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….

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.

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.

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.

Amniotic band syndrome makes our kids stand out in a crowd.  Even if they have been effected so very little that no one even notices they still stand out in a crowd from all the other kids. ABS effects each child differently.  Physically and emotionally.

As most of you probably know we moved to a new town about 7 months ago and although Haylee did to go to school here for half a year she still has not made tons of friends and to be honest Jim and I have not made too many friends either.

So today I noticed as we were standing in line at a buffet Haylee began to hid her hand and cover it up.  This confused me and puzzled me for a minute until we were able to get to the table and talk about it.  I asked Haylee why are you hiding your hand?  She said everyone was staring at me.  I said no sweetie.  This is a small town and our whole family is new.  They were staring at Mom and Dad way more than you trying to figure out who we were and what we were doing there.   You know how small towns are.  She smiled right away and said oh yah I forget and the little hand came back out.

But I have to also remember that Haylee is going to be 10 years old soon and has become more worried about her appearance and what people think of her and also has become worried about fitting in and making friends.  She is worried about standing out in the crowd since she has a little hand and no one else around here does.

I often times sort of forget about Haylee’s hand because it is so normal to me and I have to remember that she is different and she needs those extra special hugs and kisses to reassure her that everything is ok and that she is going to have the most amazing life imaginable.

So as our children grow older we have to continue to talk to them.  Tell them how special and important they are.  Tell the that standing out in a crowd is not always a bad thing but also a good thing too.  Remind them that they are beautifully made and that God has huge plans for them.

When Haylee was born with no fingers on her left hand due to Amniotic Band Syndrome one of my first thoughts was will Haylee be able to do all the things that other kids with two hands do?   And since that day that I had thought thought God and Haylee just amazing me more and more every single day.

A couple weeks ago Haylee had a chance to go to summer camp with her cousin.  And yes the Mom I am, I was a little concerned about what the other kids would say to her or how they would treat her.   And you know what.  There was no reason at all for me to be concerned.

First on the way to drop her off I reminded her that remember God made you with a little hand for a reason, and I went through the whole spill about how if people say something to her to not let it hurt her feelings too much because they just don’t understand and maybe have never seen something like that.  And I went on and on and honestly I think she was probably like… Yah, yah mom whatever..

But when she came home and told me about the amazing time she had swimming, acting, singing, playing in a mud pit and praying.  And I was the happiest Mom in the world.

We as parents always worry about our children getting their feelings hurt when it comes to other kids staring and saying things.  But with that being said we have raised Haylee that she is just as normal as anyone else is out there.

One of the questions I asked Haylee when she got home was, “Was there anyone else with a hand or arm like yours?”  and her answer was NOPE! And it was so cool Mom we did this and this and this.  And just went right on telling me all about her camp.  So she has just showed me that all my hard work of not making a big deal out of her little hand has paid off because her little hand is now not a big deal to her at all.

So the next time you wonder if your child can or can’t do something because of their little hand or nubs remember.   They can do anything we can do but better because they do it with one hand, or one leg, or no fingers.

Once we become amniotic band moms, dads, or family members our lives change.  Amniotic Bands did more than just effect our children.  These band brought us to a whole new extended family.

Remember when you first found out about ABS?   Remember feeling all alone?   Well once you realize that everything is going to be ok and find that there is a support system out there for not only our children effect by Amniotic Bands but also their families a whole new sense of things will be ok comes over you.  Realizing there is support for ABS makes you relax a little and also eases your mind knowing there is someone out there that can answer questions when you have them.

Finding out our children have been effected by  Amniotic Bands does not have to be a scary thing.  The more awareness we can bring to abs the less people are going to be scared when they find out there children are going to be effected by Amniotic Bands.

So let’s make this world aware of Amniotic Band Syndrome one child at a time.   Let’s support each other and shout from the roof tops.  ABS is not scary because we are here to support you.

Have you ever searched for the phrase Amniotic Bands Photos?  Sometimes you will get some very beautiful pictures of children.  But other times you get the exact opposite.

Now imagine being a pregnant mom and just found out that your child will be deformed or effected due to amniotic bands.  You begin searching for photos of what you child might look like.  And you find all those scary photos.

We, as Amniotic Band Syndrome parents, don’t want that!  We want people to find beautiful amazing pictures of our children.  We want those soon to be parents to see just how beautiful, amazing, gorgeous, and perfect their children will be even if they are affected by amniotic bands.

Below are just a few Amniotic Bands photos we want to share with you and populate the world with when searching for Amniotic Bands Photos.

When my daughter was born missing fingers due to amniotic bands I did not see it as a blessing.  I seen my daughters deformity and blamed myself.  I felt sorry for my daughter, I felt I was the cause of it.

I know better than anyone when you first find out your child will be or is born deformed due to amniotic bands, can do nothing more than think why. Why my child? Why me? Why, Why, Why?  Or if you were like me your next thought after why was, what caused this and could I have done something different.

For a long time that was all I could focus on.

Amniotic bands

I had to learn anything and everything I could about amniotic bands:

• what they are
• what causes them
• what could I have done differently
• will my next child be born with them
• how bad are the effect
• on and on and on

I searched for hours and days on the Internet trying to find out anything and everything on my daughters deformity.

But quickly my focus changed as I grew more and more in love with my five fingered daughter.  Amniotic bands may have taken my daughters five fingers but in their place God filled my life with many blessings.

Amniotic bands with Gods help gave me the most strong, amazing, beautiful daughter anyone could ever imagine.  And each day I count my million blessings.

Amniotic band syndrome affects 1 in 1,200 live births. And it is said to cause  178 in 10,000 miscarriages. And over half will involve the hands, fingers and club foot.  But if you begin to try and dig deeper and find out more  about Amniotic Band Syndrome there is nothing.  We don’t know how many people effected with ABS go on to College and have families.  We don’t know much of anything except for the hard facts.

This breaks my heart to know that there are so many people out there in the world that are effect by Amniotic Band Syndrome and there is really no where to turn.  No support system.  No community of people.  Nothing like that.

It is time to make a change.  It is time to make the world aware of Amniotic Band Syndrome but more importantly it is time to give these Moms, Dads, Families and Friends a place to go to get support.  So that they no longer feel alone  in the world.  WE are not alone.  We are many.. Many more then you would ever imagine.