Monday, January 10, 2011


One thing we as Rett parents scream about the most is that our girls are trapped in there. In little bodies that don't work. We spend the majority of our time trying to convince the world of it. In between sleepless nights,diaper changing,baths,wrestling with providing care for a child that can do nothing for herself. It is a 24 hour a day thankless,payless job.

Seriously, no one ever says thank you or hands you a paycheck. Vacation? Nada. Benefits? That's funny. The only benefit I have is looking into my own eyes each day at a person who sees me as her world. The love that comes from that is unexplainable and worth more than any paycheck. Although a paycheck would be nice.

In most cases RettMoms are not just everything to that one little child. We are also Moms to other children..although less than we were before. A guilt we have to live with..hoping that one day they will understand and forgive. We are wives..although I personally suck at that time. We are friends and confidants to other parents that we do not know. For those few of us that actually get to meet there is an instant bond...barring the occasional weirdo. Everyone knows someone who is a strange one. Rettland is not immune. In fact I'm kind of sure that we're all just a bit loony..some of us just choose to take their lunacy to an all new extreme. You know who you are.:)~

In those few moments each day where I am not elbow high in meds,feeding bags and other peoples feces I make an attempt to make a difference. I think out of that need to fix it and knowing I cant I reach out and support other families. The only thing I can do is try to make someone else feel better. Weather it be words on a blog, phone calls in the middle of the night from a Mom who is losing it or giving advice to those who have nowhere to go and no idea where to begin. It is my therapy and my reward in a world I have no control over.

Trapped? Yes. Rett Syndrome has trapped my whole world. It trapped my daughter in a world she can't escape from. It took away my ability to provide for my family..although the Government and insurance helps with that. Not by actually helping but by having rules about pre-existing conditions and outrageous rates for those who have them. The Government is nice enough to give her Medicaid. Although it comes with rules like..we can only own one car, For every dollar we make over our standard income they take away 50 cents from Abby's benefit amount. Once that amount is taken to 0.00 they take her Medicaid. So I could leave the house and work.Providing I could find a job that would let me leave 4-5 times a week for the whole day or at least half of it. Then of course if they paid me then that would take away the one thing that feeds her,medicates her, pays for her equipment rental and her diapers. I suppose I could work for free if they would give me insurance,,kind of what I'm doing now but I would be doing it without being able to care for her. Trapped.

This week has worn me down. The Scoliosis,The fight with the school over therapies and providing eye gaze options for her. The tears nightly over why the school doesn't have to provide any more therapy than will what will enable her to manipulate her environment...that fight is just uncalled for. God forbid we try to make this fragile little child stronger or more able. Lets just do the minimum to collect our paychecks. Who gives a crap about the kids?

The last few days, OK 5 or 6 days Abby has been having some severe GI issues as far as pain go. She screams and bites herself. She pulls my hair and bites me. I have to comfort her to sleep with my arm stroking her but my head far enough away to keep from getting attacked. I am weary. I am exhausted. I am trapped.


Ann Marie said...

You do an amazing job advocating and fighting to get Abby what she needs. I wish the school system didn't make us fight so hard. It's crazy. I hate that Abby is so uncomfortable right now. Hopefully, you will both get some relief soon!

stefanie (christopher) gutierrez said...

hang in there louise, it will get better. sounds like we're both stuck in valleys right now, but wait til we get to the top of that mountain... hopefully the sun is warmer there as we scream HELL YES! when we secured for our daughters what they needed. you and abs are lucky to have each other, and anna and me are better for knowing you. love you, xoxo

Anonymous said...

I'm a freshman in highschool and I stumbled upon this blog while doing a report on Rett Syndrome for Biology. I just want you to know that I am in awe of the care you give to Abby (she is completely adorable, by the way) and that I greatly admire you both. Hang in there!