Where is the help for me and my family and others like us. There are programs and funds for just about everything out there these days. I however can't get any help from any programs.
I NEED to be involved in every aspect of Tanner's life. I really don't trust anyone with his precious life. I NEED to be present at his therapy sessions. I NEED to be able to learn the exercises to be doing with him when the therapists are not here. I NEED to be the one to take him to his doctor and specialist appointments. I mean, I have a ton of questions and concerns. I NEED to be the one here to help him if he has a seizure. What I NEED is some help to make this possible.
When Tanner was diagnosed a social worker contacted me and said that Tanner's syndrome qualified him for social security. I talked about it a lot to her and felt relieved that there would be some assistance for me to be home with him. Well, we were denied because of Justin's income.
Don't get me wrong. I am by no means crying poor here. Justin does make a nice salary and he is totally working as hard as he can. We are very blessed in many ways. We live in a beautiful house in a great neighborhood. We have a reliable car, nice clothes, food to eat, and the kids are happy. Here's my problem: To live in this house and keep things afloat, we NEED to have 2 parents working and that was our plan. Now, it's like we have to choose. If I don't work we really can't afford this life that we have. If I do work Tanner will be at a daycare that his therapists visit and who knows when and how his doctor and specialist appointments would work out. There are so many I would probably have to use vacation days and then just after they run out just take days off unpaid. Not to mention how very unreliable that makes me to an employer. I think my only option is to scrap the education that I got and go back to waitressing at night after Justin gets home. Which isn't the end of the world.....there are plenty of mothers and fathers out there that do what they have to do. It just doesn't seem fair to have to make such a choice. Choosing between our home and comfortable life in order to give our baby the care he deserves. The stress of his syndrome is overwhelming at times. The financial burden that has followed certainly doesn't make things any easier. The part that really bothers me is that so many people get social security. Recovering alcoholics and drug addicts can get social security. I'm by no means saying don't give it to them. Everyone deserves a chance to get back on their feet. They however, put themselves in that situation. They could have helped it. Justin and I didn't do anything to cause Tanner to have Wolf-Hirschhorn Syndrome nor could it have been prevented.....so why are we denied that assistance that so many others get? We're just trying to do what's best for Tanner and that really is having his mommy taking care of him during these first few important years. I know him best!!!
Look at the same people get cash, food, and energy assistance. Some of these people milk the system year after year......generation after generation. Some of these people are totally capable of working. They're just lazy and keep collecting their free money and food. They keep getting approved though. I can't get Tanner approved for social security.....a girl who has always been a hard worker. Sometimes working 3 jobs at once even. Always paying taxes and paying into social security. Nah, why would they help honest people like us???? So, it's back to waitressing for me unless anyone has a great work from home idea that want to share with me. I know this post is a bit personal but I just had to get this out there in hopes that somebody may have a suggestion for me whether it be a program that may be able to help us or a work from home idea. Thanks for reading my frustrations:)
I'll leave you with this cheese doodle eating baby to cheer you up if this gloomy post depressed you like it does me. Seeing this face always makes everything okay.