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.
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.
Amniotic 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.
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.