Haylee hangs out with her favorite rock star Abisha, Lead singer of Sick of Sarah
Amniotic Band Syndrome is all about the attitude
July 22, 2010 By 2 Comments
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.
4th of July Facts, Fun and Safety
July 2, 2010 By 1 Comment
Happy 4th of July…
This is probably one of our favorite holidays because you can have fun, remember how lucky we are to have independence and we always have a huge bash. So this year we were on the look out for some fun sheets and facts we could share with you about independence day and about how to be safe this holiday weekend. Below are links to some sweet places with tons of great information on being safe this holiday weekend but having fun.
Family Talk Interview About Amniotic Band Syndrome
June 30, 2010 By 1 Comment
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
Kids Helping Kids – Generation Cures: Zebrafish Giveaway
June 29, 2010 By 7 Comments
Every child can make a difference in the lives of others. You may not have ever heard of Generation Cures until now but I think it’s a very important website you should see and share with your children. It’s all about teaching and empowering our kids to give back. Generation Cures was founded in May 2008 by Children’s Hospital Boston, and it inspires kids to help cure other kids via hospital fundraising programs, local fundraising activities, and digital media. It empowers kids to believe they can make a difference in the lives of others and to do what they can to help find cures to the most debilitating childhood diseases. It’s also an award winning site: “Website of the Year” by Mom’s Choice Awards, “Kid Zui Seal” from leading kids’ web browser KidZui (given by a review board of 200 plus teachers and parents as well as Gold Davey Awards for creative excellence and out of the box thinking and a Parents Choice Awards in the Fall of 2009.
By visiting their website at Generation Cures you can certainly see fine examples of young people who have taken that belief and are making it a reality, changing the lives of sick children, giving hope that research they helped fund will someday find a cure.
In just visiting the site myself I learned of Rachel, a youth who at 14 was diagnosed with a rare brain tumor who is giving back in an amazing way – $10,000 to cancer research. I learned about the Zebrafish and its importance in the study and research of disease. There are special areas set up For Kids, For Teens, For Parents and For Teachers, webisodes, online games – all in a safe online place to learn, play. For teachers there are lessons and activities that work in conjunction with the webisodes. What a wonderful resource for teachers to teacher character development, social responsibility and how to give back to the community along with math and science concepts.
Zebrafish, (published by Simon & Schuster and endorsed by the Junior Library Guild and American Library Association-for kids in middle grade) is an extension of the Generation Cures animated series Zebrafish, which as I learned is a small, transparent fish used for studying disease, and tells the story of five friends who form a rock band who use their music to make a difference in the world and encourages kids everywhere to do the same.
If you’d like more information on Generation Cures please visit their website at GenerationCures.org , like them on facebook or follow them on Twitter.
Little Hand Big Heart will be giving away a copy of Zebrafish to you, one of our readers courtesy of Generation Cures.
To be entered to win simply leave a comment below.
Disclosure: The giveaway item will be provided free of charge for the giveaway as well as the complimentary copy I will receive. No monetary exchange took place.
Peas In a Pod
June 26, 2010 By Leave a Comment
Seriously how cute are these four? Family and friend is what they are. Cousins for life friends forever. It is so nice to see how much they love each other, stick up for each other and protect each other. Family is very important part of of who we are and what we are about. Family makes it all better no matter what it is.
I hope that your kids growing up loving and knowing their cousins, aunts, uncles and family as much as ours do.
Sad Little Monkey
June 10, 2010 By 2 Comments
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.
Rainy Days What to Do
June 8, 2010 By Leave a Comment
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.
- http://fun.familyeducation.com/crafts/games/32870.html
- http://www.redshift.com/~bonajo/bored.htm
- http://dnr.wi.gov/eek/cool/rainyday.htm
- http://www.chiff.com/summer/rainy-day-ideas.htm
- http://www.teachingk-8.com/archives/keeping_fit/rainy_day_exercises_by_jeffrey_crupi.html
We would love to hear what you do when it is a rainy day.
Everyone Needs Someone
April 19, 2010 By 1 Comment
No matter who you are or what you do you need someone. Someone to talk to when you are sad. Someone to share the most amazing news in the world with. Someone to play with. Someone to hand out with. Just someone.
Haylee has been very blessed since the day she was born to have that someone. Someone besides Mom, Dad, Aunt, Uncle. Someone her own age that knows and thinks the same way she does. She has her best friend in the whole world. Her cousin Tiki.
Tiki and Haylee are 6 months apart and have been the best of friends and the best of playmates since really before Haylee was born. When Tiki was just a wee little thing I used to sit her on my belly and rock her to sleep as Haylee kicked her in the back. Tiki would fall asleep every single time. And they have had each others back since then.
They don’t live super close to us like they used to and after a few months you can really start to tell the Haylee is missing Tiki and just needs some Tiki and Haylee time. And usually about that time we head down to where they live or they end up here for a visit.
I have to say that I could not be more pleased that Haylee is so blessed to have Tiki in her life and share her ups and downs with her.
Can you give me a hand?
November 23, 2009 By 5 Comments
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.
