Wednesday, December 7, 2011

Holiday cards

I apologize in advance to all of you  that will be anxiously awaiting for our holiday cards this year (insert sarcasm).  Last year we had a wonderful photographer that took some great pictures of our family for holiday cards.  Although the pictures turned out great, the amount of stress and anxiety it caused was more than I could handle this year.

I thought that I could reduce that stress level this year by just snapping a few pictures of the girls and throwing them on a card, stamp and then done.  Wrong!  Here's what ya' got instead:

It started with Lauren not being impressed that Reagan was sitting on her chair.  "Mine" is her new favorite word.

Okay, we give but that doesn't help because...

This is what you get, completely unprompted response of a 2 year old.  At least Reagan thought she was funny.

A hug goes all wrong

A lens cap given to a 2 year old as a means of distraction because food.

Sealed with a kiss, too bad it's not holiday card material.

Monday, December 5, 2011


Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns all clean. –Maya Angelou

I am not generally a bitter person, rather I work hard at keeping it under control.  I try to maintain my focus every day on the positive and the tasks at hand, instead of getting overwhelmed by the big picture.  The big picture is daunting, because it involves how Rett Syndrome will play out over the next 10, 20, 30 years.  That scares me to my core.  So, I choose not to think about it and focus on the day to day on how to care for Reagan and overcome the monster that has taken over her body.

But, earlier today it got the best of me.  It's not something that I am proud of but this is my space to express the frustrations of our journey with Rett.  I usually tend to push those feelings down deep and put on my "I accept it" face.  I was not sure why today was different and it was not until after a good workout, a glass of red wine, and an even better cry that the deeper reason for my bitterness hit me.

This time of year is especially difficult.  The Holidays have me longing for my daughter to be able to use her hands like a typical 4 year old to play with her Barbie dolls that she opens on Christmas morning.  It makes me ache to hear her voice speak to Santa when she sits on his lap.  And besides all that, it's a reminder that just two years ago during this time we were anxiously waiting to hear back from the Geneticist on the outcome of the test that would forever change our lives. 

So, this is one last post to put it all out there because tomorrow we are back to our normally scheduled program of "I am coping well".  Stay tuned for happier posts and cute pictures!


Some little known facts about parents/caregivers of special needs children (courtesy of National Family Caregivers Association):

*More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.

*Caregiving families (families in which one member has a disability) have median incomes that are more than 15% lower than non-caregiving families. 

*Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a family caregiver's life.

*The divorce rate for parents of special needs children is reported to be as high as 80%.

I have the same worries as every Mother:  the mundane things like grocery shopping, laundry, and paying the bills, as well as the bigger worries of money, well-being of my marriage, and health of my children.  However, as a Mother of a special needs child, I also advocate for my daughter's right to an education, dispute the insurance company's refusal to cover the costs of my daughter's necessary medical supplies, and ensure that the doctor's office called in that prescription because my daughter can not miss one single dose.  

Then there is the daily grind of caring for a special needs child:  the lack of sleep due to a child that wakes up screaming throughout the night, the physical demands of caring for a 35 pound child, the constant measuring of medications, and the worry about their future with a rare neurological disorder.

So with all that taken into consideration, why does it always feel that things are stacked up against parents of special needs children?  The school systems rarely make it easy for an equal education, the doctors' nurses need to be constantly called, the agencies that are set up to assist individuals with special needs are understaffed and running out of funds.

Today I am bitter and angry.  I am fed up and exhausted.  Today I want to quit.  Today another girl lost her battle with Rett.

"Be kind, for everyone you meet is fighting a hard battle."  Philo