in our hoUSe.....!

in our hoUSe.....!

Thursday, November 17, 2011

There IS Hope!!!

I've been remiss and haven't posted here for quite a while.  Life and other stuff (like the stuff I make!) have gotten in the way.  But always I come back to the issue of Ushers Syndrome - because it affects my life through my daughters.  They are both amazing women with fulfilling lives who seem to deal well with their condition(s).  It takes just an incident or posting on FB or blog posting or conference call to bring the whole thing home again - for me!  But I don't live it EVERY single day of my life.  I admire my girls and all those who have vision and/or hearing issues - for the struggles they most often endure silently every single day of their lives.

I listened on Monday to a conference call/visual presentation by Heidi Rehm of the Harvard Medical School, on the "Why's" of genetic testing for Usher Syndrome, the reasons for the cost, and the time it takes to secure the results.  Is it worthwhile?  Absolutely!  Very costly, yes!  But just today I was alerted to a new research study approved by the FDA for US Type 1b.  So that means that it is very important to KNOW what type of US one has - to be able to be included in the study.  We know that our daughters have Type 2, but we DON'T know which one.  It will be important to know in order to be able to avail themselves of studies down the road.

So much has transpired in the world of genetics for US in the last 22 years since Roberta's diagnosis.  Progress comes slowly, but there is hope, and I always want to hold onto that.

Then I read on FB of Roberta's mishap at school and was devastated for her.  No long-lasting physical ill-effects but the emotional ones wear on and on.  It hurts so much when a mom can't FIX what hurts!

And this morning I caught up on my reading of DoubleVisionBlog, in which twins are undergoing an unusual Eastern medicine treatment for RP, and so far the results are outstanding.  And scary!  And so well-written.  Fear of hope is explored as well as some details of this extraordinary treatment process.  I urge you to read it if you have any interest at all in RP (retinitis pigmentosa).

Let there be hope - as fearful as that is!

Wednesday, September 28, 2011

Vision Walks! Fundraising for the Foundation Fighting Blindness!

My girls are amazing!  I am always proud of them but now more than ever.  They both decided it was time to get involved in fighting for their own cause.  The Foundation Fighting Blindness' Vision Walks to raise funds for research on a variety of blindness diseases and conditions seemed to be right up their alley.  They BOTH committed to doing something they've never done before - establish a "walk team," set fundraising goals, and solicit funds to support their respective walks.

Andrea is walking in Greensboro, NC this Saturday; Roberta is walking in Boston in late October.  BOTH have met their $$$ goals, raising a combined total of almost $4000.00, and both will walk with family and friends.  Andrea and her family made tie-dyed tee-shirts for their team members with the Usher Me In logo on the front.

My only regret:  I can't participate in either walk with them for a variety of reasons, but I will be there in spirit.  I've committed a percentage of my Scarf It Up! sales to this effort through the holidays.  If you'd like to see more of my work, please view my flickr pages, and if you're interested in purchasing anything, contact me via Facebook.  Many thanks to all those who have supported Andrea and Roberta in this effort and who have purchased my creations!

Monday, September 5, 2011

Musings of a Mom!

I've always tried to maintain a positive attitude towards most everything in life.  It is not because I am a person of faith or that my family of origin was positive in nature, or that I married a positive person.  These were NOT the case!  I guess, despite all that, I have my own sense of looking at life to uncover the best possible means to be happy or improve my own situation or that of my loved ones.  Considering the environment in which I've lived 60+ years, I manage to be positive most of the time.  And so it is in dealing with disability and family health issues that have been part of my adult life for 40+ years.

I do get depressed from time to time!  And I do take medication for periods of time when I need it.  And I do talk with a therapist on occasion - also when I know I need it.  In other words, I recognize the signs and symptoms, and I take care of myself.  I have to....because I am needed.  I can't help those in the family who need it if I am not whole and sane. (Tennis and my fiber art help too!)

Somehow, and this seems rather ironic, I've gained strength from the many setbacks our family has encountered.  For example.....the knowledge that one daughter would fail her DMV vision test and have to give up her driver's license - although we knew this was coming - was initially devastating.  A life-altering experience that has been characterized by relief, rather than angst.  I worried more about this lack of driving permission than her driving itself.  And she has dealt with it beautifully - hiring drivers for work, appointments, and errands, and prevailing upon friends and neighbors for other needs and entertainment.  I should have been worried about how safe she was (and others!), and so now I realize why she's experiencing this as a HUGE relief, rather than a HUGE burden.  And she's handled it with aplomb!  So proud!  I pray that our other daughter will accept her fate when it happens with similar equanimity.

Each person handles life's experiences differently.  That's a function of personality and one's personal philosophy.  How do I handle the various tribulations of my life?  Not always with aplomb!  Not always with positivity!  Not without falling sometimes!  And not without failing sometimes.  But I realize that I have a process that seems to work.  If shared, this process can perhaps help others in dealing with their own trials.  But that's where personality comes into play, I think.

Here's what I've done - even before I realized it was indeed MY process!

My initial reaction to adversity is not always good or positive or effective.  In an emergency (such as the many cardiac issues encountered with my DH), I am usually OK through the crisis and fall apart after the critical period is over.  With disability issues for my children, I am initially devastated, shocked, frightened, and immobilized.  I ALLOW myself 24 hours (but generally no more) of self-pity.  Sometimes it's hard to "snap out of it" (as some have advised!)  If it persists for more than a few days, then I know it's time to resort to other means - medication first and then arrange to meet with my wonderful, compassionate but direct LISW.  Generally by the time I get to the appointment several days later, I have snapped out of it, and embark on a plan to DO and COPE rather than STEW and MOPE!  This has proven effective in so many instances!  But this is MY personal plan - it will not work for everyone.

The most important thing is to find the resources and help to develop strategies that WORK for you!  For some, this might be faith in God, prayer, support groups, involvement in disability organizations, writing, helping others, presenting, educating, or any number of other engagements that WORK!  Helping others always works wonders, so if you're reading this and having difficulty dealing with Usher Syndrome, low vision, hearing loss, any other form of disability, disenfranchisement, disaster, or distress, consider these possibilities and SHARE them with others.

This blog is proving therapeutic for me but with the hope that it will perhaps help others too.  Comments welcome!

Thursday, August 18, 2011

What can you see?

I've never asked my daughters this question before!  Since one of them is visiting us this week, I decided to now ask this question and one other.  We were sitting in our office area - she on the floor; DH and I in our respective chairs at our computers.  I turned to look directly at her and said: "Look straight at my nose and tell me what you see."  My elbows were resting on the arms of my chair, and I was about 5' away from her.  She could see my face and my extended elbows, the tops of my knees, and she was aware of the light from the window behind me and the stained glass disk hanging in the window.  She could NOT see my legs below the knees, the floor, the top of my computer cabinet, or anything on the wall above it.

Retinitis Pigmentosa
ONE of the aspects of Usher Syndrome
The limits of her field of vision shocked me.  I'm not really sure why because we knew that she had recently had to give up her driver's license because she could not pass the visual field test.  She "never saw the moving light at all!"  Normal peripheral vision is close to 180 degrees.  Hers is about 30, so we're told.

This prompted my next question - one I have been reluctant to ask, but she willingly answered.  "Are you relieved to no longer be driving?"  I had thought her need to give up driving would be a crisis, a critical life-altering experience to which she would VERY slowly adjust, find her drivers as necessary, and go into some type of immediate - and understandable - depression.  Instead, she has been more pro-active than usual, found people willing to provide services in her home (the hairdresser, the dog groomer, the speech pathologist), found drivers for work, back-up drivers when needed, friends and neighbors to drive her to shop and to attend to daily needs, and SHE IS VASTLY RELIEVED!!!

I had no idea how stressful driving had become for her.  She had for several years given up driving at night and in rain, but honestly, she and I had driven several times in recent years between NC and New England, sharing the driving almost equally.  She never drove in the NY - DC stretch, but who likes that stretch of 95 anyway?  I NEVER felt uncomfortable with her driving or concerned for her or my safety.

Well, all that's behind her now, and she has handled the changes with aplomb.  It has not been a crisis; it has been a gift.  By her own admission, she manages things in her life much better on a deadline and so her driving needs have been addressed and arranged - all before her vacation in NC!  I am immensely proud!

Sunday, August 14, 2011

A "Funny" thing happened at the dentist......

Well, you wouldn't think anything "funny" would happen at the dentist, but indeed something did that offers possible hope for low vision sufferers.  I had broken a filling on a Friday night - great timing!  Fortunately it didn't bother me, but on Monday I called and got an almost immediate appointment.  Wasn't even dressed when I got the call-back.

So I'm sitting in the waiting room reading Our State magazine, a beautiful publication that I vow to subscribe to.  There is an advertisement from an eye specialist/researcher/optometrist in WILMINGTON who has developed treatments for various eye diseases and conditions, primarily macular degeneration.  I am intrigued, but also skeptical.  What legitimate medical person actually advertises?  So I ask the receptionist if she could make me a copy.  When she sees what it is, she says, "Oh, he's my doctor!  And he's wonderful!"  And he's the doctor of the dentist too as well as a number of other staff members.  He had his practice near the dentist's for many years until moving to Wilmington.

I can't wait to get home to check him out on the Internet.  And here is what I found: Dr. Edward Paul has in fact "successfully treated individuals with Macular Degeneration (AMD), Diabetic Retinopathy, Albinism, Stargardt's Disease, Optic Nerve Disorders, Nystagmus, Myopic Degneration, Macular Holes, Retinitis Pigmentosa, PXE, Strokes, and many other eye conditions that cause Low Vision."  And he offers free phone consultations.

I called!  Although he seems to specialize in macular degeneration, he does indeed work with retinitis pigmentosa patients.  They were able to arrange an appointment while Roberta is visiting us next week!  While I am somewhat cynical by nature and hold out no expectations from this consultation, I am very interested to know how he works, what he has to offer, how he's measures his success, and if there is some hope to restore enough vision to enable Roberta to recover and retain her license for a while longer.  We shall see (no pun intended!), and I will report back afterwards.

Oh....and my broken filling was easily repaired - no drilling, no root canal, 20 minutes, and done!  An interesting morning!

Sunday, August 7, 2011


Both daughters have gotten themselves fully engaged right now in the fight against blindness.  Both are participating in the Foundation Fighting Blindness' VisionWalks, one in Greensboro on October 1 and one in Boston on October 29.  They have set up their teams and are looking for team members and supporters, those who'd like to walk (and get their own sponsors) and those who can't be there to walk with them but who would like to make a donation on their behalf.

Andrea's page is here!  Roberta's is here!  You might recognize these photos from their personal pages.

If you are so inclined and would like to donate to a cause that funds research for all degenerative vision disorders, you will find links on their respective pages.  At this time, there is no treatment or cure for Usher Syndrome, and research funding is needed.  Your support, in prayers, thoughts, and deeds, will all be appreciated by our family and so many others who suffer from Usher Syndrome and other deaf/blind issues.

Thank you so much!

Tuesday, August 2, 2011

The SECOND Diagnosis!

Roberta was four months old when we learned that Andrea was hearing impaired.  It was indeed a difficult time.  And I felt immensely alone!  (Absentee husband due to his career change goals and subsequent grad program required long days of travel to Boston and back; when he WAS home, he was holed up in the basement studying!)  We needed to learn quickly how best to promote communication skills in Andrea, and I still had to care for an infant.

And I was desperate to know that our baby had normal hearing!  Testing began almost immediately - at my insistence.  So at 4, 7, and 11 months, her hearing tests were "inconclusive!"  Small comfort there!  The axe fell at 13 months on a day I will never forget (but I do forget the date).  What I remember most was how I reacted once in the car with the two girls.  I completely broke down and sweet Andrea said to me, "Mommy, what's wrong?"  The only way I could make a 4 year old understand was to reply, "Roberta needs to wear hearing aids too!" to which Andrea said, "Oh, goody, now she'll be like me!"  How sweet!  But for a mom, this was devastating news.

So once again, thanks to the Willie Ross School for the Deaf in Longmeadow, MA, we received training in assisting our children with language acquisition, speech and articulation through play, and other activities to encourage and enhance communication.  Willie Ross was an oral communication school for the deaf, so we were naturally encouraged to teach our children the tools for oral language, rather than signing.  What did we know?  N O T H I N G !!!!

But as preciously stated, this decision turned out to be the best one for our girls - they will tell you so today.  I'm not sure how that will play out in the future, if/when they are no longer able to see well enough to read lips, but it was correct then and still is.

The early years were tough!  When Andrea was five and Roberta 2.5, we moved from MA to RI - where my husband finally found a job in his new field of hospital administration.  Three+ years of little income (I substitute taught on occasion) were fraught with tension of newly discovered child disability, absentee husband, career change, and now a move to a state where we had no family, no friends, no ties at all.

But the move to Cranston, RI was a blessing!  We landed in a cute little neighborhood with lots of kids and friendly neighbors who became fast friends over the years.  Children of all ages played together on the street, in our homes, and the families socialized frequently.  It was safe and fun for all of us!  Although there was a neighborhood school, where Andrea attended kindergarten for a few months, services for the hearing impaired were provided at another local school, so that was arranged for her first grade.  Roberta went to the local YMCA for preschool.  Mrs. Jean Wilson was the invaluable teacher of the deaf through most of the girls' elementary school years - in a pull-out program - for speech and language and as liaison between us and the teachers.  It was wonderful!  And she was the mom-substitute for me.  I could call her at any time with questions, concerns, etc.  And Mrs. Hoffman was Roberta's pre-school teacher for three years.  She was another godsend!

Mrs. Wilson passed away when Roberta was still in her care in elementary school - a sudden and very untimely death.  We all mourned her passing forever - since the replacement left something to be desired, and neither the girls nor I liked her very much.  Thanks to Jean Wilson, both girls were quite independent and by that time needed less assistance and instruction.  Besides....both girls at this point HATED both the replacement and the very obvious attention and impression being taken out of class made on their classmates.  So while IEPs were always in place for both of them through their public schooling, they availed themselves less and less, and that worked!

The constant interaction with neighborhood kids, who accepted them wholly and helped them in every way, was a bonus.  I am forever grateful to Mary Joan and Earl, Linda and Joe, and Marcia and Joe for their tireless support of our family.  And the move to RI brought me to a mother's group at the RI School for the Deaf that changed my life, even though the girls were never schooled there.

To be continued.......!

Wednesday, July 27, 2011

In the News.....!

In today's local Wilmington NC paper, Star News, there is an interesting article that speaks to the long-standing issue of oral communication versus American Sign Language (ASL) for the deaf and hearing-impaired.  I couldn't find a link to the story in our paper, but here is the link from another region's newspaper.

As parents of hearing impaired children who are now grown and in middle age (WOW! That makes me OLD!!!), we had to make a decision many years ago as to whether or not we wanted them to sign or learn as much oral language as possible.  We decided they would live in the hearing world.  For us, it never was a huge decision, but I realize now how radically different their lives would be - and ours as well - had we made the decision to education them in a school for the deaf.  We knew next to nothing about deafness and hearing loss; we had no idea of the world of differences between deaf culture and hearing or of the cultural clashes that exist.  It was years later, when I was in a Masters program in Speech Pathology (never finished!) while researching and writing extensively on the psychology of deafness, that I gained insight into this intense rift in the hearing-impaired community.  And that research convinced me that we had indeed made the right decision.

It obviously turned out to be a correct decision for OUR children - who were not deaf at birth, but rather mild to moderately hearing-impaired at the time of their diagnoses.  We later learned of the progressive nature of their hearing loss, and then much later of the syndromic effect of Usher.  I believe that some children need the services of a school for the deaf, need to learn to sign and use multi-modal means to communicate - but not just with the deaf world.  I believe that all deaf and hearing-impaired persons must learn to exist in society, be fulfilled by their educations, careers, family life, and social interactions.  My children today thank us and would tell you that the decision we made so many years ago has worked for them.

That is not to say that our decision is the right one for everyone.  It is not my intention to fuel the fire here.  I would be intensely opposed to the abolishment of schools for the deaf.  Mainstream education is not for all handicapped individuals; there is much to be gained from deaf education.  But I do believe that such schools, where ASL is taught exclusively - to the exception of oral communication training - do little to bring deaf individuals into the society at large.

Do I wish my children had learned to sign in addition to their oral skills?  Now I do!  Because now I know that they might need it as they struggle more and more with their vision AND hearing.  Roberta studied it in college (actually met her former professor at the Usher Syndrome Family Conference earlier this month!), but she has never used it either personally or professionally.  As a former foreign language teacher, I know that disuse leads to no use!  Can they learn it now?  Of course, if motivated to do so.  We shall see.....!

Monday, July 25, 2011

The FIRST Diagnosis of Hearing Impairment! The Early Years!

Please excuse the ramblings here.  While I've often thought of writing about life with two hearing-impaired children, I hadn't quite planned to do it at this point in my life.  But I guess it's never knows when it might be too late.  Those early days are a bit of a blur - also it was a LONG time ago!

What do new mothers know around child-rearing?  Not a whole lot!  There is no manual; there is no prep course.  My mother did not live nearby; my MIL did but was not a huge part of the equation.  I know now that MILS of young mothers often feel uncomfortable "interfering" with their son's wives.  Nonetheless, it was my MIL who first suspected that Andrea was not hearing properly - although she was speaking - just not articulating well and her language at three was not building as rapidly as expected.  My husband had been a delayed talker, so no one had seemed terribly concerned, and my pediatrician poo-pooed the concern.  Mothers seem to have a sense about problems in their children - regardless.  But my MIL put the bug in my ear (pun intended), and so with little (naive) trepidation, off we went to the audiologist!

Crushing news!  MIL was right!  Andrea did indeed have moderate sensorineural bilateral hearing loss.  OMG!!!  What the heck did THAT mean?  I was in shock, confused, frightened, devastated, and ALONE!  Any new mother who receives a diagnosis of child disability of any sort MUST feel the same.  I was not at all prepared for this, didn't want it, and didn't have a clue what to do!  And I am a DO-ER!!!!

Remember, this was 1971 - no Internet, no easy access to information, no immediate source of help, few resources to pursue.  Thanks to the Willie Ross School for the Deaf in Longmeadow, MA, I began the journey.  (I actually thought the school could not possibly still be in existence, but just Googled and found it!)  They were the only source of info, providing written materials, parent advising, in-home speech and language assistance for parents/child, pre-school classes, and a connection to others facing the same challenges.  It was newly established, and at the time they focused on strictly oral communication.  With their guidance, we determined that Andrea would attend their own integrated pre-school as well as another local program where she was the only hearing-impaired child.

Whether by personality or disability, however, she was always socially reserved, shy, and adjusted slowly to new situations.  She began to make huge strides in communication and social skills, and as a result of these experiences, we decided that she would continue in public school, a decision made early on and one that pre-determined the course of her and her sister's education.  They both lived in the hearing world, never signed, and proceeded through public schools and college with few disability resources.

Since Roberta was already born at the time of Andrea's diagnosis, our focus became split: teaching ourselves how to best prepare Andrea for life and finding out if Roberta shared what was apparently a hereditary trait.  But we COULDN'T have TWO with the same disability!

That will be the focus of my next post.  But I recall that at the time of this initial diagnosis, my husband was going to school full-time in Boston for another degree, changing careers, and largely unavailable to me and the issues at hand.  He had his own struggles with commuting to Boston, attending classes, studying, writing papers, etc.  He had little time to provide the comfort, share my distress, learn along with me, and be the support that I really needed.  Many marriages would not have survived!  I'm proud to say that in September, we will celebrate our 45th anniversary - TOGETHER!!!

To be continued......

Friday, July 22, 2011

Comments may now be easily published!

Sorry to those who have tried to post comments on our blog.  I needed to adjust the settings - now DONE!!!  If you wish to add a comment to any of the previous posts - or this one - feel free to do so.  All comments are welcome!

Louise Giordano

Did you know that the new Mrs. America has RP?

April Lufriu - Mrs. America 2011
This could be the boost we need to get the word out!  Mrs. America 2011, April Lufriu from Tampa Bay, FL, has early signs of retinitis pigmentosa (RP), as do two of her children.  This article, Relishing the Crown, in the Spring 2011 edition of In Focus from the Foundation Fighting Blindness, is an interview with April about her win and about her advocacy work for the visually impaired.  She is the president of the Foundation Fighting Blindness' Tampa Bay Chapter.

Retinitis pigmentosa is just one half of the Usher Synrome equation.  But it is the vision part - or the loss of vision, actually - that seems to be the far greater disability to manage for Usher patients.  My daughters always claim to have a handle on their hearing loss and cope very well in their personal and professional lives.  But the vision changes and the challenges that imposes is something else again.

Any awareness, funding, and research on RP will help with the fight against Usher Syndrome, so I am thrilled with this news of April's winning platform.  Congratulations to April and her family!


Thursday, July 21, 2011

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! 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.

Wednesday, July 20, 2011

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.......!