Archive for April, 2011

Dinora’s First Miracle

We adopted Dinora from Guatemala at the age of 6 weeks, and I was so thrilled to have a daughter!!!  She came with a variety of diseases common in s 3rd World Country, scabies, intestinal parasites and malnutrition.  But we loved her and fed her and she blossomed into an adorable baby with big black eyes and shiny black hair.

At the age of six months, it became apparent that Dinora was deaf.  She had not yet started to babble like other babies her age, but she also did not turn to her name, or looked at the dog when she barked, or seem to notice the footsteps of me coming into her bedroom.  She would be laying there awake when I walked in, (and, believe me, I am not light on my fight.)  When she finally would see me, she would startle.  She had not heard me.  The day I knew it for sure was a day she was sitting next to me on the floor while I was doing the dishes.  I accidentally dropped a huge lobster pot I was cleaning and it made a horrendous clang on the floor.  Dinora happily sat there playing, her back to the pan.  She did not startle.  She did not cry.  She did not hear it.

We then made the rounds of the doctors.  She flunked regular hearing tests, and had a brain stem evoked response test.  Her brain did not respond up to 90 decibels.  The doctor informed me that she was severely hearing impaired and that we would try hearing aids to maximize her hearing, although they would not be strong enough for her to hear normally.  They took the impressions for her ear molds.

That evening, our family went for a pre-Christmas visit to a shrine beautifully decorated with Christmas lights.  I was feeling sorry for myself.  I had a two year old son who was legally blind, and now I had an infant daughter who was deaf.

There was a statue of Our Lady of Lourdes surrounded by prayer water and many large candles.  There was also a large display of crutches and wheelchairs of people who had been healed by her.  I helped my son, Francis, who was 2 1/2 years old, light a candle. Because it was almost Christmas, and the only candles he had seen were on a birthday cake, he merrily sang “Happy Birthday Dear Jesus”.  I remember saying a non-de-script prayer, still upset that Dinora was deaf.  I still thanked God,  but was not quite as enthusiastic as usual.

The next morning, the dog barked and Dinora woke up!  I thought it was a coincidence until I started to walk into her room and she turned to smile at me. She had heard my footsteps!  I started talking to her and she started babbling back.  Only a day earlier she had been fitted with ear molds for hearing aids!  I excitedly called the doctor, who agreed to see her that day.  Her hearing was tested and it was normal!  Neither I nor the doctor could believe it.  He said in his 29 years as an ear doctor he had never seen anything like it.  He told me that it had to be an “Christmas miracle from Above”.  The visit the night before to the shrine came to mind.  A miracle HAD occurred, and I was  embarrassed because I had not thanked God more enthusiastically the night before. He had granted me a miracle even though I did not ask for one.

Dinora is now 25 years old and has had perfect hearing ever since that day!

My Brother Says Goodbye…

I took my brother who is developmentally delayed, legally blind, autistic, profoundly deaf and schizophrenic to visit our mom for the last time before she passes away.  I was worried about how it would go.  We walked into her room and she lay in bed.  She seemed to perk up a little when she was told Curtis, her beloved son, was there to visit with her.  She didn’t perk up enough to open her eyes, but she did start to talk, albeit mostly nonsense.  Curtis held her hand and rubbed her back.  He was talking to her, and because he could not hear, he did not realize that she was not really talking to him.  He was talking about himself, of course.  Was there a restaurant around the nursing home where I could take him to eat?  Did they have pie?  He then went and got her a soda from the soda machine and opened it for her.  Soda is Curtis’ most prized item.  He gave it to her, saying he wanted to do his best to make her last days better.  He then told her she was lucky because she had the pleasure of his visit because he was good company and he rubbed her back.  After an hour or so, I had him say good bye.  Not being a demonstrative person, he did not know how to hug.  I felt it was important for him to hug her and kiss her good bye, so I helped position him so they could hug.  It would have been laughable under any other circumstances.  He was stiff like a robot and clearly was not comfortable showing affection.  So he took her hand and shook it, and said “It has been nice to know you.  Let me know when your funeral is because I might want to attend!”

On the way home, Curtis was quiet for a while.  He said “Something has been missing all week and I didn’t know what it was.  Now I do.  I was afraid I would miss saying good- bye to my mother.  Today I was able to give her a soda and rub her back,” (2 things she had always done for him when he was sick.)   “I feel better now.”  This was such a profound statement coming from someone who usually did not think rationally.  Of course, true to his character, he asked to stop for pie.

The Girl who said she was a Boy

Marie, who is profoundly deaf, came to live with us at the age of 7 years old.  At first she appeared to be your typical “tom boy”, but then she began to exhibit symptoms of being something more…symptoms of being an actual boy.  Quite simply, she TOLD me she was a boy.  She would only wear boy clothes, (including boy’s underwear.)  She refused to use the Ladies Rest Room so we found the family and unisex restrooms if she had to go to the bathroom in public.  She begged me to let her get her hair cut short, but her birth mother’s rights had not yet been terminated and she would not give permission for Marie to get a haircut, so Marie would pull it up in a pony tail on top of her head and wear a baseball cap everywhere.  She looked like a boy and she acted like a boy.  She did not want me to tell people she was my foster daughter, insisting I tell them she was my foster son.  Swimming at the public pool was problematic because they did not allow t-shirts.  Because she wore boys bathing trunks, she always wore a shirt.  The lifeguards always told her she couldn’t swim unless she took her t-shirt off.  I obtained a letter from her doctor indicating due to her “disability” she needed to wear her t-shirt while swimming.  I still had to argue with each new lifeguard that there was a letter on file which indicated she was allowed to wear a t-shirt as a reasonable accommodation under the Americans with Disabilities Act.

Because Marie was deaf, most people did not know the extent of her insistence that she was a boy.  She did not hear me introduce her as my foster daughter, and the use of male/female language did not reach her ears, so in some ways it was easier to deal with socially.  She knew she was a “boy”, she looked like a boy, so she assumed everyone thought she was a boy.  Somehow the fact that her name was Marie was feminine escaped her, but that was because as a seven year old who was deaf, I doubt she knew the context of male/female names.  Difficulties did arise when relatives and friends gave her “girl” presents or try to give her “girl” clothes.  She would look at them as though they were crazy.  Didn’t they KNOW she was a BOY!!!

I accepted Marie for who she was.  She was allowed to behave in the manner in which she was comfortable, and if the only problem was finding a unisex bathroom, then we were lucky.

At her ten year old visit with her family practitioner, she blurted out to him that she was a boy and that she did not have the right part. She begged him to “sew a penis” on her.  He was very comforting and reassuring, and said she was fine the way she was for now and when she was older she could make that decision.  He told her that things might change in the meantime.  She begged and cried and said she didn’t want to wait, but he said she was too young to make that decision.

Marie continued to insist she was a boy, and when she was adopted she was allowed to get a short haircut.  She was very adorable, boy or girl, with short cropped blonde hair and gorgeous big blue eyes.

By the time she was eleven, Marie had become accustomed to our family and she felt supported and accepted.  She also felt safe.  She and I had started to bond, (something which she was reluctant to do because she had promised her birth mom she would not love me.)  I bought a book for girls on puberty, “The Care and Keeping of You”.  Knowing she thought she was a boy, I was cautious in bringing this subject up.  Reading this book, however, had an amazing effect on her.  She was excited.  She was thrilled.  We read if from cover to cover until the cover was worn out.  She would bring it out to show anyone who visited, (male of female.)  We had to go to the store to buy sanitary napkins, and she insisted on buying 10 packages “just in case”.  She asked many questions and I answered them as straightforward as I could.  She shyly admitted to me that she was happy to be a girl.  She told me she only SAID she was a boy because men “hurt girls” and she didn’t want to be hurt any more. She said “the men” never hurt her brother, so she decided if she was a boy she was safe. Marie did not realize the huge significance of this admission.  She had finally lived with us long enough so she felt safe to become the girl she really was.


 

 

Link to my book

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

 

Living with Dissociative Identity Disorder

My 15 year old son, Angel, was diagnosed with ADHD, (inability to pay attention in class, his mind “wandered”, he couldn’t keep on the topic,) Reactive Attachment Disorder, (inability to bond with parents,) OCD (obsessed with certain rituals and items,) Conduct Disorder (uncontrollable behavior at times,) severe Depression, (where he would curl up in a ball in his bed and be unable to do anything,) and Post Traumatic Stress Disorder, (violent reactions to certain memories or thoughts.)  These disorders, and a severe memory impairment, all turned out to be symptoms of another, more insidious disorder, Dissociative Identity Disorder, (previously known as Multiple Personality Disorder.)  All of his diagnosed symptoms were manifestations of different “parts” of his psyche, all developed in early childhood to allow him to survive horrific child abuse.  Angel considers himself a combination of his “parts”, a “we”.  It is normal for him, and we have lived with it every day since he has lived with us at the age of four.  He has received incredible special education services which enable him to spend most days in a regular 10th grade classroom, but also allow him to spend time in a resource room if he feels the need.  All assignments are written down for him and all homework is done before he leaves school.  (This solves the memory problem.) 

            Angel finds it helpful to write his feelings down sometimes, and I wanted to share with you 2 separate essays he wrote:

 

            “”Wah! Wah! Wah”went the baby as he cried.  People walked by and ignored him.  “Wah! Wah! Wah!” he cried some more.  All he could hear were big, angry footsteps coming closer and closer.  A woman poked her head in the crib.  “SHUT THE HELL UP!”  she screamed at the top of her lungs.  This scared the baby more and he cried more.  The woman started hitting the baby all over.  The crying baby woke up the man who was sleeping nearby.  “Shut that kid up!” he screamed.  The man got up and started to beat the baby.  The baby left consciousness and a stranger took over his brain.  The baby did not remember anything after that.”

 

 

            “Angel is a fifteen year old boy who has a rare disability.  His disability is called Dissociative Identity Disorder, or DID for short.  A lot of times, he does things and does not remember doing them.  Most of the time he has no knowledge of what a certain part did or said.  It is basically like having octuplets  in your head.  People ask the wrong octuplet a question and he doesn’t know the answer, so he has to ask inside to see who knows the answer or who remembers.  This effects him in a lot of ways.  The most important way is with academics.  Most of his parts are smart in different subjects, but the right one has to go to the right class.  If a part goes who doesn’t know the answers, then Angel will flunk the whole test even though one part knows the answers good.  This is the most frustrating thing about living with parts!  Other than that, it is most of the time good because Angel is never lonely in his brain.  He has some funny parts that keep him laughing.  He has a baby part that they all give a lot of love to because he wasn’t loved when he was a baby. He also has an angry part that they don’t know.  This part scares them, so they try to pretend he doesn’t exist.”

             This may seem extraordinary, but it is just an ordinary part of Angel’s life.  No big deal…

To Church Again, To Church Again!

I have started to attend Church again! I used to attend regularly, then often, then sporadically, rarely and almost never. I have many reasons for why I did not attend.  For a while, I was caring for a terminally ill mother, and, several months later, a terminally ill brother.  Instead of taking that hour off to attend church to feel nourished by God, I chose to sit woefully by their sides.  After they passed away, I was depressed and I spent a lot of time sleeping. I would chose to sleep that extra hour on Sundays, trying to replenish a body already full after 9 hours of sleep.  When I started to attend church again, I found I was replenishing my spirit instead.

Instead of attending church, I would sit with my cup of tea and read the newspaper with all of its gloom and doom, all of which I could do nothing about.  When I choose to attend church, I found a wealth of opportunities to actually do something for the betterment of others; toiletries and toothbrushes were collected for the poor, non-perishable food items were collected for the food pantry, baked goods were requested, along with a whole host of opportunities to actually take part in the worship itself as ushers, readers, choir members and so forth.  Instead of feeling helpless about the world, I was reinvigorated to join in to help, to do something concrete to help others.

Often, instead of going to church, I would be on my computer, reading e-mails from strangers, clicking on their messages as though they were really important. Instead, I found the really important messages in church, direct e-mails from Christ.  I don’t know why I never made the connection before.

When I entered the church that first morning back to church, smiles met me everywhere. As soon as I sat down in the pew prior, I felt myself begin to relax.  The flowers were beautiful; the altar was inviting, and the choir inspirational.  I melted with a feeling of total acceptance and peace, and I could feel my every day stress wilting away.

I regretted having put church on the back burner in my life.  My two oldest children who had attended Sunday school, made their first communion and confirmation, participated in the youth group and taught Sunday school, are now successful adults.  They have spirituality and compassion for others, traits instilled in them through their participation in the church. My younger children who have not had the benefit of participation at church are floundering as teenagers.  There has been a huge difference because I have not made a concerted effort for them to get to know the word of God.

I know many people have really good reasons for not being able to attend church.  However, if you are like me and just found yourself drifting away, please reconsider your participation in your church. I consider myself a lost lamb found by Jesus.  I have  found peace, and in this hectic, frantic world, peace is a good thing!

The Baptism from HELL

I don’t mean to be blasphemes, but I am sure that all you parents out there with “difficult” children can understand what kind of hell we live with from time to time.  Most of the time raising children is heavenly, or at least like purgatory. However,sometimes there are those moments when it is just plain hell!

Our son, Steven, was adopted at the age of 3 after living with us since birth.  He was born addicted to heroin and cocaine, to a mom who was an alcoholic and, (GASP) cigarette smoker.  Although we loved his cute little face very much, the rest of him left much to be desired.  He was hypersensitive to sound, touch, smell, noise and any little thing that altered the peace in his little world.  Even as a 6 month old he would bang his head on the highchair if he was “stressed”.  He needed a strictly consistent schedule with no tags in his shirts and no loud noise from the tv.  We altered our life to fit his needs and things were fine, for the most part.

Then came his Baptism day.  First off, it was a change in his schedule, something his 3 year old body did NOT appreciate.  THEN, he had to get dressed up.  I remember thinking he’d never wear a suit and tie, or even a tie for that matter, so I managed to buy a nice pants/sweater outfit.  Unaccustomed to wearing sweaters, his body squirmed in this outfit.  Our church had arranged for a private ceremony, understanding Steven would not be able to be baptized during a regular church service.  We used the little chapel so as to cut down on the anxiety he would feel in the huge church.  His dad carried him to the altar with Steven’s head buried in his chest.  My husband, myself, our older son Francis and daughter Dinora stood by with Pastor Lorraine to begin the baptism.  Steven looked up and saw the baptismal water.  “OOOOOOOH NO!!!!!!”  he screeched.  “You’re not going to put that water on ME!!!!!!”  (He also had a fear of water I’d forgotten to mention…)  He jumped down from my husband’s arms, crawled on the ground, and crawled into the first dark, quiet place he could find…under Pastor Lorraine’s vestments!  There he was, under her vestments which were over her dress…I was MORTIFIED, (thus the “HELL” part!)  She, however, as the parent of three rambunctious kids, thought it was funny.  (God bless her!!)  She felt down for where his head was and she calmly proceeded with the baptism.  (Fortunately, you could see his head clearly outlined in her vestments.)  She did the whole ceremony with him completely covered.  I had a camera to document this momentous occasion, but was at loss of what to take a picture of!  When is it over, his dad gently dragged him out and home we went.  For any other child, a celebration would have been in order, but for Steven, it was home to his usual routine.  Same day as any other day.

PS.  I obviously didn’t learn from this experience as we attempted first communion for him.  At the age of 12, he met with our pastor for one-on-one communion classes as he was unable to participate in the standard classes.   He was then to join the other children on “First Communion Day”.  When the pastor called out his name, he promptly crawled underneath the pew, and curled into a tight little ball, where he stayed for the rest of the service…

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