Truly, I'm just the regular person next door who has all kinds of my own faults - I'm not a perfect person sitting on a pedestal. God has provided us with a variety of people to help us. He has provided for Ben's every need, often before we even knew he was going to have that need! I have cried my tears, and stomped my feet, and made a real pest of myself to doctors and teachers and the whole special education department in our school district. We have had to adjust our lives, to slow down and to truly trust the Lord. I've had to learn what is truly important in life, and Ben has been my teacher. You have all been so kind, but I"m just not THAT amazing. Any one of you, given a gift and a challenge like we have been given would do exactly the same thing. I know it's hard to believe, but it's true. Each of you possess a God-given strength inside that you experience throughout your lives in a variety of different times. I bet you've felt it already. Think about the times when you have had to really work extra hard to achieve a goal, or to survive a catastrophe, a natural disaster, a divorce, a death of a loved one, financial disaster, to fight for a cause, a friend in crisis when you have been the one who has risen to be the only one who really could help. There are lots of challenges you have survived that are much harder than raising a child with special needs. Losing a child would be much harder, I think. Women are strong: we help each other. We pray for each other. God gives us the strength to get back up and keep on trying, even when we think we can't do it again. Every day He gives us new strength.

Jan I have been so busy that when I saw your post about Ben's Birthday I skipped over it. I have now taken the time to read it and I disagree, you are a very special person. When I first started nursing in 1987 there were institution where people like Ben where were placed by their families and pretty much forgotten about. So believe me when I tell you, not everyone would have done the great job you have done with Ben. You should certainly write a book. It would help so many people.
Alice.

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by hightechgrammy 24 Feb 2011

Thank you, Alice, I am so glad things have improved for people since 1987. Ben has a very full life in our community. He lives at home and has all his medical needs met through Medicaid. I would like to write the book, but haven't figured out what the focus should be. Thanks for your nice comments and encouragement! Jan

Jan what can i say. Ben was sent to you because you were the one!!! Write that book and i will buy it, You are an inspiration to all :)

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by hightechgrammy 24 Feb 2011

Thank you, but truly, I am just a regular mom.

I would like to hear your son sing also. Is there a way to post it on here so we all could hear him? God Bless you. When my kids were little one had asthma and 2 are diabetic. Takes a lot of care also.My kids are now 52,49,and 46. One is on an insulin pump and the other takes 2 shots a day God gives us the atrength to get thru it

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by hightechgrammy 24 Feb 2011

It sounds like you, too, have had some big challenges with the asthma and the diabetes. Many moms who carry children with genetic syndromes have medical challenges because the placentas leak into the mother's systems while they are carrying them. I have asthma and diabetes II also. The Joy of the Lord is my Strength! Thanks for your well wishes!

Faith in GOD can do wonders. You and Ben both very blessed. We are all blessed and inspired by your story. Thanks for shareing it!

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by hightechgrammy 24 Feb 2011

Thank you for the encouragement!

I think that you and Ben are outstanding. God gave Ben to you for a reason that only he knows. Just love and support him as you are. I have lost a child and with much rather have a child like Ben than none at all. Bless you both.

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by hightechgrammy 24 Feb 2011

I think losing a child would be the hardest of all. I am so sorry for your loss. We nearly lost Ben three times, and of course we don't know how long we will have him. Ben had a time when he had as many as 50 seizures a day. God gave us a miracle and took Ben's seizures away. He has spread the Joy of the Lord every day since.

I think I should thank you & Ben for sharing your story because you have reminded me to appreciate the many blessings that I have in my life! Hugs Loralye

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by hightechgrammy 24 Feb 2011

Loralye, Thank you for recognizing the extra effort it takes for taking care of special kids. Everyone has a special challenge of some sort. Thanks for the hugs,
Jan

I think I can relate a little. Although not as extreme as your challenge, my oldest is severely allergic to milk (the way some people are allergic to bee stings). If someone told me, when I was very young, that I would be dealing with this challenge I might have been extremely worried. But when it happened, I just dealt with it and it became a normal part of our lives. Sleepovers, field trips, all became a different experience than for the rest of the kids. But I can't imagine life differently. I don't even think of it as a challenge anymore. I hear about other people's challenges and I think, "that must be hard", I actually forget that I have the same or similar challenge.

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by hightechgrammy 24 Feb 2011

That's what I am trying to say. You just do what you need to do and you adjust and you live your life that way. After a while that just seems "normal" and you just learn to adapt your lives to meet the needs of your children. WE go out to eat, but we go at 4:00 when the restaurants aren't crowded or noisy. I buy typical shoes, but send them away in plenty of time to have the lift put on the left shoe and have them returned in time for the dance. I buy the jeans, but make sure the waist is larger so I can add the inside elastic so he can pull them up himself. That's what all moms do - we go around and make things work out best for our kids!

I am sure that each of us would love to hear Ben sing. It would be a delight for me to hear him, with all of his problems sing praises for being here on this earth. I am also sure that he has had alot of angels watching over him from the minute he was born, some earthly and some heavenly. Many blessings to all of you! I am sure that you and the rest of your family has been blessed by his coming to be your son, grandson, family or friend even through the bad times. It sounds like to me that you were sent an angel to share your love and life with. All of my life I have been told that the Lord does not give you more than you can handle. Problem is, some people refuse to even try. How special you and your family are!

We have big hearts and share them freely. We will always support those who need it especially Gods little children. Ask and you shall receive say the Lord. We are all here hfor a reason. Suzanne

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by hightechgrammy 24 Feb 2011

Suzanne, So many people believe this, and unfortunately there are some people who just can't understand this. Some look at the special people and think they are a burden on society. They can't see the beauty and the joy they bring to the world. They are the ones who miss out. I am really worried that since they don't add a financial benefit to the world, that they will become devalued. It becomes a political issue, which it should never. It's a matter of faith in God. Thanks for your appreciation of all the special people!

HUGS and warm wellwishes for you and Ben

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by hightechgrammy 24 Feb 2011

Thanks for the hugs - I can never get enough!

Jan, have you recorded Ben singing Amazing Grace? love to hear it. Betty

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by hightechgrammy 22 Feb 2011

Hi Betty, If you send me your email, I'll send you the mp3 of him singing it. I also have one of him singing Give thanks when he was little. Thanks for caring to hear it.

by shazells 23 Feb 2011

could you also send it to me please shazells33@bigpond.com thank you and hugs to Ben

You are right - women are strong and I still think that you are an amazing person. Your story gave me so much to be thankful for. Hope Ben had an awesome birthday. Hugs for you and Ben.

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by hightechgrammy 22 Feb 2011

Thanks for the hugs - they really give me lots of strength. Who is that with you in your picture?

by airyfairy 23 Feb 2011

They are my twin GC. Ben and Georgina. My daughter was told she would never have children but after 9 IVF's and 40 years old we have our amazing twins. I get very emotional when I read stories like yours. We have been so lucky although it was a very difficult start with our Ben. More hugs Sarah.

Thank you for your inspiration.Keep up the good work.
I know first hand that it is not always plain sailing.
Hugs and Best Wishes
From Bev
P.S. Have you read this book:
My Left Foot (1989) - IMDb
The story of Christy Brown, who was born with cerebral palsy. He learned to paint and write with his only controllable limb - his left foot. With Daniel Day-Lewis ...
www.imdb.com/title/tt0097937 - Cached

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by hightechgrammy 22 Feb 2011

Hi Bev, I have read that book, it's amazing and so inspiring! Did you ever hear of the Rainman? The real Rainman, Kim Peek was a friend of ours, and he had FG syndrome, on of the same things Ben has, along with the same brain malformation. In some ways, they were very much alike, except Kim had all those extraordinary talents. Their mannerisms were so similar. Do you have a special person in your life too? Hugs, Jan

by bevgrift 23 Feb 2011

Yes I know of Kim and was greatly inspired by his story too.
My special son Robert is now 30 yrs old.

by hightechgrammy 24 Feb 2011

Does Robert have a diagnosis? I'd love to know about him too. PM me and maybe we can chat!

in case this can help you when you have a hard time, here's a hug for you and Ben!Thank you for the post of yesterday and today!

1 images:[1]

Gods gifts: I have my grandson Tim and had the hard question from my son MOM why me what I do wrong ? My answer was God look all over the earth because he needed to send Tim to Earth and pick our family because we had the skills to do what was necessary to take care of such a special child Tim was not given a chance after they gave him the diagnosis said they didn't know how to treat someone with no growth harmone and with so little pitiuary and a stroke in utero he was less than 4lb at a year old My son said where their is life their is hope signed the papers for the use of a new drug with tests to seen what results he surprised the doctor and started to grow being a nurse with experience with children with problems I and my son and family and support staff did round the clock care he is now 16 can walk is potty trained can express himself and let you know when he wants something need some assistance with ADL their is a lot he can't do but he had made a difference in the medical breakthru dosage of growth hormone and it uses that have change so many lives and they give it for so many things now He help more people than some Doctor's do in a lifetime Now their are some who would say why spend the time and money he just a drain on the social system but they just don't know how many lives he has change by just being TIM so I'm bankrupty finacially but my family has been so blessed by having Tim be a gift to our family so may you be blessed and know that God chooses those who are willing to care for the special one's that he send to help the world be a better place. You know lots of people who care for these special gifts write a book for all of them about the positive experiences of love and learning to make the world a better place and help people to understand that they are not a drain on the social system but the most valuable of our society

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by jrob 22 Feb 2011

Matthew 25:40 (King James Version)

And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.

by hightechgrammy 22 Feb 2011

Tim must be a very special young man and he has touched so many lives - like Ben! What a wonderful story! Where do you and Tim live? It IS very expensive raising a child with so many medical challenges. It sounds like there is more Right with Tim than wrong. How wonderful that you are such a supportive grandmother. Ben's grandparents try, but they really haven't been very supportive. They are the ones who have missed out. He loves them, but I cannot take him to their home.

by ksieminskie 23 Feb 2011

we live in the hills of Oklahoma a long way from medical special hospitals it is close to the corner where oklahoma mets texas/LA/AK

Jan, I just want to let you know that after I had read your post yesterday, I could not respond. It just brought tears to my eyes and I had to shut down my laptop. I have thought of you and Ben all day and all I can say is "You are one awesome Mom and Ben is one special young man that was given to you for a reason. I am lucky to know someone like you thru this wonderful caring site. Carol

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by hightechgrammy 22 Feb 2011

Carol, that is so sweet, but I didn't mean to inspire you shut down your laptop! This is the best site, isn't it! Have you known a person with special needs? Thanks for your caring.
Jan