Gratitude Journal

First an UPDATE on my Mom. She is still in the hospital and it doesn’t seem like her breathing is getting any better. We are still praying. I am getting a room ready for her here with us, once she is released. I think she will have to get a lot better before that happens but she is excited to know I am going to keep her here with me until she is well. I want to thank you all, from the bottom of my heart, for your prayers, your concern, and just your great big compassionate hearts! Love and Hugs to all of you! I am truly Grateful for each and everyone of you! Please read on for our little family encore……..

Slice of Life choices for the week of April 27, 2008 are:

1. Family vacation.

2. Family heirloom.

3. Community service.

Go Here, to play along or to read what others have written. Now let me tell you what I like so much about this meme. NO RULES!! You can choose any of the weekly prompts from weeks before and there is no special day it HAS to be posted. Sometimes I read a prompt and nothing comes together in my mind, but weeks later TADA something moves me. This week I shall write about “The Illness of a Child”

When I think of the illness of a child, the image that comes to my mind is one of a youngster. We have all been through those illnesses, measles, mumps, or just some nasty flu. I think of children with cancers and other fatal dieseses. I have learned a lot lately about Autism and I wonder what that is to deal with in a child. All of these images and more rush into my mind and yet I am going to write about the illness of MY child, who is 34 years old….
Massive headaches, the kind where you have to have silence and all the lights turned off because it hurts so much. Migrain, thats what they call them when they can’t find a reason for them. Thank God, my daughter did not stop at that, with two small children, a husband, a business to run, and a new home being built there was just no way to turn off the lights and shut off the noise.

The next step was an MRI. The doctor for some reason ordered an MRI and a contrast MRI. The contrast scan is not normally ordered unless there has been head trauma, so why the doctor ordered it remains a mystery to everyone but God. This scan revealed Arnold Chiari Malformation or ACM. This is a very rare birth defect not normally found in time. These are the basics…the hole where the spinal cord goes into the brain is malformed, it is too large and allows too much spinal fluid into the brain. You can imagine the pressure. The bad thing about all of this is as the spinal fluid is forced into the brain it also forces the brain down into the spinal cord. Enter the Nuerologist…..

The nuerologist doesn’t think her ACM is bad enough to require surgery at this point and that is the only treatment so he prescribes some hefty pills for the headaches. The pills do not help her at all so…Enter New Nuerologist…..

The new nuerologist says on top of the ACM she has 5 herniated discs in her neck and he wants to know what college she played football for….hehehehehe. She is to start physical therapy for the discs. He also notices she has 3 growths on her thyroid gland so…..Enter Endrocrinologist.

Mindy manages to get to therapy 3 times a week for six weeks. A trip to the endrocrinologist reveals the thyroid is producing hormone but a biopsy is in order. Fortunately the biopsy is negative. The thyroid gland must be monitored closely. During this time female problems arise so she sees the Gynocologist and is scheduled for surgery. Complications arise and the surgery is cancelled, instead they do a D and C. Problem solved, temporarily. Within two weeks she developes a rash on her head and her hair starts falling out. Not just a few hairs, lots of hair, enough to cover the drain in the shower. Mindy called her nuerologist and he refers her to a dermatologist. So….Enter the Dermatologist…..

Two weeks ago Mindy had her appointment with the dermatologist. He did a biopsy. He also did some blood work to look for different things that cause your hair to just start falling out.

Now I tell you all of this for one simple reason, grief. As a mother I want to do something….anything! I can’t stand that “they” refer her back and forth from one “specialist” to the next. I want some say here. When your child is 34 you have no say. You don’t get to ask the questions. You don’t get to know about all the medicine. You don’t get to disagree with the course of treatment and you don’t get to control the diet. It is a hard lesson but you don’t get to be the mother. This person that you have spent your life taking care of is able to take care of themselves and others. It is very frustrating. You have always been able to make her days better and kiss away the boo boos. Not today. There is no cool cloth to fix this. An orange popcicle doesn’t bring a smile any more. I want someone to take the time to connect the dots here. There are too many things way too fast. My dear God, there is really something wrong!! ….and I can’t fix it. I am trying to be careful here and not “mother” aka “smother” her. I am growing weary of all the doctor visits. I am sad because my child does not feel well. She is in constant pain of one sort or the other. She is short of breath. She still has the headaches. As her Mother I want her to get well. I want to see her happy, smiling and laughing again. I want everything we always want, just like a two year old with a tummy ache, I want it to go away.
Mindy went back to the dermatologist on Tuesday, she called me as she left the office. All the “specialists” she has seen in the last year, finally, someone connected those dots…………..lupus. UGH!!! Not what I wanted to hear. I know how serious this is but I also know how far medicine has come. I am grateful to finally know what we are dealing with. It is not a death sentence like it used to be and there are lots of treatments. Mommy is not going to be able to kiss this boo boo away. I can only hope an orange popcicle will bring a smile anyway…. Enter the Rheumatologist….