Tag: guilt

Something I want to write down to remember, to put into words… When Rachel died, a small part of me felt relief.  For me.  For her.  Some people who have a child die after a very long illness don’t feel this way and some won’t admit to feeling this way. But I felt a small piece of relief when she died.  I feel incredibly guilty for this feeling.  My daughter died after suffering for a long time.  It wasn’t, usually, painful for her.  But emotionally, she missed out on several good years of life.  Batten Disease robbed her of her sight, her ability to walk, function normally, her friends and her childhood. It got harder and harder to take care of her.  Listening to her talking incessantly.  The diapers that followed.  She couldn’t leave the house, she didn’t really want to leave the house.  It was really hard on her.  Hard on me. Hard on her siblings. There was definitely a strain on our relationship that grew more obvious to me as she got more affected by Batten Disease, as more of her brain cells died.  I am sure that part of my feeling of relief comes from the strain(read the rest)

It’s a different kind of Christmas this year.  There are 5 stockings hung, the house is absent one husband and has gained one puppy.  Rachel’s health is continuing to decline on a continual basis and my other three kids are aware of some of the harsh realities of our life, more than last year.  Rachel’s speech is becoming harder to understand and she is mostly in a wheelchair or on the floor crawling but I have her walk to the bathroom and to her wheelchair on the front porch.  Often when she is in an angry mood she gets upset easily and screams like a toddler when her needs aren’t immediately met, other times she will sit content for hours listening to her favorite shows and movies. Her decline has been hard for me because I have always liked to get out of the house and DO stuff.  We’ve spent more time at home this past year than we have ever done before and I find it depressing.  I’ve avoided the thought of obtaining a wheelchair van because I’m able to lift her as she still has some lower body strength (although it is considerably weaker since this time last(read the rest)

is drawing to a close and I’m up by myself tonight (a special shout out to our cat, Krabs, who is sitting next to me while I type). Christmas was good, we went to my Mom’s for Christmas eve and raced home to put out the reindeer dust, milk, cookies and carrots. Santa brought Rachel the “babydoll” stuff she asked for, PIXOS for Julie, an army tank for London and the Buzz Lightyear “yard” that Boston has been talking about non stop. It was a really nice day and the kids have finally calmed down from all of the excitement. Today I brought up our Geotrax stuff that has been sitting in the basemenrt for at least a year and the kids played with it for HOURS. For whatever reason we don’t have a complete remote control train for the set (either the RC or the train but not a matched pair) and I looked everywhere. The kids manually pushed the trains for hours and had such a good time. I was going to play with the wii fit tonight but I didn’t have the heart to put away their train stuff. They are such good kids I am absolutely(read the rest)