. We went from suspecting to knowing this week. Sometimes...I hate being right because I usually know what road we are about to go down....and so does Madilyn!
I think this picture speaks louder than words.

Another lipoma showed up on her MRI. It has only been 15 months since our last de-tethering. But, her symptoms are great enough to go ahead and see if the progression of nerve damage to her right leg can be halted. Madilyn has broken her foot in 4 different places. She can't feel it and we would have never known it was broken except for the swelling in her foot. Before she has broken just one bone at a time. Now she did 4 bones. This is alarming to us. After her last surgery she woke up screaming because she felt her foot for the first time in a long time and it was broken. This time could be worse for her if she begins to feel it.

The more damage to the nerves in her right leg, the more her bone softens the easier it is for her to break it without knowing. This is her third cycle of this and we finally put it all together. This is such a huge decision to put Madilyn through another surgery so soon. March, April and May were spent in and out of the hospital due to complications from her MACE Procedure. But, even with that, after she finally recovered, the surgery changed her life forever and we love the MACE.

Madilyn will have surgery on January 14th. Until then we will work with Orthopedics in trying to get her foot healed. She also got strep this week. Ugh.....

As I sat talking to her doctors this week, I once again felt an overwhelming since of gratitude for these people who have such an active role in our life with Madilyn. I love their honesty in evaluating her situation. I love that we can speak frank with each other. I love that they know I have done my homework before I have gotten to their office and they are willing to listen to me. Most important ...they have bonded with our daughter and she with them. They respect that she is older now and they talk to her and not at her. Our next appoinmtments will be December 28th. Until then.... we will work on enjoying this beautiful Christmas Season.

Wednesday, December 8, 2010

A Labor of Love

Hi everyone. I enjoy reading this blog so much, that I realized I seldom write for it. ;) I treasure it's existence -the inspiring posts from each of the talented authors. The way it brings everyone together through common love and shared experience.
The heart of it's goals: Educate. Ecourage. Relieve. Reflect.
It's a wonderful outlet. A welcome oasis from the everyday life where we are the minority.
A beautiful community of people looking to help each other.
We come here to share stories - and we leave stronger than we came.
And I'm writing here tonight for strength.
Because 2 are stronger than 1.
And 103 working together as 1 has to be incredible.
Did you know we have 103 followers?
Wow. That's amazing!
103 at followers not counting those who just follow anonomously.
So here I am - asking for your 103 hearts to open up for moment - even wider than the already are :) - and meet someone very special.
Many of you have already met little Shea. You have melted over his big brown eyes and shy smile. And then your heart has broken over his story.
The story of an orphan.
4 years old.
Born with Spina Bifida.
In need of a family.
And nothing can bring him home easier than making a donation. The extreme expense of adoption is what discourages and prohibits so many from adopting.
And nothing can help him find his family quicker than spreading the word. Knowledge is power. A week ago none of us knew who Shea was - now almost 100 people "like" Saving Shea on faceboook. That's progress.
So please. Share Shea with your family and friends.
Post it on your blogs. Link to it on your facebook profile.
Email. Text. Talk. Pray.
Never forget to pray.
Pray that somewhere out there - a waiting family will see their future little boy in Shea's face.
Pray that hearts will be opened in generosity and that everyone will give something. Don't underestimate the value of $5 - because every little bit helps.
And we need every - little - bit to help Shea.
If everyone on this blog gave 5 dollars that would be over 500 dollars right there!
Kari has designed Saving Shea bracelets - and for each bracelet sold Shea's account gets $5!
So I'm asking you tonight - to do what you can to help Shea.
Together - we can save a little boy who shares a common bond with our children - but lacks the family to support, love and fight for him.

So let us fight for him.

Monday, December 6, 2010

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"


Sunday, December 5, 2010

"Believe as a child believes...and the magic will find you!"
The face says it all.....

It has been a busy week at the Fields house. We have been busy decorating and finishing our preparations for a wonderful holiday season. A week ago I shared my thoughts about fretting over things I can not control....like the fact that Spina Bifida does not take a holiday.....EVER! But, as you can see from the picture above....Madilyn usually takes it all in stride.

This week is full of important appointments. We will be off to appointments that can not wait till after the holidays.....even if Madilyn would have it be otherwise.

Monday she will be having her 14th MRI and it will be the 21st time that she has been put asleep. Those numbers can be overwhelming to say out loud. But, this is just apart of Madilyn's journey. This MRI will be extensive. If we don't get out of Radiology in time....we will come back to Children's on Wednesday to see our Neurosurgeon. Thursday brings us to an appointment with our Orthopedic Surgeon and to see if he has come up with a plan for a broken foot that is not healing. As much as I would like to say that her foot is looking better...it is not.

Our goal is to keep the Christmas Spirit alive even if things are a little challenging right now. I am grateful for the blessings that fill our home. I am grateful for the opportunity to be Madilyn's Mom.

I will post an update next week. It is our wish that each of you have a wonderful Holiday Season!


Saturday, December 4, 2010

Trying again

Something that has been a great burden on my heart lately is each of you mothers that has had a child with spina bifida and may be thinking about trying for another child. This post is for you.

After Carson was born several people had made mention to me in regards to the fact that Carson would be my only child. Their lack of knowledge and understanding somehow led them to believe.
         1- I couldn't have more children
         2- I wouldn't be wanting more children.

Well, they were very wrong in their thinking. I definitely wanted more children, and as we all know having a child with spina bifida in no way affects your ability to have more children.

It does make things a little scarier and it does change your perspective of having a child.

After having Carson I decided not to return to birth control.... I am not opposed to it I just personally could not. So we decided that we would like to wait about 2 years before the next baby and we were going to be careful. :) LOL I found out I was expecting again when Carson was just nine months old.


OOPS...

Well I was regularly taking a prenantal vitamin and extra OTC folic acid. I was terrified to see my OB since he had very sternly instructed me to wait 2-5 years before trying again. When I did see him, I was shocked to find him super excited. I was scared for all the instructions I anticipated I would receive, but rather I left bewildered as everything was routine from my first pregnancy. He did give me a new prenatal Neevo ( which has something to help your body absorb folic acid) and a prescription folic acid. Then it was see you in 4 weeks.

I thought .... but the neural tube will be closed by then, and ..... what no extra precautions, instructions, testing... just see you in four weeks. Puzzled, and frightened I asked if I could return back in two weeks just for an update. He chuckled and said that would be fine.

I knew the days that would involve closure of the neural tube and I was scared beyond words... One of those days I forgot to take my prescriptions.... I cried because I just knew that now something would be wrong. I prayed because I knew the Lord was ultimately in control.

I went back for my next checkup and my OB obliged and took a look at the nothing that had changed sinced my last visit.

He then scheduled me for routine checkup in four weeks. I asked him about the perinatologist because I figured I would visit him often and be watched closely. No, We will set you up around 18 weeks.

Pregnancy has been pretty much just like Carson's. I've been sick, I've been tired, I've been scatterbrained, and I've been cranky.

On Wednesday, We saw the perinatologist. I was scared/excited. I could tell that my peri. felt the same way. He began the ultrasound and within a minute told us there were no defects involving the spine... definitely no spina bifida. Then he spent what seemed like 5 minutes looking over the heart/ tummy area. He was quiet and he let out a soft moan at least once. All I could do was pray and stare at the screen. Then he finally moved to the feet and said, "I am happy to tell you this baby is completely fine, and has no known defects."

At this news for some reason my heart stopped... very similiar to how I felt when I heard that Carson had his defect. It was surreal and it was amazing at the same time. After having a child with spina bifida I am carrying a child with no defects.

I have said all this ladies to encourage you... I know that if the choice had been left to me I may never had taken this leap of faith... rather postponed or excused myself into waiting just a little longer for our next child. But then, you know what, it would not have been God's perfect plan, and then we wouldn't be having this next baby __________ ( announcement of gender will be posted on our blog tomorrow 5pm PST)

Ladies, please know that you are not alone in your fears, nor are you less because of them. I want to encourage you, and I hope that is what I have done.

Monday, November 29, 2010

Crunches

Sometimes, we can all use a little help...

And as it turns out, any crunches will do...


I'm still trying to catch up with housework, appointments, cooking, Christmas preparations, etc... as one of the grownups at the HennHouse is down for the count. Two weeks ago Tim broke four metatarsals (one of them shattered) and his big toe during a soccer game. Last week, he had surgery. The surgery was supposed to last 45 minutes. It lasted two hours and 15 minutes instead. He has a job that requires driving. Per doctor's orders, he isn't to drive for six weeks. Unfortunately he has already exhausted his sick leave due to Esther-Faith's hospitalization (and recovery) earlier this year. 

It might be a light Christmas at the HennHouse.

BUT....

As Esther-Faith watches her daddy use his crunches, she is much more willing to try her crunches. She watches him get up, and she tries it. She watches him navigate small spaces, and she is more confident in her ability to get where she needs to go. 

In fact, when he first got his crunches, she insisted on showing him how to use them. 

It's adorable. 

And magnificent.

And hopeful.

Even if having Tim down for the count is stressful, it may be worth it if she gains the confidence she needs to continue developing her crunch skills.


by Karin. 
(from the HennHouse)

Saturday, November 27, 2010

Finding Gratitude

Time seems to slip through my hands sometimes. I missed my post last Saturday and couldn't figure out where the day went. I do that sometimes....especially when I am feeling stressed. When I am in this mode, its all about survival in a way. Sometimes it is just making it from sun up to sun down.

When I realized that days were getting by me, I had to stop myself. I literally had to say out loud....STOP....BREATH....and RE-EVALUATE. Kinda like the stop, drop and roll saying we all learned in Kindergarten from the fire man who came to teach us about fire safety. I have learned this week that there is power in those words.

Spina Bifida does not take a Holiday. I hope that my thoughts do not come across as "complaining" in any way as I attempt to express my feelings.

On Thanksgiving morning, I was still at work. I was on my run and was scheduled to arrive home at around 7:30 am. My husband was going to put the Turkey in the oven for me around 7:00 am. I had spent two days prior preparing as much as I could because I knew that I would be really tired on Thanksgiving Day. My mind was filled with all kinds of thoughts as I was driving. I was thinking of the baby I had lost on Thanksgiving morning several years ago. I was thinking about Madilyn. I was hoping she was sleeping peacefully. When I left for work around 11:00 pm the night before she was not feeling well. I was thinking about her broken foot and the conversation I had to have with her Neurosurgeon. I was reviewing her upcoming appointments for her MRI on Dec 6th and her next appointment with our Orthopedic Surgeon on Dec 9th. Then I was troubled that she would miss all the fun stuff at school in the month of December. I had promised her that she would not miss a thing this year...... I was thinking about how frustrated I was with Urology. Then.....all my thoughts stopped.

Me and my car were up on its right side in a ditch. The wheels on the left side where up in the air. I am not sure what actually happened. I was perfectly fine. My car just neatly slide in the ditch and it was fine. Without boring you with all those details, I will say this. I was only delayed about an hour and a half getting home and I was sooo embarrassed by the entire event.

Now, what did I learn......

STOP, BREATH and RE-EVALUATE. The entire night I was so consumed with everything that was going wrong. I was also fretting that it is the Holidays and why does Madilyn have to deal with this stuff right now. I was probably just overly tired because this in not my normal train of thought but my experience of hanging in the air in my car brought me back to my center.

As I sat, waiting for the wrecker, my boss and a surprise visit from a firetruck and 4 police cars, I started counting blessings.

I am grateful for those who love and care from my Madilyn. I am grateful for phone calls that get returned and appointments that get scheduled quickly when things arise. I am grateful for the skillful hands of her surgeons that have been able to preserve function and have been able to make her life better when function has been damaged.

I am grateful for Madilyn's smile. I am grateful for my two older children, Berkley and Tyler, who patiently endure the up and downs of Madilyn's medical challenges.

I am grateful for my husband...who quietly stands by my side and holds me up when I get so rattled. I am grateful for him putting my turkey in the oven on Thanksgiving morning when I was in a ditch. I am grateful for his faith when mine is weak.

My list goes on and on..... By the time everyone arrived on the scene I was smiling and grateful for the blessing of my life.

No Spina Bifida does not take a vacation during the holidays. But, after I stopped and took a deep breath, I realized that we can have a wonderful holiday season not matter what comes our way. This was something I already new. But, I somehow I had lost sight of.

We had the most wonderful Thanksgiving ever. Our family arrived from out of town and our home was filled with love. I found my center and thanked the Lord above for his safe keeping.

May the blessing of gratitude fill your home during this most wonderful time of the year!
Best Wishes,
Jill aka....Madilyn's Mom

Wednesday, November 24, 2010

And the winner is...

AND THE WINNER OF THE BEAUTIFUL HEADWRAP BY LITTLE PENELOPE LANE
IS
COLLEEN (from choo choos and TuTus)
Thank you all for entering!! Remember even if you dont win You are supporting a fellow friend/mommy. Putting yourself and your business out there is a big step and its wonderful to see posts and compliments and whatnot out there on the web! Thank you for supporting the blog, and Little Penelope Lane. Make sure you go check her site out on facebook!!

Monday, November 22, 2010

One day at a time

It's been a super busy week at the HennHouse.

More busy than usual... as the husband had a "mishap" at soccer this week.

That "mishap" resulted in a night-long ER visit and three broken bones in his foot.

Those three little broken bones have kept him off his feet. Literally. He's not been able bear weight, drive, or do any of the routine medical care for Esther-Faith.

Umm... I was feeling a little overwhelmed.

One thing we do at the HennHouse though, is try to see the humor in each adventure. Or FIND the humor.

For example, I find it HILARIOUS that Tim was in so much pain the second night of this adventure that he LITERALLY pushed me off the bed. As in, onto the floor.

Yeah.

I've been sleeping on Esther-Faith's floor the last few nights. Not well. But at least, I remain in the same place where I went to sleep.

And, I find it HYSTERICAL that even though she is not remiss to remind us how tired she is of soccer, we find her in her brother's old cleats shouting out the front door at the other brother who is practicing his skills, or sleeping snuggled up with a stuffed soccer ball.



So, we'll see the surgeon this morning about Tim's foot. And in the meantime, we will take it one day at a time. And we'll try to laugh through the added stress and see the humor through the pain.

by Karin (at the HennHouse)

Wednesday, November 17, 2010

A letter from you

Picture something with me.
You are sitting in your living room drinking your morning coffee, relaxing on your couch. (I know we are dreaming arent we!!) All of a sudden you hear a knock at your door. (do you hear the knock?) You open the door to see a woman with fear, uncertainty and every other emotion you can imagine in her eyes. You look down and notice her very pregnant belly. You welcome her into your home and she sits across from you in your living room on your couch. Her story begins. She has just found out that her baby that she is carrying has Spina Bifida. She doesnt know the details, the level or really any of the medical terms. But she knows the fear. She is a stranger to you, but she's just become your friend.
What would you say to her? If you had this moment with every mommy who came across the diagnosis of Spina Bifida what would you want to say? What would you share?
If you noticed on the top of our page Joanna has done an amazing job with different tabs. There is one tab called, "Joining the Journey." This tab is for that mommy. The mommy who might not be able to sit in your living room, but she's on her computer googling and trying to find anything she can possibly find. Maybe she'll find us. What would you want to say to her? If you are willing please write a brief letter 1 - 3 paragraphs long of what you would say. It doesnt have to eloquent, It doesnt even have to be spell checked. : ) But Id love for this tab to be filled with your personal words. If you are willing please send me a message on facebook with your letter or email it to me at kari.leann@hotmail.com
We are a message of hope. I want our message to be clear. I want it to be OUR message not just mine!
Thank you to all of you who I know will undoubtly poor your heart into this.
Kari
ps dont forget to scroll down and support by joining in on the giveaway!

GIVEAWAY TIME!!!!


SO its that time of year where we all stress about what to get for who. How to pay for what we got for who?And if the who will actually like what we got. STRESS!!


So why not get an amazing gift for FREE!!


As someone who handmakes things I totally understand the work and beauty behind things that arent created in wal-mart facilities and whatnot.



This amazingly beautiful headwrap is created by our very own friend Sarah Hull from Little Penelope Lane
I love them!! I love all of her stuff and want to order a little of everything! The great thing is that these can be for mommy's, daughters, aunts, cousins, therapists. You name it!! You could finish half your Christmas shopping!
Here's a basic description of the product
These easy to wear hair wraps by Penelope Lane are perfect for all ages! One size fits all, as comfortable cotton fabric adorned with two flowers simply tie at the end to fit your comfort level!
So I know you are all dying to know How do I enter!!?? Well the same way you usually enter on here!
There are a couple different ways.
1. Post a link to the giveaway on your blog
2. post a link to the giveaway on your facebook
then after you do that leave a comment about why you'd like to win this hairwrap!
YOU HAVE FROM RIGHT NOW TO 24 of November to ENTER!
A special thanks to Sarah hull for offering her handcrafted talents to us for this giveaway!

Monday, November 15, 2010

a little challenge

Frequently while I am checking out at a store, or eating in a restaurant I am asked about Carson ( guess he's cute not to get attention) Always, you get the typical baby questions. Age, weight, diet, and then milestones. Oh the milestone part. Here are a few examples....

"Oh, he must just be getting into everything then as he crawls around"

" When did he start crawling?"

" Is'nt so much nicer now that he can crawl around."

And now that he has turned the big one, the questions are going towards walking.

Today, while at Target the clerk who also had a near one year old boy asked me if he had started walking... hers was close.

I quickly answered her "No. not yet, he has spina bifida so were just not quite there." She was obviously curious about it, and wanted to know more.... the door was wide open... and I changed the subject. I had the perfect opportunity and I didn't and grrr am I dissapointed with myself. Now she may go home and google it and become misinformed.

Sometimes these questions and moments are hard. They strike chords in our heart that can bring tears. But ladies, we have an opportunity in our children to help others. To spread awareness. To encourage. Our kids are miracles... Our kids are blessings... Our kids have spina bifida. Let's not hide that, let's not pass up opportunities.

I challenge you this week to somehow tell at least one person what spina bifida is. The truth about it.

Remember we are REDEFINING.

Sunday, November 14, 2010

Taking care of YOU

Kari used to write a regular series called "Taking care of YOU" where she gives advice and tips about taking care of yourself.

You can see some past posts here and here and here.

I thought of Kari and the "Taking care of YOU" series today as I was cathing my daughter in a too small bathroom stall at the outlet malls. We had been waiting for the lone disability access stall for more than 15 minutes as patrons who had too many packages for a small stall used the disability stall, and then I decided we would try a smaller stall.

Esther-Faith was a trooper in the truest sense of the word. She transferred out of her wheelchair--clinging to me--and into the bathroom because there was no space in a small stall for a wheelchair. We wrestled out of one KAFO and half of the other, tucked her dress up so it wouldn't fall into the toilet, tugged and pulled at her pull-up and tights, and balanced her over the pot.

Just as I squated in front of her to provide assistance, I realized, I really had to use the bathroom myself. I mean I REALLY had to go. I should have gone first.

It was a really uncomfortable five minutes as she cathed, tugged and pulled the clothes back on, wrestled back into the KAFOs and shoes with no space to do so, and switched places so mama could do what she should have done first.

There is merit in what the airline flight attendant says about getting your own air mask on first so you can be the best help to your child. The same goes with toileting. Take care of your own needs. Go first.


By Karin
(from the HennHouse)

A Case of Second Guessing

In September Madilyn had appointments at the Spina Bifida Clinic. We had waited almost two months to get her in to see everyone. I had lots of concerns about her that day and was well prepared. I gave voice to each one and eagerly awaited the responses.

Madilyn had been falling down a lot. She even started falling down our stairs at home. Her foot was more swollen than usual and her Achilles tendon was extremely tight once again. Since Madilyn can not feel her right foot, she can injure it and not know.

So, when Orthopedics came in to evaluate her....they basically blew all of my concerns off. (Side note: New Doctor in Clinic that we had never seen before and I don't think he bothered to read her chart!) I had never had that happen before. I was so frustrated when I left that day....especially because I was told that she was just a clumsy kid! I knew better. Madilyn has better balance than anyone I know because she learned to stand on a foot she can't feel and it is the same foot that she can ride a scooter on. The funny thing is, she never uses the foot she can feel!

My confidence in my observations was shaken that day. I only voice concerns when I know something is off. After that visit, I watched a decline in Madilyn's foot. I battled with the voices in my head.....call her regular Orthopedic Doctor......not call him. This scenario played out for several weeks. Finally I called. We had to wait to see him but I didn't care. I just wanted him to see her foot and leg. If he told me that she was clumsy, then I would accept it and move on.

Thursday was the day we were to meet with Dr. Busch, who happens to be amazing. Right before I was to head out the door to pick up Madilyn at school, his office called. The X-ray machine was down and he would have to reschedule. I was so frustrated. I said ok and they reschedule for next week. But, after I hung up the phone, I started crying. I couldn't stop crying. I had that feeling come over me that said.....CALL THEM BACK NOW! I did and headed to another location to get that X-ray.

Lets just say...it was bad. Very Bad. Two other surgeons looked at the X-rays and couldn't believe what they saw.
Madilyn is sporting a pink cast that has beautiful glitter applied to it. We will see her Surgeon on December 6th to determine how he is going to deal with her foot.

What did I learn from all of this? Trust yourself Momma. You know Madilyn. You have watched her from the time she was born. If you are concerned then trust yourself. If all avenues have been explored and things are determined to be ok, then that is ok. No harm done. If you are right........well, need I say more.

Wednesday, November 10, 2010

We've got about 27 members on our flickr group and some posts!! I love seeing all the pictures!!

Make sure you pop on over and check them out and dont forget to leave a comment on your favorites

Hopefully there will be some flyers and advertising going on soon for our next order which will actually start sometime next week. The shirts WILL NOT BE ORDER TILL THE FIRST WEEK IN DECEMEBER THOUGH! : )

And this time we are going to make it a little competition. Leigh and I talked and we decided that the national SBA really probably gets quite a bit of LARGE donations but the little chapters dont. : ( So this time we will be giving the proceeds over to whichever AREA raises the most support with the highest number of orders. So make sure you call your local chapters and let them know!! This will be my final order for some time maybe even a year. : (

thanks you all!!! Your wonderful. Will post the flyers on here when they are done and then you can print them or send the website info to anyone you know.

Kari

Tuesday, November 9, 2010

Life as we know it

We've traded late night, happy hour dates for early morning mini conferences on raising spiritually healthy special needs kids.

And we wouldn't change a thing...



We've traded Big Ten athletic events for seventh grade basketball tryouts.

And we wouldn't change a thing...


We've traded philosophical discussions about politics and superpowers for tearful heart-to-heart talks about how best to love a child who is incapable of positive attachment.

And we wouldn't change a thing...


We've traded gym memberships for DVD workout programs done at four o'clock in the morning.

We've traded wine tastings for zoo visits.

Night clubs for dance parties in the living room.

Weekend getaways for overtime.

Afternoons of landscaping for weekend soccer tournaments.


Routine gourmet meals for crock pot stew.

Sports cars for dented, scratched SUVs that fit tiny, red wheelchairs and overstuffed schoolbags.

Professional development seminars for IEP meetings.

Long hours working on the climb up the ladder for evenings at home reading children's books.


Big bank accounts for home equity loans.

The fast track for the mommy track.

Walls filled with certificates of accomplishment for a decidedly slower life filled with real accomplishments.



Life as we knew it for life as we know it.

And we wouldn't change a thing.



by Karin.
(from the HennHouse)


note: this is a repost from the HennHouse. 

Monday, November 8, 2010

Cherubs story- Lesson #51

Hi everyone!  I posted this on my blog last night but wanted to add it  here as well. This is a story that was written for me and presented at my baby shower.



Cherubs story- Lesson #51
It was a BUSY day in Heaven! Oh my, so much was happening!  That meant that there were so many things to record in his big book that Angel had been sitting at his desk working steadily for... well... for quite a long while!

All of a sudden, Angel heard a sound he knew very well.  His young friend, Cherub, was coming his way.  Well, not just coming his way, but galloping like a runaway horse AND yelling very loudly at the same time.

"Angel, Angel!"  Cherub slowed to a fast trot as he breathlessly called out "Angel! Angellll! Are you here, Angel!?" 

As Angel stood up to welcome Cherub, Cherub BURST through the door and ran smack-dab into Angel! They rolled across the floor, robes, legs and arms spinning in wide circles.  Before Angel could pull his robes down over his knees, Cherub bounced up beside him, talking very loudly and very fast.

"Angel, God has another baby almost ready to go to earth!  But, Angel, I was watching, and He's not finished with the baby, and He doesn't know it because He's already started His Special Blessing Song.  Oh, Angel, help me tell God the baby isn't done yet! Please, Angel, we have to hurry!  Otherwise God will make a mistake!"

At this remark, Angel knew it was lesson time again.  Yes, indeed, it was time for Lesson #51 about God.

"Come along, Cherub."  said Angel, holding out his hand so that Cherub would lead him directly to where God was at work.  Cherub chattered excitedly about the new baby as they hurried to a special valley known in Heaven as "Babies Place".  As they entered, Someone was singing in a soft voice.
"God your Father loves you so,
Loves you so,
Loves you so.
God your Father loves you so
Now off to earth you go."

Cherub yelled before he even knew what he was doing!  "NO!"  And then, because he was terrified, he hid behind Angel's robes, hoping that God couldn't see him.  But Angel knew Cherub had to learn lesson #51, and so he reached behind his back, caught Cherub's arm and pulled his young friend around to face God.

God was looking right at him!  Then He spoke right to him, "Cherub, do you have something to tell Me?"

Cherub pointed to the baby boy in God's arms and blurted "God, that baby You're holding isn't finished!  Don't send it to its home on earth yet!"

God gazed down at the baby boy and then looked up.  "Yes, Cherub, this little boy is ready to got to his home on earth.  His Mommy's name is Karen and his Daddy's name is Bob.  They are waiting for him right now."

"But, God, his back isn't finished and his feet need a little more work!  Can't you please just finish him before he has to go?"

"Cherub, would you like to hold him?  His name is Carson."

Cherub looked up at Angel who nodded his head yes.  Cherub ran to sit beside God, but God pulled him right onto His lap and put little baby Carson in Cherub's arms!

God began speaking so softly that only Cherub could hear His voice.  "Cherub, you are very young.  Some things are not going to make sense to you right now.  Cherub, do you trust Me?"

As he thought about his answer, Cherub counted the baby's tiny fingers - yes, there were ten.  "Yes, I trust You."

"Will you trust Me even though you don't understand what I am doing in Carson's life?"

Cherub counted Carson's toes - yes, there were ten.  "Yes."

"Carson's mommy and daddy already know that Carson will need some finishing work on his back and feet.  But, Cherub, they know, and they already love him so much, they can hardly wait for his arrival."

Cherub continued touching the baby's soft skin.  "They know he's not finished but they love him anyway? Really God?"

"Yes, really."  God and Cherub looked at each other, and then Cherub hugged God's neck with all his might.  "God, I do trust you.  I'm sorry I yelled at you.  Will you forgive me?"

God hugged Cherub very closely and said in his ear, "You are forgiven, Cherub.  Now, would you like to sing My Special Blessing Song with Me before Carson goes to meet his mommy and daddy?"

As they watched Carson being whooshed over the edge of Heaven, carried in his guardian angel's protective arms, God and Cherub blended their voices in joyous song (of course, Cherub sang the loudest!)

God your Father loves you so,
Loves you so,
Loves you so.
God your Father loves you so
Now off to earth you go!

Later, as Angel and Cherub walked back (well, Angel walked, but Cherub - he ran back and forth looking at all the flowers beside the path), Angel asked Cherub, "What did you learn about God today?"

Although Cherub continued to examine a big yellow sunflower, he answered immediately and loudly, "God never makes mistakes!"

"Cherub, one more thing you might like to hear is a chorus that Carson's mommy and daddy learned as a choir song at their church.  It goes like this:"

God is too wise to be mistaken,
God is too good to be unkind.
For when you don't understand,
When you don't see His plan,
When you can't trace His hand
Trust His heart.

After a rare moment of silence, Cherub asked "Angel, isn't that like Proverbs 3:5 and 6?"
And, of course, it is.


Saturday, November 6, 2010

Another Hard Conversation

This afternoon Madilyn and I were playing in the living room. She asked me if I had ever danced the "King Frog" dance. For those of you not familiar with this, it happens to be from Angelina Ballerina. I told her I had never learned that dance.

She them proceeded to put her feet in 5th position and then begin her version of the dance. I cringed every time her right foot planted on the floor. She turned and looked at me and said...."Mom, you are not supposed to frown while I am dancing!". I told her I wasn't frowning but I was just watching her foot. That was not the right answer for a little girl who wants to be a ballerina like her Mom was.

Madilyn has an appointment this week with Dr. Busch. It will be a miracle if her foot is not broken again. She can't feel it. But, it is twice its normal size right now. She has a big swollen ridge on top that leads up to her ankle. Even her compression stocking is not helping with the swelling. No one in the ER would want to handle this so we will wait out the weekend.

After her lovely dance, she told me she wanted to sign up for ballet now. I reminded her that we just can't do that right now and she could talk to Dr. Busch about it. She looked at me and said she would talk to him.

Then, she said...."Mom, Dr. Busch always fixes my leg and foot, so I know he could make me a special ballet shoe so I can be a Ballerina like you Mom".....the faith of a child.

Sometimes I can't make things all better. Sometimes there will be limitations. Sometimes things don't go as we planned. But, sometimes....with a little imagination and ice cream we can have a magical afternoon and dance the "King Frog" dance and all is forgiven and we carry on......until the next time we have this conversation again.

Best Wishes,
Jill

Friday, November 5, 2010

Clarification

First off let me apologize if my last post offended anyone in anyway shape or form. As I am sure most of you realize that is never ever my intention.

Secondly I want to let everyone know that I do not view wheelchairs as a "dead end." The post was never intended to be a bashing session for wheelchairs.

Toby received his first wheelchair around 1 1/2 and we loved that thing. We loved watching him go through stores and get around and play. It was an amazing life line for us.

However, with the progress Toby has made we would see going back to the wheelchair as a step backward because of how well he is walking now. Not that the wheelchair is in and of itself a bad thing just seemed like going backward.

My main goal in writing is to encourage all of us as we face the unknown, therapists, doctors, family members and friends. I look at us as a team raising our children and pushing them to be the very very best.

I see us as truly Redefining Spina Bifida. Not just wearing a shirt that says it. I see us as redefining the charts, the therapists, the things are children are told they cant do. I see us doing those things, breaking the charts, leaving the therapists in awe of our children's strength.

I hope that clarifies a few things for everyone. Again, I love Toby's wheelchair and I will always love his chair. It gave him mobility when nothing else would. The post was never intended to be about a chair but about potential.

Feel free to contact me with any questions or concerns about ANYTHING that shows up on the blog. I always want the chance to clarify or apologize.

Tuesday, November 2, 2010

anyone sick of this yet?

Anyone sick of hearing me saying, "DUMP YOUR THERAPIST IF YOUR THERAPIST ISNT AMAZING?"

I know. I'm kind of sick of me writing it. But again I am on this topic.

I thought that losing Todd was the end of great therapy as we know it. Seriously, the end. Feel free to pop over and read my post after finding out.

I posted today over at Raising Toby about our amazing therapy appointment. (its worth the read) : )

I wanted to post over here too. Today I had a long hard talk with Toby's therapist Selina regarding outcome charts with Spina Bifida Kids. Now let me preface this with the fact that Selina is actually an expert on Spinal Injuries and travels around the US on the weekends to teach workshops to other therapist. Don't ask me how we ended up with her, except to say that God is really amazing and is taking care of us and Toby.

So really, this post wont make sense if you havent read the other one. So if you dont have the time, go skim it really quickly. : )

So anyways, she basically said that those charts are JUNK!! and she actually teaches that in her workshops. She explained that the problem is that some therapist will stop pushing a child because textbooks tell them that the child has reached its potential or that the child will be a fulltime wheelchair user so to not push to hard for walking. The text books tell them what muscles will be able to be used and what sensations they will have and some therapist will just stop right there.

So after therapy and finding out all of this information. I stopped and thought about all of you. I thought about your children and your therapists and your situations. And I'll be honest, I dont truly know you. I dont really know your children and their therapists But I wanted to just encourage you all to really evaluate what your child is working on and what your child is being pushed to do. I didnt end up with an amazing Selina till Toby was four years old. We didnt get Todd till Toby was 3. That's 3 years of lost time. 3 years of no pushing, no amazing sessions. 3 years of textbook work. Did we get some stuff done in 3 years, absolutely. but looking back we could have done so much more. I thought of your children because I thought oh I hope that have selina's out there. I hope that have amazing therapists. I hope these children will be pushed and not just left for a textbook result. I know as a mom sometimes we trust our extincts but sometimes we just have to trust the medical professionals, but sometimes those medical professionals just really dont know. They arent trying to hurt our children or anything, they really just dont know. I hope you all understand where I am coming from.

So I'll say it again...maybe this will be the last time. Maybe not.

DUMP YOUR THERAPIST IF YOUR THERAPIST ISNT AMAZING!!

or at least have a deep heart to heart : )


Kari

Monday, November 1, 2010

Progress... sort of

A couple of weeks ago, I posted about Esther-Faith (finally) starting to take slow, tentative steps with forearm crutches.

And last week, about the irony of her braces breaking a couple of days later--after we had already ordered a new pair of HKAFOs.

And last week, we picked up those new braces. The waistband and twister cables can be removed and put on as needed (we'll put them on when she gets fatigued). The AFOs are actually pink this time. Even the velcro is pink.

Our girl was happy.



The orthotics specialist is a perfectionist. Which is exactly how I like the person who is building the equipment that helps my daughter walk. We spent hours putting the braces on her, watching her walk, taking them off, making adjustments, and over and over again. And despite missing her nap, she was good-natured about it.



For a couple of days, we let her use the walker. Then, on the way to preschool one day, she decided she just wanted the crutches--just for that day. She isn't very good at the forearm crutches yet, so I was a little hesitant. But her PT was going to be there as well as lots of PT, OT, and other students.



Apparently, she did well.

And she did it again on Sunday.... until about nap time. Then, it was like we all took the quickest train available to meltdown city. We had to bribe her with candy and cartoons to get her to walk to the car.

Yes. I bribed her. I'm not (that) ashamed.

Yesterday, she showed off her forearm crutch skills for Papa in the nursing home. Today, she used the walker. I'm not sure what will happen tomorrow.


As with just about every bit of progress she makes, we'll take it one day at a time. I recall a time when she hated the walker. And the wheelchair. But she made progress. And when I step back from this situation, I can see that she will again.



This day belongs to the LORD!
Let's celebrate and be glad today.
Psalm 118:24

Sunday, October 31, 2010

Human

(*new version with added verse.)

During my pregnancy, I felt what I called "waves" of grief as I tried to wrap my mind around Brooklyn's condition. Sometimes I hoped so hard that the reality would creep up and smack me pretty hard...when I saw a child in a wheel chair or as I watched my other girls happily dancing around the room together. No matter how much time had lapsed, it still took me off guard.

It still does.

I often wonder if that is a sign of denial or if it is faith. I guess it's a fine line.

I have always considered myself a pretty logical person -- one part optimist; one part realist. I can handle my emotions and am pretty good at expressing them. I am definitely not one to bottle things up.

Well, this past week, I realized that I might not be as logical as I thought. Nope... it turns out I am human after all.

About a month ago, we met with Brooklyn's urologist, who confirmed that she was indeed eliminating completely and didn't need to be cathed. Hooray! BUT, her bladder was abnormal and borderline spastic, so she suggested a low-dose of Ditropan (Oxybutynin) to relax her bladder and perhaps elongate it a little. The hope was that this would give her a better chance at potty training some day. We didn't have to give her the meds, but it was a proactive measure that could help Brooklyn in the long run. We would have to start cathing her twice a day, but my husband and I agreed it was the right thing to do. It honestly didn't seem like such a big deal. Or so I thought.

At first, the excuses were easy. My husband had just had knee surgery, and I was running the house solo while also playing nurse. I didn't need one more thing to deal with, so I put it off...the meds and the cathing.

Then I finally got the prescription filled, but I forgot to ask for a syringe. And I somehow forgot the next 10 times I went to Target.

Finally, I remembered the syringe. But I still didn't give the meds or cath. And I was running out of excuses.

One night last week, Brooklyn was having a particularly fussy night, and my husband asked me if I had been giving her the meds and cathing her. "No," I said quietly.

He then suggested we cath her to see if that was the problem. I tell you that the second he cathed her, she stopped crying. Like instantly.

I looked up at my husband and the tears were starting to form. "I'm sorry," I whispered. One look at me, and my husband understood. He then offered to give Brooklyn her meds and cath before and after work until I was ready. I nodded in agreement, and he handed me Brooklyn and said perhaps I needed some alone time with her. I felt so weak. So ashamed.

As I held Brooklyn that night, I cried. A hard, grieving cry.

And then I prayed. I asked for forgiveness, but in all of his awesomeness, God didn't give me guilt. Instead, He gave me peace and grace and strength.

And you know what? The next morning, I cathed Brooklyn and gave her the medicine. I didn't like it, but I was at peace.

I know that this is not the last time I will grieve, but I also know now that it is okay to feel that way. In fact, it's normal.

I...no, WE, are allowed to be human. It doesn't mean we don't love and accept our children for who they are; it just means that it is hard sometimes. It's also a reminder that we are ONLY human and that we can't possibly do this on our own strength.

*Nehemiah 8:10
"Do not grieve, for the joy of the LORD is your strength."


~Lisa (@ Heaven Sent)

Saturday, October 30, 2010

You know you've hit the big time when..

You know you've hit the big time when...


YOU HAVE A FLICKR GROUP : )



I have so enjoyed the text messages, emails, facebook notes, and babycenter posts that many of you have already received your shirts.
(hopefully the rest of you will receive yours monday or tuesday)

However, it hit me that it would be so much fun to SEE everyone in their shirts. Soooo.... Taadaaa
A flickr group was born.

This group is not just for shirts. Its for surgery sites, children's pictures, milestones, necklaces, anything and everything related to spina bifida. Post away!! It takes about 2.3 seconds to create a flickr account and then you can add in pictures and we can all comment!!
Pretty awesome if you ask me.
So the name of it is. The Journey: Redfining Spina Bifida
or here's what the URL looks like http://www.flickr.com/groups/spinabifida/

Thank you all for your patience and understanding with the shirt process. It has been so much bigger than any of imagined and there have been some might bumps in the road, but hey its been great!!
Hope to see your pictures soon

a gentle reminder....

It has been a very hard week. My mind has been troubled with decisions I need to make in regards to my Madilyn. My thoughts have distracted me completely. I am sure I am the only Mom this happens to in the world....at least that is how it seems sometimes.

Today I opened my mailbox and peace filled my heart when I opened a package. My "Redefining Spina Bifida" T-Shirt arrived. I quickly examined it and read the words on the back of the shirt.

STRENGTH
COURAGE
ENDURANCE
FEAR
PATIENCE
LOVE
TRUST
HOPE

As I looked at those words, I realized that I have been stuck in the FEAR Factor all week. I always try to live with Strength and Courage which in turn enables me to endure the trials that come from being a Mom with a child who has Spina Bifida. This week has not been that kind of week.

FEAR is a part of this journey. For me, it switches between the fear of the known and the unknown. There was a time when I thought this meant that my faith was just not sufficient enough. After 6 years on this journey, I think that I was wrong in that assumption. I am just human. I often find myself counseling my Father above instead of listening and learning his will. I think that he knows me well enough to allow me to fret around sometimes and then when I am ready to step past the fear, the rewards come after much patience on my part. Love, Trust and Hope have room to grow and flourish and sustain me.

The amazing aspect of being apart of this community is we each are at different places. When one is weak, another is strong. When one is afraid, another has calming words that lessons the fear. As this month of Spina Bifida Awareness comes to a close, I am grateful for the lessons I have learned from each of you.

Best Wishes,
Jill

Friday, October 29, 2010

A tiny glimpse

Sometimes I wish I had a glimpse into the future when I was pregnant with Toby.
Sometimes I am glad I didnt.
Sometimes I wish I could have sent myself now back to tell my pregnant self some things about how our life would be.
Sometimes I am glad I couldnt.


I dont think I could have been able to grasp the feeling of a doctor taking your baby out of your arms for a surgery.

I dont think I could have handled knowing the frustrations of people saying stupid things.

I wouldnt have been able to comprehend all then ends and outs of potty time at our house.

But you know what I wish I could have seen and could have known.

What it would feel like to see my child walk for the first time after 3 years of therapy.

What it would be like to watch my child laugh and play and learn just like any other kid.

What it would feel like to see my child get handed a trophy after playing tball.

I wish I could have had those glimpses. I wish I could have understood those parts. To see his face and to see all of our faces. The happiness. The joy and the amazement of what our lives have begun.

There are parts of my life with Toby that I'm glad I couldnt see and couldnt understand because I wouldnt have understood the parts of my life that make those hard parts so incredibly worth it.