Tuesday, May 24, 2011


Warning: This may make you mad or sound like I am complaining... so if you don't want to hear it... don't read it!! : )

Ok... I am having a hard time understanding why things are the way they are... BACKWARDS!!! I know that most of you that are reading this know us personally or can relate to our situation, but it really urks me that there is NO help out there for us to support Baker. Sure, there is SSI, but that is only because Derek and I make hardly any money. And what we get, doesn't even cover our electric bill. You see, Baker isn't considered disabled because he isn't 18 years old, so we can't just get disability for him. (Which is SO stupid!!! Cause he is in EVERY sense of the word, disabled.) The only reason we keep him on the SSI is because we HAVE to keep his insurance. Just to rent his equipment a month plus his supplies that we get monthly is out of this world!!! Think about it... rentals on a ventilator, humidifier, suction machine, feed pump, oxygen concentrator, pulse ox machine, plus the equipment that we don't use on a daily basis. Then we get suction catheters, trachs, gauze, syringes, water bags, feed bags, feeding tubes, trach kits, vent circuits, etc... the list goes on and on.

I guess it is so hard for me because, I want to work, Derek and I both. We want to be able to support our family like any other normal family would!! We both want to work full time jobs, and send our child to day care and have to worry about bruised knees, or boo- boos. We already have to deal with the stress and challenges of dealing with a child with special needs, but to have to deal with keeping a roof over our heads, or paying bills, or having food to eat because we are being punished because we have a sick child is just wrong. What is wrong with this world when the people that NEED the help can't get it and the ones who don't need it get all the help in the world???

Baker is 3 years old and we have just recently found out about another program called the Elderly and Disabled Waiver... but guess what... Covington County doesn't offer the respid care that Baker requires. SERIOUSLY??? I just knew that EDW would be the answer to many prayers... but now, I don't know what to do, where to turn, how to make things better! I feel like I am lost!

Most people know me as a bright, cheerful person, but if you really knew me in the privacy of my own home, you would know that I am always worried, about Baker, school, bills, working just enough hours, forms that have to be filled out all the time doctors appointments to make, trips to Birmingham, etc. Life just seems to be throwing me punches left and right, and just when I get back onto my feet, I get an upper cut to the jaw! and Back down I go!

I'm not trying to play a pity party, but I just want people to realize what we have to go through daily!! And when you think things in life are hard, try walking in someone else's shoes!! Even I have to do that! I wouldn't wish this on any child! I am so tired of having to defend/fight for my child and our situation. These so called "jokes" shouldn't be told and when they are, they should apologize, expecially from a business. (I am really trying to let that one go, but it is HARD) It is just wrong! Something has got to be done!! I don't know what else to do other than praying and Begging God for help! He has never let us down and just when we think there is no hope, He always pulls through! We don't have the extra's but we have what we need!

I feel like there is more that I want to say or need to say, but I guess I have said too much! I guess this is my cry out for help... I don't know!

Once again... Sorry for putting it all out there!!!