The Frustration Continues!

Life can sometimes feel like a living nightmare soap opera!  Just when you think things are status quo - after accepting what is over a period of time - a new kick comes into play.  In the last week, there have been TWO such knock-downs, one for each of our daughters:

• One learned that her hearing has declined significantly in one ear.  Consideration of cochlear implant has been advised, which she is very reluctant to consider.
• The other learned that cataracts are the cause of her diminished vision.  Surgery in the case of RP patients is riskier than the norm, and the opinions on their treatment are varied and horribly confusing.

Both have jobs they can't afford to lose and parents who can never stop worrying, particularly as WE get older and realize that we can't take care of their needs forever!  I guess this is a constant for most parents.  We've spent the last week researching the best retina specialists, cataract specialists, and comparing the two major brands of cochlear implants.  Confusing and exhausting!

Any personal recommendations will always be appreciated!

Memories or Memoirs?

It's often been suggested that I write the story of my journey with two children with Usher Syndrome.  I suppose I could have started a long time ago, but at the time we learned that Roberta had it - at age 18 - we were all rather in shock and denial.  We had spent all those years learning to deal with hearing loss in both girls, and those efforts were obviously successful, but this was a whole new set of challenges for all of us.

I have a way of handling crisis - very differently from my husband.  Through the very many years of our marriage, we have always accused each other of not understanding the other's way.  He accuses me of dealing with it all on an emotional level; I believe he only approaches the issues logically and rationally and doesn't consider the emotional/psychological/social aspects.  This has caused considerable discord, but we have weathered many crises together.  After almost 45 years of marriage, we are still together!

And together, whether planned or not, we have caused the disability issues in our children, and so it is our duty to help them become the best humans beings that they can be.  I believe we have succeeded!

So....in 1989, Roberta was diagnosed with Usher Syndrome, Type 2.  At that time, there was little known and little research into its causes, nor had any genes yet been identified.  She was a Freshman in college at a prestigious MA university, had always been an excellent student, and wanted absolutely NOTHING to do with this "thing!"  Who could blame her?  She was in her prime, away from home, and independent for the first time in her life, and she was thriving!  It was a blow to all of us.

The doctor/researcher at MASS Eye & Ear Infirmary was less than kind and helpful.  He WAS, however, interesting in getting her into one of his research studies (which I erroneously called a "project," for which he reamed me out), and considering my horror over the diagnosis as well as his admonishment, I might have preferred a little sympathy and education.  I recovered from him and from the news, but I must confess that it was not a happy time in my life.  I went through my new grieving process - virtually alone - with little support from family, friends, service providers, medical personnel.  And once again, I gained traction on my own emotions by trying to learn as much as I could as quickly as I could.

The same doctor  insisted that our other daughter, also hearing impaired, MUST have this same syndrome.  She was not having any of that!  She lived hundreds of miles away.  And she actually manifested no symptoms until fairly recently.  But now her progression seems to be more precipitous.  To this day, she has not confirmedly been diagnosed with Usher, due to the fact that she is living in NC where there seem to  be no ophthalmologists who specialize in Retinitis Pigmentosa.  Anyone reading this who knows of a retinal specialist familiar with this condition, please leave a comment on this blog.

OK....that's enough for today.  If you are inclined to comment here or on FB, I'd be happy to know if you'd like more info about the early years with two hearing impaired youngsters.  As my daughters are now grown (I'm a grandmother of THREE beautiful boys and girl who are not afflicted but carry the recessive trait), I am more focused on the present.  But I do feel I have much to share with young parents who may be recently dealing with a new and painful diagnosis of hearing loss or deafness or other child disability.  I welcome all comments.

It's been a very long time......Dealing with child disability!

Not only has it been a very long time, but it's been a very emotional time period.  Where to begin?  Maybe at the beginning of my journey as a parent.

I am the mother of two very special daughters - special in so many ways!  And they are exceptional human beings!  My journey as mother has been fraught with many ups and downs.  It's been an enlightening learning experience since 1971, when our older daughter (Andrea) was diagnosed as hearing-impaired at age 3.  Imagine 1971!  There was no Internet, no information, no ready source of resources to help us even begin to deal with child disability.  What do new parents know?  Virtually nothing, for there is no prep course for parenthood.

Our second daughter (Roberta) was born that same year, 4 months before Andrea's diagnosis.  Immediate hearing testing was inconclusive; it wasn't until she was 13 months old that her hearing-impairment was deemed conclusive.  We were now the parents of two hearing-impaired children, four hearing aids, and little else.  We knew no one who shared this experience.  It was frightening, isolating, depressing.  With the help of some wonderful friends and a few good professionals, I began to relate the experience to Kubler-Ross' On Death and Dying, viewing the process as one of grieving.

The stages Kubler-Ross identified are:

• Denial (this isn't happening to me!)
• Anger (why is this happening to me?)
• Bargaining (I promise I'll be a better person if...)
• Depression (I don't care anymore)
• Acceptance (I'm ready for whatever comes)

It wasn't until I felt relatively more educated on the subject of hearing loss - which was no mean feat without today's Internet - that I understood the loss (grief).  In addition to the stages identified above, I grieved for the loss of expectations.  New parents have high, and sometimes unrealistic, expectations for their children.  I agonized: 

• will they talk?  
• do they and we need to learn sign language?  
• will they be reasonably well-educated?
• will they be able to support themselves? 
• will they find happiness in this life?  will I ever feel happy again?
• how will they cope socially, emotionally, physically?

There were so many unanswered questions.  Life was in turmoil.  But I knew I had to do everything in my power to help them succeed in having a normal life.  But what was normal anyway?  Was it a blessing that they both had the same condition?  Or was it just one more twist of fate that one couldn't help the other in hearing, speaking, playing, communicating, socializing?  

Those years are rather a blur.  They went to public schools throughout their childhood - with limited special services from a gifted teacher of the deaf.  They talked!  They were mainstreamed!  Mostly they managed in their classrooms with wonderful teachers who learned right along with me and from me.  I became an advocate for them and their educational process.  In high school, they were pretty much independent of me and of school-provided resources.

Both went to college; one has an advanced degree and works as a school psychologist,  The other works for a medical research company.  One is married and has three lovely children; the other is single, dealing with changes on her own.

In 1990, everything changed again.  You'll have to read the next installment to learn what came next!

To be continued.......!