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

From my family to yours...

Merry Christmas & Happy Holidays!!!

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.

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

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

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

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.

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.

Shea.

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.

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"

"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!

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.