Ashley

   I decided to write my blog today before looking at anyone else's.  I don't want to get into an online screaming match with anyone; I just want to say my piece, well...... peacefully.

   I cared for my husband for nearly eight years, who was physically at the state little Ashley is in, with minor exceptions.  He was a quadriplegic.

   In April of 1997, arthritis in his neck finally damaged his spinal cord during a trip-and-fall incident.  More damage was done due to hypothermia, since he lay in wet grass, under the sprinking system, for 4 hours before he was discovered at 6:00 a.m.  He had been out with his buddies celebrating his 55th birthday.  Ironically, being inebriated saved his life.

   We were thrown into the life of quad and caregiver.  I had to put away my entire life as I knew it, just as my husband had to do.  During those seven+ years, he lost the strength in his tongue and had to endure a trachyostomy to breathe.  He had to have surgery to his neck (front and back) to avoid worsening the damage already done.  He needed surgery to place a permanent catheter through his belly and bladder in order to eliminate urine and avoid further infections in the urinary tract.  Another surgery was performed to place a colostomy bag, since his large intestine had slowly died.  (Before that, I had to manually stimulate his rectal muscles in order for him to have bowel movements.)

   For my part, I transfered him from bed to shower chair and showered him every other day.  I brushed his teeth, and shaved him, and cut his hair.  I had to feed him his meals, and invent ways to keep him hydrated.  Leaving the house for short periods of time for necessary household/banking chores was tense, but greatly helped by the presence of my mother-in-law who learned how to care for him minimally while I was out.  I had to watch for bedsores, and turn him every two hours.  I had to make sure he took his meds on time and in the correct dosages.  At the end, I learned how to administer injections for pain relief as he was dying.

   My husband did not have the problems that a female quad would have .... menstrual cycles being one of them.  I was his spouse not his mother, and I watched his mother struggle to care for him when she tried her best to give me an occasional break.  Dave was 1-1/2 inches shy of six-feet.  He weighed 140 pounds when he came home and we became quad and caregiver.  On several occasions, because a transfer from wheel chair to bed went wrong somehow, I literally had to save him from hitting the floor.  Frankly, I don't know how I managed the strength to lift him and transfer him.

   It took us an hour to get him ready to go in the van to shop or visit the neighborhood.  It took us three hours to shower, shave, brush teeth, change linen, and get him comfortable again.

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   But I did not tell you all of this because I want praise and applause.

   I want everyone who is passing negative judgement on Ashley's family to acknowledge that they have no right to do so.  Very few people who are blatting "Shame!" have no idea what being a caregiver is, and especially caregiving to a child.  The emotional wear and tear of knowing that at some point in the future the child is going to be a fully grown adult, and that caregiving will become more and more physically difficult, has got to weigh heavily on the parents.  Knowing Ashley is manageable at this size and developement, and that she will never be cognizant of what future she would have had as a "normal" adult female, I would have made the same decisions.  Remember, Ashley had the mind of an infant, and she started showing signs of developing breasts at the age of six (according to what I've read).

   I say: G-d bless the family for their devotion through hardship, past and to come.  May they find the strength to perservere through the media-hell they are going through.  And, may G-d shine understanding on those who pass judgement without compassion.

"There, but for the grace of G-d, go I,"  

It would be a good thing to keep in mind.