Can you give me a hand?

Haylee has blessed my life for over eight years now. Eight years of wonderful memories, great smiles and lots of hugs and kisses. For over eight years we have lived with five fingers and five nubbs. We have been asked what Amniotic Band Syndrome is more times then I could even begin to count. ABS is a part of our daily life since the day Haylee was born. But there are still times I forget that Haylee only has nubbs on her left hand.

I know what you are thinking how could I forget my daughter was born with only five fingers. Well there are many different reasons why I forget. First and most important is that Haylee has adapted in ways that you could not imagine. She does anything and everything I can do but with one hand.

The second reason that I forget so much is because we don’t make an issue of Haylee only having five fingers. The less issue you make of things the less issue it really is. We don’t hid it, be ashamed of it or care what others think of it. Haylee is perfect in our eyes and does not have a disability. I believe that if you make a huge issue of the disablity then your child will also make a huge issue of it also.

Next time you ask for a hand, remember it does not matter if it is a big hand or a little hand. It is the body, mind and spirit that is connected to that hand that matters the most.

Keeping it Warm

With 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.

Little Devil…..

This Halloween Haylee decided she was going to be a little devil.  When I asked her how come she wanted to be a little devil she said because mom, I am an angel every day and have to be something different for Halloween.  The things 8 year old’s think of.

When she was little I always worried about how she would handle being around so many other kids with a small hand due to Amniotic Band Syndrome.  But I have learned if you don’t make a issue out of it then Haylee does not make an issue out of it.

As you can see in the picture Haylee had a long weekend of Trick-or-Treating.  Friday night we were invited by the Shriners to an awesome Halloween Party.  They had tons of great games stations and Haylee just had an amazing time. It was nice that she got to talk to some of the different Shriner members and her favorite part was talking with a Shriner named Doug.

On Saturday we went to a few local friends houses then off to Hy-vee Halloween maze that had 35 different businesses handing out candy, sodas, ice cream, hotdogs, and tons of other great stuff.  Haylee had a great time and there were tons of people there.  After that we headed to Gateway mall to do some trick-or-treating.  Last year we went and Haylee came home with tons of candy.  This year we went and Haylee said she was ready to go after walking by about 15 stores and only 1/3 of those stores were handing out candy.  So we left and went off to Parkers for some good BBQ food.  Haylee’s Daddy loves BBQ and so Haylee and I decided to treat him for Halloween night.

On observation I did notice is how well Haylee adjusted to holding the trick-or-treat bag with her little hand and taking candy with her big hand.  The little things that she figures out to make things work.

10 Things I learned from My Daughter

When Haylee was born I struggled with so many questions. How will I raise my daughter who was born with no figures? What exactly is Amniotic Band Syndrome? How did the Amniotic Band? Does anyone else in the world have children like this? And on and on and on. But you know what those questions don’t matter. None of them. All that matters is Haylee. I have learned more from Haylee then I have ever learned in all 27 years of my life before Haylee came into it. I just wanted to share with you 10 things I learned from Haylee. Although 10 is not many they are very important lessons I have learned.

1. Miracles Happen Everyday ~ Everyday I stand in total amazement that God could hand me such a precious gift. A gift I was told I could never have. After my oldest daughter was born I was told I could not have any more kids. And then God provided my sweet, special, Haylee
2. You can put toothpaste on your toothbrush with only one hand ~ Yes this may make you laugh but next time you go to put toothpaste on your toothpaste try it with one hand
3. Amniotic Band Syndrome is not a handicap ~ having only five fingers does not slow her down and it is just normal to her. So we all need to look at it as normal. Not a handicap but a blessing.
4. Can’t is not longer in our dictionary ~ There is nothing Haylee can’t do. And I mean Nothing. She may do things slower but she still does them.. And she does them with only one hand instead of two.
5. We Are Many ~ There are more people out in the world effected by Amniotic Band Syndrome then you would ever imagine. And once we meet each other we become instant family with a close common bond.
6. Sometimes You Just Don’t Want to Talk About it ~ There are times when someone asks Haylee what happened. And there are times when she just does not want to talk about it. She has told the story so many times that she just has nothing more to say. Don’t push them to say it or make them tell someone. Just tell their story and go on, but don’t make a big deal out of it.
7. A little bit goes a long way ~ You don’t have to have much to make a lot. There are days when Haylee and I can take nothing and make the whole world revolve around us. Haylee does not let only have five fingers slow her down at all. She can play, imagine and have fun like anyone else.
8. The Outside does not matter, it is what is on the inside that Matters ~ Haylee does not care what people think of her little hand. She does not care if you are in a wheelchair, have no hands or legs, she does not care what you look like, she will approach you and talk to you no matter what your looks are. All she cares about is how nice you are, how you treat her and how you treat her family and friends.
9. Love ~ I just can’t explain the love that Haylee has taught me to feel. It is a love that is so special so unique so amazing that ………… I don’t even know how to explain it.
10. IT WILL ALL TURN OUT JUST FINE!!!!!!!!!!!

Precious Girls Club Review and Giveaway

Little Hand Big Heart and Mom Select have an awesome giveaway. We were selected to be one of the lucky ones that got to review the Precious Girls Club Book Operation Kindness. Haylee and I choose to read a chapter a night until we finished the book and I have to tell you this is one of the best books I have ever read with Haylee.

Katie Bennett and the Precious Girls Club want to make some sad sick kids at the Shine Community Hospital happy. And the only way they can think to do that is by putting on a puppet show but something is stopping them. Mr. Boxer! Mr Boxer is the president of the hospital and he refuses to say yes.

Katie and her friends learn some important lessons along the way not only from another club member but also from Katie’s gaurdian angel Faith.This is a book you and your little ones will not want to put down until you find out just how the girls do on Operation Kindness.

So one luck winner will win the book Operation kindness and will also win a mini plush paws dog and even better you are going to get access to the companion website. www.preciousgirlsclub.com.

All you have to do to enter is leave a comment on who you would give the book and the plush dog to.

To receive extra entries:

• follow me on twitter and leave a comment
• Tweet about this giveaway

Plus everyone that enters will also receive a special web access code so that your precious little one can go and join the Precious Girls Club once the giveaway is all done. (I have to say my 7 year old loves the Precious Girls Club Website and there are so many great lessons that involve God!)

Giveaway Ends September 9th at 12 PM CST.

Tie My Shoes????

So 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.

Making Things Work

Since 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.

A Little Hand, but a Big Heart

You know we all say great and wonderful things about our kids but I have to take a minute to brag about mine.  Haylee as most of you know was born with a little hand but has a heart of gold.  I often wonder just how big her heart truly is.  God truly sent me an angel from above.

We are setting up a store for Little Hand Big Heart.  Here is a sneak peek of what we have so far.  http://www.cafepress.com/lhbh .  Haylee decided that half of everything she is going to make is going to go to Shriners.  I mean seriously, this little one of mine is 7 years old and she is donating half of everything she makes back to a wonderful resource.  So I asked her what she was going to do with the other half.  Well that lead to a great call with a wonderful person who suggested a vision board.

Haylee and I created the vision board and are only about half done with it but everything on her vision board is about giving back.  She wants to Meet Darin (Darin, You were top of her list), she wants to take her uncle Dave snorkeling, she wants to write a book, she wants to make gift baskets and send them to any moms that are pregnant or have newborns that were effected with Amniotic Band Syndrome, she wants to travel the world and speak to people about living with a little hand.  And this is only half of all the things she wants to do.

Can you believe a little girl can have such a big heart?

Sometimes I Forget

Now that Haylee is seven and we have been living with Haylee’s little hand and her limb deficiency due to Amniotic Band Syndrome I sometimes forget that my daughter is not like  other kids. I forget that there are only five fingers and not ten.  Now before you think I am strange you need to hear me out.

When Haylee was first born and they that my daughter had a little hand, I had no idea what they were talking about and the first time I heard the words Amniotic Band Syndrome I was like what?!?!  All I could think about was how my daughter was missing five fingers.  But the very second I seen Haylee for the first time.  I forgot about it all.  All I could see was the most perfect baby in the world.  There she was with toes and fingers (notice I did not say 10 toes or 10 fingers, you don’t have to have fingers, toes, arms or legs for that matter to be perfect in my eyes or in Gods eyes) and a smile that lite up the room.  Yah I know it was just gas but it was still beautiful.

As time went on with Haylee I started to instead of feeling sorry for us I started on ok what do I need to do to adapt to this situation.  Obviously God gave me this wonderful gift from Heaven so adapt.  I began figuring out how I could get her to hold things in that hand.  How I could get her to shake a rattle in that hand.  I began figuring all this out.

But as the years pass she has adapted so well that I often forget that Haylee was born with out fingers on her left hand.  I forget she has that little hand.  I forget that it was an amniotic band that caused her nubbs.  I forget in a wonderful way because just like you and I do, Haylee adapts to situations also.

Weekly Devotional ~ April 26, 2009

And he said unto them, Go ye into all the world, and preach the gospel to every creature.
- Mark 16:15

These words were spoken by Jesus before he ascended into heaven. Although it is not always easy to share the good news of Jesus with everyone, it is what Jesus commanded. This is his Great Commission.

One of the best ways to share the news of Jesus is by the example of our lives. If you are walking around miserably, showing others that things are not going your way, or complaining about everything, then your “gospel” – your sharing of the good news – is limited. Alternatively, if you are joyful and are looking for the good in all things, even in the face of sadness and difficult times, then you will have a better way to reach others about Jesus. When you are joyful and positive, people may desire to find out why you are that way even in bad times. When they eventually find out it is because you have Jesus, they may decide they want to find him too.

We all have someone we know that does not know Jesus yet. We may have even tried to talk to this person about Jesus but have been brushed off or otherwise told that they are not interested. Although that person may not have accepted Jesus on that day, a seed still was planted. Don’t think that what you shared fell on deaf ears. It was heard, even if it was not accepted on that day. Keep praying for that person (or people). The seed that God allowed you to plant in their hearts may one day be what helps them find Jesus.

Dear Father,
Thank you that we live in a place where we can freely talk about Jesus. Thank you that we have this freedom. Please help us to focus on the joy that you have given each of us. Help us to find the positive things in our lives. Help us to reach others with your good news. Help them to want to know Jesus too. For those we have told about Jesus, help the seed of truth to blossom in their hearts so that they can seek and know you better.
In Jesus’ Name,
Amen 

 

About the author:    Alicia H. Tucker is a homeschool mom of three, after having taught in public schools for over ten years. She has a bachelor’s degree in Elementary Education and a master’s degree in Education with a focus on Curriculum and Technology. She is a freelance writer and is currently working on writing her first book.

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