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Sometimes She Does Not Need to Say a Word

January 9, 2012 By 2 Comments

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.

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Sometimes missing fingers cause hurt feelings

August 30, 2011 By 3 Comments

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..

 

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Standing out in the crowd with Amniotic Band Syndrome

August 21, 2011 By 2 Comments

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.

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Haylee Speaks Out About ABS

August 19, 2011 By 2 Comments

Haylee has a message to all ABS children and their parents. Something you want to watch. This is Haylee’s first video of many to come.  Haylee did the recording, script and editing all by herself… Hope you love it.

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How other children react to a little hand

December 9, 2009 By 2 Comments

SS850008Amniotic Band Syndrome effects everyone a little different.  Not every child will have a little hand. Not every child will have nubbs. Not every child will even have their hands effected.  Some will have their feet effected.  Some will loose their whole or half arm or leg. But, no matter how they are effect there will be something that makes them look different.

The average adult will look, wonder what is wrong or how they got that way but never ask.  But not those sweet young children.  They will walk right up, touch it, feel it and ask why don’t you have fingers? What Happen?

We ran into the most precious thing this last Sunday.  We were at church and during service the minister called all the children up for Children’s sermon.  All the children went up and sat down. Haylee sat down on the steps and a young boy, probably about 2 maybe three, came and sat down next to Haylee.

At first he did not notice her hand.  Which actually happens alot.  But then after a couple minutes Haylee moved her hands around and he noticed.  Be began to hold her hand.  Touch her fingers and just softly play with her hand.

Haylee is a very patient person and a very kind and compationate person.  He let the little boy look touch and feel her little hand.  The whole time he was doing this Haylee did not frown or get upset.  Instead she sat up there with the biggest smile you had ever seen.

It brought tears to my eyes to see not only this young courious boy up there checking things out but to also see Haylee up there not being upset but rather letting the boy explore and figure things out.

I signed to Haylee good job.  I wanted her to know right then and there just how proud I was of her and what an awesome job she was doing.

We don’t mind if you ask us what happen.  Actually we prefer it over staring.  We want to tell everyone about ABS and how it has not only effected us but how it has blessed our lives and  made us the people we are today.

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Keeping it Warm

November 6, 2009 By 2 Comments

SS850286With the weather starting to get cold we have some extra worries. Worries about how we are going to keep Haylee’s little hand and nubbs warm. Because Amniotic Band Syndrome has effected Haylee’s little hand, wrist, and fingers it also has made it hard to find a pair of gloves that fit. But we don’t just struggle with finding gloves that fit. We also struggle with keeping that little hand warm.

The first issue we have is that because Haylee has no fingers (only nubs) on her little hand then we have an issue with circulation to her little hand. Because we have an issue with circulation we have to watch that we keep that little hand extra warm. Her little hand turns blue very easy and very fast if it is not kept warm. As Haylee has grown up we have taught her to keep an eye on her little hand and if it starts to turn blue the first things she needs to do is put it under her clothing in her arm pit to warm it up fast. And Haylee has done very good about knowing when her little hand is getting too cold and does exactly what we have showed her to do.

The other issue we have is finding gloves for her little hand. It is very hard to find gloves for both hands and normally we have to buy two pair. But before we put on her glove we have socks that people (including us when Haylee had flower) us for prostisis. She wears that a lot. Sometimes she wears it under her gloves sometimes she just wears it when she feels her little hand getting cold. I noticed her recently that she has been carrying those socks in her backpack so that if her little hand gets cold at school.

My little girl is growing up more and more each day.

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What a Summer

September 16, 2009 By Leave a Comment

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Nubbin’s

September 1, 2009 By 2 Comments

Haylee has Nubs. Nubs are just one form of ABS. Nubs happen when the growth of fingers is stopped at an early stage of development. Some children have small nubs like Haylee and other children have longer nubs.

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Tie My Shoes????

August 18, 2009 By 1 Comment

shoe-tieSo how old where you when you learned to tie your shoes?  I don’t remember how old I was but I know I was not yet in school.  But now I have a better question for you and I want you to go try it.  Go try and tie your shoes with one hand.  HA HA HA.  Got you.  Much harder done then said right.  Well I was over reading My Best Friend’s blog and her son Bug is  also struggles tying his shoes.

So just because we have one hand, two hands or no hands does not mean we can all tie shoes the same.  Nan did an amazing blog post with a video that I want to share with you.

Sometimes things can be so difficult for little Bug.  We’ve tried for months to teach little Bug how to lace a shoe with a cardboard cutout, lacing cards even tennis shoes but with no luck.  This summer Bug took OT and his instructor loaned us a teaching tool that made all the difference in the world. He learned to lace his shoe in 3 days. Yes, can you believe it, 3 days! I was blown away and he was so proud of himself.  We are still working on the bow tying but we got half of it down so we are both so proud.  Just look at him go.

That is just a snippet.  If you want to read the whole thing and watch Bug tie his shoes and My BFF help her son then head on over to A Mom Blog and check it out.  She even gives the link to that amazing shoe that helped Bug learn to tie his shoes.  OH and….

WAY TO GO BUG!  WE ARE SUPER PROUD OF YOU.

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Making Things Work

July 24, 2009 By 4 Comments

ss850020Since the day that Haylee is born we have figure out how to make things work with just five fingers. Sounds simple enough right? You think how hard can it be to do with one hand? But, have you tried to tie your shoes with one hand? Have you tried to zip your coat with one hand? How about pick up that quarter laying on the ground not using your fingers?

We think about those things. We do a lot of trial and error in our house. We think about everything we do first with two hands and then we figure out how we can do this with just one hand. If we can’t figure it out then we go to the internet or our wonderful friend Darin to see if there are other ways to do it. Have you ever sat down and really thought cutting up your meat with just one hand?

Today Haylee and I were making a cake and it required eggs. So I assigned Haylee getting the eggs out of the fridge. I watched carefully just to see how she was going to handle holding eggs and climbing back out of the fridge. (We own a fridge that has the freezer on the bottom so many times you will find Haylee in the fridge literally) Haylee pulled the egg out of the carton and cradled it in the nook of her elbow of her little hand. It was the cutest thing and brought tears to my eyes.

I thought my daughter is going to be perfect. She is going to do anything anyone else in the world does but with one hand. She will cook and clean and work and get married and have children. That is a dream every mom has for her kids. And it is the same dream I have for my little hand big heart daughter.

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