A new day, a new year but the same old song and dance from Social Security about Nick's disability. He has had to prove he was born with a disability for 19 years and since he turned 18, a year ago, has to do it all over again. I guess they don't know that you will have Cystic Fibrosis until there is a cure. We would love nothing more then to have a cure and not worry about getting any SSI from the government. They have been turning his check of $226 back into Social Security because they (SS) told them if they didn't he may own money back to them. Lets see on one hand you have a healthy life and the hand holds a check for $226, which would you choose? Which would anybody in there right mind choose. Oh that is right we are dealing with someone in an office somewhere deciding if Nick has a disability when all they have to do is go to the internet and look up Cystic Fibrosis and there is your answer.
I wish so for a different life for Nick. Something that would give him some hope for the future. It is not only his disease but his education, the job market, the family of a mother, father and siblings he should have been able to grow up with. He has had a lot more thrown at him then most people know about. I sort of get upset when people are so set on the sex of a baby just pray for a healthy baby and don't worry about what sex it will be. Give them the best life you can give them with lots of love, a happy childhood and guidance for growing into an adult. He has never had the fun of growing up a care free child, he has always had more weight on his shoulders then a lot of adults have had to carry around. In the last few months there have been some caring people come into his life that should have been there a long time ago. Good people that if they had come into his life a few years ago Nick's life would have been so different. I pray it is not to late and they have the patience to see Nick through until he finally figures out what he needs to do.
I know there are a lot of grandmas out there who feel this way about their grandchildren and I would love to hear from them. My heart breaks for Nick and wish I could do more for him.
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Children should not have to shoulder the burden of a chronic illness, but sadly, that situation is beyond anyone's control. I hope the new year is a good one for all of you with fewer challenges than you've had to face in the past. You all have handled Nick's illness with great courage supporting one another at every turn. You deserve a break!!
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