Diapers and Teenagers

Having a child, who is 13...but in diapers and on a 100% feeding tube regimen...is alot of work. I have several pretty amazing nurses who help me out...(thank you Title19 medicaid...Daniel gets nursing care now) But I am blessed and grateful.

I don't know why I'm thinking about this...but never in my wildest dreams, when I had my babies...did I think I would be changing a diarrea diaper of a teenager.

It breaks my heart in a weird way.

Happy New Year 2011

Happy New Year. Its 2011. And here I sit...wondering how the year will play out this time around. Our holidays were very nice... and thankfully Daniel has remained healthy. I just have this feeling of disorganization in my brain..because there are so many things I have to manage. His school, his therapy, the progress of both...the equipment, the insurance, the medical issues... ALL THE DOCTORS APPOINTMENTS.... scheduling... And I ask myself daily....is he getting what he needs, could he be farther along... am I doing the best I can for him?

But you know... its so difficult....this boy relies on me for his every bit of life. But I am also a wife and a mother to my husband and other children. I am many things to many people.

And I feel pressure... so I put it out there to my faith in Jesus and hope the universe will continue to help us along. I am on so many medications...for depression, for fibromyalgia, for pain, for my thyroid.. all of my conditions are attributed to stress, sleep deprivation, and depression.

Its a pretty dark place sometimes....but I have to find coping strategies.

New Years resolutions????? hmmmm To be more organized. To find a way to make more money in order to pay our debts and bills....and keep life going. To be a better cook. To find some crazy little time for myself. To see Daniel walking more and doing more. To lose 40 pounds and regain my love of exercise as opposed to hiding in bed with my computer.

I have more....those are the start. But as I write this, I recall that Daniel (age 13 now) had a slight fever last night...I hope he wakes without one. I never know from one minute to the next what will be in store for my day. Do you live a life like that? Its very hard.

And other things here in this house are hard on me....but I can never give up.....

So happy New Year. But not happy pile of old bills and pressures. We bought two quick picks yesterday..lottery is up to 290 million. I would settle for about $100,000...or even just $5000. I just know that something has to change and I need to figure out what.

But one thing remains constant. I am the Mom of a boy with Polymicrogyria....he is a concern and worry every second of my day. and I can never become complacent.

Happy New Year. 2011. I think I need a pill for anxiety.