Another First…

photoI can’t believe that just 11 short years ago I was worried about Haylee living a normal life, having friend, doing things the other kids were doing.  And here we are 11 years later and Haylee has attended her first school dance. 

I still think back to the day when she was born and I was told she had no fingers on her little hand.  I remember thinking that day.  Would Haylee be invited to school dances, would anyone want to go to a school dance with her because she is different.  I remember wondering what was Amniotic Band Syndrome and how was it going to effect Haylee’s life.

People look at her now and ask me why were you ever worried.

That is an easy question to answer.

I was worried because I did not know ANYONE else that had been effected by ABS.

I did not have anyone to ask the million and one questions I had running around my head at the time.

Instead I assumed the worst when I could not find anything online except for negative.

But Haylee has amazing me beyond words, she is more than I ever imagined and has accomplished more than most kids her age has.  And the best part.  She has done it all with one hand.

Oh and the school dance went awesome and she had an amazing time.  And told us that she did not kiss any boys…..

 

First Day of Six Grade

I can’t believe where time has gone.

It seems like just yesterday she was born and now we are getting ready for middle school next year.

Haylee started the 6th grade just a few days ago.

She made sure she started out the year right with a new outfit, a new haircut and rocking shoes.

She really loves the school she is in and also seems to really enjoy riding the bus.

She has decided she will be playing the bass drum this year in band and is super excited about that because she said she is going to be like her cousin Jessica who is in a band.

She of course can’t wait to get to Jr. High but what child does not want to grow up.

I am super proud of everything Haylee has done in her life already and super excited about all the adventures that are to come in Haylee’s future.

 

Impossible? Not!

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.

Live Like No One Is Watching!!!!

I have to share this amazing video with you.

I belong to FTR Nation and they posted this video recently. And this video explains exactly what we have taught Haylee since she was very young.

With Haylee being born with no fingers on her left hand she always seems to have all eyes on her. And from a very young age we have taught her to live life like you dance. LIKE NO ONE IS WATCHING! And I will be honest. It has sure made her life more positive and upbeat. Haylee watched this video last night!  And Loved it!  Haylee was so mezmerized by the whole video but more importantly Carrie Dancing.  Haylee just zones on her dancing and said, “Mom I live my life like Carrie dances, like no one is watching.”  That brought tears to my eyes.  Thank you FTR Nation for affirming that this is how Haylee should continue to live! Love you guys!

Brave ~ Haylee can’t wait!

Haylee has been talking about this movie since she heard it was coming out.  Haylee can’t wait to see it and wanted to share with you the trailer and some images she thought was super cool.

You can also check out Disney Pixar’s facebook page here:

https://www.facebook.com/DisneyPixar

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.