Amniotic Band Syndrome is all about the attitude

Amniotic Band Syndrome can drain a person if you don’t have the right knowledge and attitude about it. We have had a lot of people ask us how we are so positive about Haylee being born without fingers due to Amniotic Band Syndrome.  And there is only one answer.  It all starts Faith and knowledge.

When Haylee was first born and I had found out that the cause of her little hand was due to Amniotic Band Syndrome I was a wreck, emotionally, physically, mentally and spiritually.  The first thing that would of helped was if the hospital would of been able to give us some knowledge or information about ABS. But nothing.  So I prayed.  I prayed that God would show me the way and guide me to knowledge and support.

Since that day I have been filled with knowledge about ABS, I have been overwhelmed with new friends that have children or are themselves effected by ABS.  God did show me the way and has been helping us make people aware of Amniotic Band Syndrome one little hand at a time..

We are very positive and upbeat with Haylee about her ABS and I share all information possible with Haylee about ABS, about this site and about people that contact us due to Amniotic Band Syndrome.  But there are still day where having a little hand totally drains her.  There are days that she is so frustrated that she wants to scream.  And there are days that she does scream about it.  But then we sit down and talk about it.  We talk about what we can do to make things better.  How we can fix whatever has made her so upset.  And that God has made her special for a reason.  Not to get upset over it but to share our frustrations and accomplishments with the world so others with Little hands, no hands, club feet, missing limbs can learn from us and try what works best for us.

So yah some days dealing with Amniotic Band Syndrome and it’s many effects can be a total bummer, it can drain person to no extent.  We still always remain positive, figure out what can make Haylee’s life a little easier and keep loving God and keep supporting our little angel.

Family Fun in the Pool ~ Wordless Wednesday

Why do I always lose?

I am busy working away in the office today with Haylee laying behind me playing a game on her DS.  Every time she would win she would come up and tell me all about how she had won and would be super Happy about it.  But then I heard the words, “How do I keep losing?”  How many of us as adults have asked ourselves that a million times.

That being a hard question for an adult to explain to another adult imagine trying to explain it to your 8 year old.  Yah you can say life is not always fair and you don’t always win. Or you can say we all lose things in our lives at one time or another. Or you could… Well you get the picture.

But how frustrating it must be to think that you always lose.  That made me think about when Haylee was born and I found out that she has been effected by ABS.  I am sure somewhere in my mind I thought.  How come I always lose?  What did I do to get the bad cards?  All those emotions going through you head. Was it your fault, did you cause this, is God mad at you? There are a million different questions you ask yourself and a million different feelings you are feeling.

But really did you lose… Heck no.. You won.  You won a precious gift that only a select few are given from God.  So the next time you child says why do I always lose try turning that losing situation into a total wining situation. We need to teach them to be able to get over that feeling and go on.  Not to l that feeling drag on and on and get them in the total dumps.  Imagine what would of happened if I would of keep thinking negative about my sweet Haylee.

Family Talk Interview About Amniotic Band Syndrome

We were interviewed today by Dr. Daisy Sutherland. Daisy wanted to know all about ABS and how she could help.

Listen to internet radio with FamilyTalk on Blog Talk Radio

Amniotic Band Syndrome ~ So little Information

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.

Haylee Dancing with Sick of Sarah

Haylee is dancing with Sick of Sarah

Sad Little Monkey

I received the saddest call tonight.  My little Haylee is spending a month with her Aunt and Uncle and cousins.  And she has been gone for a little less then a week now and tonight she called me to tell me good night and she loves me.  Just like we do every night before she goes to bed.  Then I talked to my sister in law for a while and everything was fine.

I came down to the office to get some more things done and could hear the home phone ringing off the hook.  Normally I don’t answer it.. (yah yah)  But I text my SIL and asked if it was her calling.  She said it is a Sad little Haylee.

SO Haylee called me and was crying.  I MISS YOU MOM.  Oh it was so hard not to cry myself.  I miss the girl like crazy.  We spend so much time together.  Since Dad works second it is just Haylee and I at night so we pretty much do everything together.  And now she is on the other end of the phone telling me how much she loves me and misses me and wants to come home… OH JUST STOP.. I wanted to jump in the car and drive down to get her.

But I help my cool and did not cry.  I could hear in her voice just how tired she was.  So I told her if she still felt that way on Friday, Mom and Dad would come and get her Saturday.  But I can almost promise you that things will change and she will not be ready to come home.

It just tears at my heart strings to hear my  baby cry and not be there to hold her in my arms and make the tears go away.

Family History ~ 7 generation

Darin’s True Colors

Darin Sargent is an amazing friend of the family and I have to say that he is what inspires Haylee each and every day. I wanted to share this video with you of Darin on the NEWS!!

Way to go Darin…. You rock!

Rainy Days What to Do

The last couple days it has been raining like crazy. With all this rain we have been stuck inside.  And who wants to be stuck inside when we are out of school for the summer.  I can tell you no one in this house wants to be stuck inside.  We would all rather be outside riding our bikes, jumping on the trampline, helping Dad work on things, working in the yard or garden, visiting the zoo.  You get the picture.  But what do we do when we are stuck inside.. Below is a list of things Haylee and I do when we are stuck inside.

  • Play board games
  • Play hide and seek
  • Do arts and crafts
  • Play webkinz
  • Play Club Penguin
  • Play Super Mario Bros. on the Wii
  • Read Books
  • Make up plays
  • Sing and Dance around the house
  • Take naps (my favorite when it is raining)

That is just some of the things we do.  Below is also a list of some great sites that have things to do when it is raining outside.

We would love to hear what you do when it is a rainy day.