Is it me?

Okay, so here we are 9 months after the official diagnosis of Klippel Feil Syndrome and I have yet to move forward with the Medicaid Deeming Waiver application.  It is completely overwhelming and emotionally draining.  I have such a hard time trying to write about Thomas' issues and making them sound completely horrible and in the worst case scenario.  The truth is he is doing great!! He is doing such a great job but I know for a fact we wouldn't be where we are right now had it not been for the dedicated therapist who have worked countless hours with Thomas and us working with him at home on a constant basis.  Thomas has great drive and determination and it shows in everything he does and tries to do.  Again, the only thing that I can foresee slowing him down is if the bones in his back do not continue to line up and provide stability for his body and protect his spinal cord. 

I have recently started asking questions about the Deeming Waiver again on a Special Needs of GA support group.  They are phenomenal local parents who have been there and done that.  They had so much love and understanding for me that it made me cry.  They understand how overwhelming it feels to go down to DFACS with your child and wait with all of the other people their with their children. Only they are their for food stamps and help for their families that they can get nowhere else.  You feel as though you don't belong.  You feel like you are trying to take funds away from someone else who needs it more or deserves it more than you do.  I have help, I have people who are willing to support me and help me in any way that we need.  We are not drowning right now because of their love.  Not everyone has that and they have to stay and wait and ask for that help.

Then I see the pictures and read the stories of others and their precious babies and it doesn't even compare.  They need so more than we do.  Thomas is functional and has already overcome so many obstacles in his little life and I really don't see that slowing down anytime soon, again if his bones cooperate.  Then I think how can I make sure that Thomas will continue on this path, its been early intervention medically, its been my perseverance to find the answers and understand what was going on in his little body and what we can do, it was me pushing for evaluations, for therapy, for diagnosis.  Why would this be any different?  It is clear that those with the financial means get the better quality of care and better attention.  I only want the best for Thomas and my entire family and if that means completing this damn application and telling them the worse case scenario then that is what I must do.  I don't have to like it and I don't have to enjoy it.  I need to quit second guessing whether or not its the right thing to do, if its necessary, if, what if. . . I need to leave it to God.  IF we are meant to have help through this system it will be provided.  IF we are not then the care for Thomas will come from another source.  I think I just needed to write this to help me process my thoughts and feel good about what I am doing in my heart. 

Pray for me as I complete the application and the process.  It takes a lot of time, a lot of leg work to get documents from the doctors and most of all it takes me sharing the ugly with an agency that I don't know and have no idea what kind of person will be processing it.  I have already had to fight the insurance agency before and failed even with the letters and documentation to back it up.  Sometimes I just think his condition is too rare and not understood that it is just easier to let it go then to deal with it.

This mama is going to suck it up. . . . for him!