Why Write a Blog?


Why am I writing a blog? I want to share a fairly unique situation and to hear from others who can relate and may have something to add.
 

My husband, Joe, and I continue to live with our middle-aged  daughter.  With her sweet and trusting personality Alexis has brought much that is positive into our lives and we have tried to do the same for her, even though she faces multiple challenges every day.
 

  Alexis has a severe form of epilepsy, as well as spastic quadriplegia and cortical blindness.  She has no formal communication system and very limited cognitive functioning, apparently - although sometimes she surprises us!  
 

 Alexis demonstrates a strong  interest in music and we have a lot of fun together exploring different musical genres and evaluating the work of various singers.  Alexis has definite dislikes and preferences in this area and it a great pleasure to observe her intense appreciation for some and disinterest or even distain for others!

Comments

Post a Comment

Popular posts from this blog

The Travelling Bathroom Dilemma: Request for Submissions

Image
                   The Travelling Bathroom Dilemma   Request for Submissions    Stories about Inaccessible ‘Accessible Washrooms’     Editor:  Emma Pivato   Stories 2 to 6+ pages in length will be considered.  You can talk about your worst nightmare story of being stuck in public without a washroom that works for you, or you can just talk about the daily grind and all the things you don’t get to do because of this problem.  Also talk a little about yourself or your child:  who you are, what you enjoy doing, what you would like to be doing in terms of travelling or socializing or work or school, if not for this problem.  If you are parents, you can talk about the effect on siblings and the extra burden this bathroom problem has placed on you and your partner, as well.   This book of stories will bring this problem out of the shadows an...
Read more

How to make lemonade out of lemons – even when the lemons are bitter

Image
  Alexis age 11 - at school                                                  Alexis, age 30, and Joe in Mexico How to make lemonade out of lemons – even when the lemons are bitter Lesson One:  Trust Your Instincts – When Alexis was born in 1978 I was told by the attending pediatrician that she was fine, even though the delivery had been difficult.  She was not diagnosed until 9 months later – although I always suspected.   But by that time I was used to seeing her as a normal baby with normal baby needs.  Besides, I was at that point working towards a Ph. D. in Developmental Psychology so I was oriented towards meeting  developmental needs, not special needs.  An incident which occurred shortly after her diagnosis as blind and “severely developmentally delayed”  pushed me even further in that di...
Read more

Alexis at 40

Image
                           Alexis' 40th birthday party, with her friend, Trevor blowing out the candles. Alexis at 40 Who knew that a daughter born with such multiple challenges and crippling epilepsy could live this long – certainly not the many specialists we have contacted through the years.  Who knew that by taking such good care of her we would continue to enjoy the pleasure of her company on a daily basis in our old age?  Certainly not us when we undertook this commitment to her at the time of her diagnosis at 9 months of age. Did we do the right thing by wrapping our lives around her?  Did our other children suffer too much?  Did we give up too much:  career-wise, socially, personally?  As I conclude in the memoir I have just finished, that is a question that can never be answered.  One thing we do know for sure:  she would not have lasted otherwise.  ...
Read more