Announcing Our New Facebook Group – Wonderful Wears

We are so excited to share with you our newest project, our new facebook group “Wonderful Wears”.  What are we all about you’re probably wondering, right? Well, I’ll tell you. You know how fast our kids grow out of clothes, they are just little weeds aren’t they?  Well, I thought to myself there is no sense in just tossing out our childrens specially made clothing.  There are other kids who could use them so that is where Wonderful Wears comes from.  This is a closed, private facebook group and we would love for you to join us there.

wonderful wears

The Wonderful Wears facebook group is a parent to parent clothing exchange group for our specially made kids!  As I mentioned before it is a closed group so you need to request an invite and the moderator will approve you.  Please feel free to share this group with others you know who may be interested – parents, therapists, etc.

We look forward to seeing you there.

Keeping it warm and having fun

Because Haylee was born with nubs on her left hand instead of fingers we have had a few challenges with that hand. Some challenges are very serious. But others we try and make as much fun as possible. We never let Amniotic Band Syndrome get us down!

One of the issues that we have found is keeping that little hand of hers warm. Because she does not have fingers to always move on that hand then the circulation is not as good as it should be.

Often times her little hand will get cold or even worse it will start to turn purple. Normally we put on a sock that we got when she had flower her prosthetic hand. But a little hand sock is ok but Haylee wanted something cooler and more fun.

Well one day she came home from school with a cell phone cover that looked like a hoodie. And she had me open up the bottom so that she could slip it over her little hand. That was fun and cool but now we need different colors and more fun.

So I found someone on etsy that knitted and asked her to make us some sweaters for Haylee’s little hand. And I have to tell you it is such an awesome and fun way for Haylee to keep her little hand warm but super stylish.

If you have a little hand and want a sweater let me know and we would be happy to send you one too.

Just click on the contact form and send us an email.

Reflecting Back

Today I was thinking back to the day that I thought of Little Hand Big Heart.  I can remember sitting on my coach and all the sudden the phrase “Little Hand Big Heart” hit me like a ton of bricks.  I was actually so overwhelmed with that phrase that I started to cry.  Why… Because I knew it was God talking to me.  And I knew then what he wanted me to do.

God wanted me to share our story with the world.  He wanted us to make the world more aware of what Amniotic Band Syndrome was and how it has effected us.  But more than anything God wanted us to support others who have been effected by Amniotic Band Syndrome and to show everyone that even though Haylee has a limb dificiantcy that she still leads a normal life because we have raised her to know that just because she might be missing something  does not mean she can’t be just like everyone else.

I started this site on April 10th, 2008.  Can you believe it has been that long?  And I can’t tell you how many people we have spoke to since then.  How many families we have touched in one way or another.  How many people that have told us thanks to us sharing our stories and life they have realized that everything will be ok.

We are so happy to have helped all those we have helped so far and we plan helping more and more.

Our goal for this year is to think about writing a book about Haylee’s life so far, and also we would like to get our name out there more and maybe start talking to hospitals and things so that when mom’s are faced with ABS they know there are people out there that are in the same shoes as them and it will be ok.

What would you like to see out of us this year?

P.S. The image above is what Little Hand Big Heart looked like when it first started….

 

Sometimes She Does Not Need to Say a Word

There are times in Haylee’s life when she does not have to say a word to express her feelings.  Amniotic Band Syndrome has left me speechless a few times and so I am sure there are times when Haylee is also at a lost of words.

Haylee is beginning to get her own personalality and really just finally becoming her own person. So as she put her hand up I had to snap a picture and wonder what is she thinking.  Does she wonder if animals are also born with little paws?  Does she even really think about her little hand or is it just so normal and natural now that she does not even really remember half the time.

A little bit after this picture was taken we were walking and a little girl noticed her hand and ran over to her Dad and started asking questions.  The Dad tried to pull the little girl away.  And I watched as Haylee’s face went from a frown to a smile as she stode up straight and tall and walked over to the little girl and her Dad and said to the Dad. “It is ok.  I was born this way and if she wants to ask questions I would rather her do that than stare.”  My jaw hit the floor.  The Dad said. “I am so sorry.”  Haylee said, “Don’t be sorry, next time just let her ask.”  Haylee then went on to tell the little girl all about her little hand. It made me one proud Mama.

Sometimes we have to explain and other times we just have to be silent.

But please remember if your child sees something different on someone don’t let them stare.  We would rather you ask than stare.

Sometimes they just need to snuggle…

Amniotic Band has caused us to have lots of ups but we still do have a few downs.  Times when we just need to snuggle and remind our kids they are perfect no matter what other people say.  But there are also times when a word or a look can really hurt our kids feelings.

I have to admit Haylee has a pretty tough skin.  People can stare at her and make comments and normally it just bounces right off or she comments about it we talk about it and then it is done.  But there are other times when even the smallest thing really gets to her. Amniotic Band Syndrome make her skin as tough as it is because she does look different but that tough skin does not mean that her feelings don’t get hurt just like everyone elses.

I can normally tell when something is bothering her.  Either she will just come out and say what is on her mind or she ends up going into her own world.  And when she is in her own world I need to give her space until she is ready to snuggle.

One thing I have learned from Haylee is that sometimes she just needs to snuggle and pretend that she is normal like any other two handed child.  She knows that she has no fingers but sometimes in her own little world she pretends she does have two hands.

Recently her and I were talking about her little hand and she said to me, “Mom why do you wish you had a little hand?”  I said, “Because it is so cute and cool.”  She said, ” Mom I wish for just one day I could have two hands to see what it feels like to have two hands.  I don’t want it for every just one day.”  It broke my heart to hear her say that.  And that was a snuggle time when I knew that no matter what I said it did not matter that she just needed some extra love.

Don’t get me wrong these conversations are few and far between and half the time as soon as it comes out her mouth it is done but these conversations still come up and it is at that time that I have to just remind her that we love her just the way she is and that God made her that way for a reason.  A very special reason.

Halloween Fun with a Little Hand

Well as always Halloween was a great time.  Haylee has always loved Halloween because of the candy.   But she also loves it because it is the one time of the year where she can dress up and be anyone she wants to be.

This year she dressed up as a blood vampiress..  She was super cute and brought home a ton of candy.

Haylee has also adapted very well to carrying her trick or treat basket on her little hand so that she can get candy with her big hand.   The only little problem we had this year was her little hand got a little cold.

How was your Halloween?

Playing sports with a little hand

When Haylee was born missing fingers on her left hand due to ABS and if you would of asked me if she would of been playing sports I probably would of broke into tears and said no.  But I have been proven wrong over and over again.  Haylee plays sports and rocks at playing them.

We have ran into a couple sports that have made it difficult for Haylee such as softball, tee ball and volleyball.  I am a proud mom to say that Haylee has even tried those sports.  There is nothing she will not try once.

But besides that this girl rocks.  Her newest sport that she loves is soccer.  I know right.  No  hands how perfect is that.  But I was still scared the first time she went to practice with her team mates.  I was worried about what they would say to her or if they would tease her or now.  But never fear.  She jump in there and made friends super quick.  They kids looked at her hands and went about their business.   I even saw a few of them grab and hold her hand when they had to do something that dealt with running while holding hands.

When Haylee was younger I was very concerned on if she would ever play any sport but each and every day Haylee proves me wrong and washes all my fears away.

Sometimes missing fingers cause hurt feelings

Ok so our child was born different.  Ok so our child was born with a limb difference due to Amniotic Band Syndrome or whatever other reason might of caused our children to be different.  But does that give your children any right to be mean to my child?  We did not choose for our children to be born with a missing hand, or fingers, or arm, or leg, or nubs.  We did not choose for everyone to stare out our children and make them feel different.  But would we change anything about our children.. NEVER!

This weekend something happen that really pulled my heart strings.  It was a very hard situation but we made it through it.  We went camping like we do most weekends.  And Haylee decided to go play on the playground.  She was gone for about 10 minutes when she came back trying so hard not to cry.  Of course first look and I could tell something was wrong.  I asked her what was wrong and she said nothing.  I asked her again and she began to cry.

She said Mom they said I was scary and creepy.

THEY SAID WHAT???

WHO SAID THAT????

She said mom don’t go over there making a big deal out of it.  I told her that I will always stick up for her and have her back. She smiled.  She said they all gathered around her looking at her hand and then one child said something and it went from there.  She said it hurt her feelings and they would not play with her.

I explained to her that as much as we want to blame the children for what they say that often times it is not their fault because it is the parents that don’t explain to their children that every one is different one way or another and that just because someone is different does not make them scary or creepy…

I don’t understand how one child could say to another child you are scary and creepy.  How would they like it or react if my daughter told them the same thing.  They would be mad or hurt also… They would want to go have some words with my child if she said something like that to their child…. NO!

But I have to remember.  Haylee has been loaned to me from God because he has huge plans for her and I need to go the direction he points me.

SO I am sure you are wondering how things ended.  Well I told Haylee come on I am sure they just don’t understand.  Let’s go teach them.

So I went back with Haylee and when the first boy started to stare I said.  You know it really is not polite to stare but if you have a question we would be more than happy to answer your questions.  And let me tell you the questions started coming.  We answered all of them and by the time we were done playing Haylee had tons of new friends that were educated on how to react next time they see something different.

So as much as we want to over react and freak out sometimes we have to take a step back and look at the big picture first..

 

First Day of 5th Grade

I still look back to the day Haylee was born and all the worries I had with her having a upper limb deformity due to Amniotic Band Syndrome.  I worried about the kids teasing her because she had small nubbs on her little hand.  I worried about what she would not be able to do with only one hand.  Let’s just face it.  I worried about everything.

And here we are 10 years later and Haylee’s first day of 5th grade.  And Haylee is doing everything all the other kids in her class were doing.   Everything except Monkey Bars.  That one really still bothers her.  She wants to bad to be a monkey like all the other kids but with only five fingers to hold on it just is not happening.

Fifth grade is just the be beginning for us.  She is about to be a tween and that is when the fun begins.  But you know the awesome thing about her becoming a tween.  She is going to be an amazing tween that does anything the other kids do but with one hand instead of two.

Fifth grade is when we start worrying more about our hair and outfit.  Firth grade is the year before we get into middle school.  Fifth grade is someone what of a mile stone.  It is when you little princess turns into a tween and begins to really shed her wings and grow into something amazing.

So here is to our first day of 5th grade.

 

All Wrapped Up Wordless Wednesday