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 3^rd 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!

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I Don’t Think Alligators Kiss

Yesterday my husband, in a good mood, came into the kitchen, swooped me backwards, and gave me a passionate kiss.  When we had finished, I noticed my 13 year old adopted daughter standing there, mouth gaping open, eyes wide, with a shocked look on her face.  “What was THAT????’ she asked (in American Sign Language.)  “A kiss,” I told her. “No, no”, she signed, “a kiss is a little peck on the lips” she said as she came over and demonstrated one on the dog.  “That is the way you kiss when you really love someone, your husband” I said.  “WOW!  How did you LEARN that?  Can you show ME!?!?!” she signed.   “You don’t learn it, you just feel it.  It is natural when you love someone,” I explained to her.  “I’m going to wait until I’m 17 to do that,” she signed back, and I said a silent prayer to myself that I should be so lucky for her to wait that long!  I laughed inwardly at her innocence, this worldly child who knew the mechanics of sex more than anyone her age should have to know,  (the reason of which is a discussion better delegated to a more serious blog entry.)  But I doubt she ever saw anyone in love before, and she definitely had never seen anyone kiss passionately, which really surprised me.  The more I thought about it, though, I realized she hadn’t been exposed to it in her young life and the only other way she might know would be from watching television.  Because of her deafness,  she has a low reading level and is not able to understand the captioning enough to get interested in a romantic story or one of the more mature television shows which are all over the television today.  Her favorite tv station is the Animal Planet where great stories are told and no captioning is needed. She knows all about the life cycles of animals, insects and reptiles, including their different mating rituals, but, as preparation for real life, I’m sure she never saw alligators kiss like that!

A Miracle that Saved My Life (which you’d only understand if you had a teenage daughter.)

In her senior year in high school, Dinora was scheduled to go on a trip to Greece with her class.  When I wrote to the Department of Health to get a copy of her (adoption) birth certificate for her passport, we were mortified to learn that the birth date on the birth certificate and the birth date on the other legal documents were was different!  Thinking it was a simple mistake at the Department of Vital Statistics, I called.  “No,” they indicated, “That was the date that the court gave us at the time of the adoption.  The only way to change it was to go back to court.”  I was horrified and sick to my stomach. Visions of deportation bounced in my head.  Dinora, of course, was furious at me.  Taking a chance, I sent in the Passport photos, a copy of the adoption certificate, (which had no birth date on it, only the adoption date.) and a copy of Dinora’s Guatemalan birth certificate in Spanish under her birth name.  I prayed that although it was unconventional, it would be enough evidence for a passport.  Dinora was scheduled to leave for Greece on June 5.  By May 28 the passport had still not arrived.  Dinora was confident it would come, as she is confident everything comes to her.  I was not confident at all, and dreaded the day I’d have to face Dinora’s wrath because she couldn’t go to Greece.

Around this same time was Dinora’s senior prom.  She had chosen a dress several weeks prior, and I repeatedly asked her to try it on so it could be hemmed. Dinora, who was only 4 foot 11 inches, repeatedly said it would be “fine” because she was going to wear “heals”. She  was a busy high schooler and didn’t have the time to try it on. On the morning of the prom, Dinora tried it on before school and came crying to me that the dress was way too long.  It was a beautiful, silky cream color, and I am not at all domestic, so I didn’t have a clue what to do to hem it.  I ran to the sewing store and bought hemming tape.  “I can TAPE it up!”  I thought excitedly. It made perfect sense!  Nice and easy!  I got out the iron and began to iron on the tape.  The problem was twofold…the dress had a flare bottom and the hemming came out lumpy and crooked, and also the heat from the iron was melting the silk in the dress!  It looked ruined and AWFUL!!!  I promptly put the dress down, ran into the bathroom, and threw up.  Several times.  “Please, God,” I prayed, “I’ve never asked you for anything.”  I threw up again “Please, please, please  I am on my knees here, please help me out here.  I am over my head with this problem.”  I knew if ever I needed a miracle, this was it!  Still shaking, I got an idea. I ran to the phone book and looked up tailors.  There was one about a mile away, so I gathered the dress up and rushed to the tailor.  “I need you to fix this!” I almost screamed as I burst into the store.  The tailor took one look at it and said “But this dress is ruined.  See, here, where you’ve scorched the fabric?”     “PLEASE PLEASE PLEASE help me!” I begged through tears.  He said he would try but could promise nothing.  He could have it ready by the following Friday.  “NO!” I screamed like a wild woman, “I need it by 4:00 pm this afternoon!”  The man was shocked.  “I’ll pay any amount of money” I continued to beg.  Reluctantly, the gentleman agreed and I burst into more tears of hopeful relief.  I drove home to wait until 4:00, and when I got home and opened the mailbox, there was Dinora’s passport for her trip to Greece!  I went back to get the dress just in the nick of time for Dinora to get dressed for the prom. It was a miracle, (and for only a charge of $5!) The dress was hemmed and in perfect condition!  It was GORGEOUS!  He pointed out a few minor spots in the back of the dress where the material was scorched, but he said most of the bad spots he was able to hide under the hem.  This was a TRUE miracle which I would appreciate forever.  Of course Dinora did not have a clue what I went through for both her passport and her prom dress.  She was appreciative, of course, as was I!!!

Random Thoughts on Life with Children with Disabilities

Thoughts Regarding Life with Several Children with Disabilities

• When you have several people in your family, (ours has 6 at home,) put names on toothbrushes.  They are only available in so many colors…
• Taking multiple pills is easier if they are placed in a little plastic cup.  Using a hand is not always the safest way to guarantee they will all get into the mouth. (Before I discovered this, I was finding pills here, there and everywhere, especially between the couch cushions.)
• Keep extra pills and a bottle of water in your car in case you are delayed and a child would miss a dose.
• Even though it might be easier, do not schedule doctor’s appointments at the same time for more than one child.  I have learned that there is a direct correlation between the difficulties to be discussed about one child with the doctor and the misbehavior of the other child.  I also usually take the child with the appointment out to eat afterwards for some “quality time”.  This seems to encourage good behavior at the doctor’s.
• Don’t stress out over things that are unimportant in the scheme of things.  I try to clean house, but rarely have time to do a great job.  I don’t care.  I try to have a nice, family meal every night, but only succeed three or four nights a week.  I don’t care.  I try to dress my children nicely for the holidays, but they invariably pull the new clothes off to wear more comfortable ones.  I don’t care.  The house is not filthy and neither are the kids, and the kids are not starving or overweight.  My expectations are low so I am always pleased to meet them.  If I am able to exceed my expectations, I am thrilled beyond belief.
• Find time for yourself and your significant other (if you have one.)  This relationship must be nurtured if he/she is expected to nurture the children.  Stressed out parents affect patience levels.  My children have always had a bedtime of 9:00 pm regardless of age.  They can watch tv, talk on their cell phones, read or do schoolwork, but quiet time in our house is observed at 9:00 pm.  This guarantees quiet time for the parents.
• Take a few days off without the children.  Again, the parental relationship needs to be primary.  The statistics of divorce among families with children with disabilities is staggering.  I work hard at not being that statistic.  Going away without the children takes a great deal of planning, but the reward is a stress free weekend.  With my family, this is also costly because I need to arrange and pay for supervision for 3 separate children.  Again, it is less costly than divorce.
• I make sure the children pick up the dog poop in the backyard BEFORE I rake the leaves.  (I didn’t do this once and boy was I sorry!!!)
• I drive a mini-van with 4 bucket seats and a back bench seats.  This leaves 3 separate bucket seats so the children don’t have to sit directly next to each other and each one has a window seat. Rides have been quieter since I bought this car.
• We try to live within our means financially.  No costly trips to restaurants.  No plays, concerts or other costly entertainment.  I buy clothes at 2^nd hand stores and grocery store brand food. It is stressful enough worrying about the children without adding financial worry.
• You cannot yell at a deaf child.  They will just shut their eyes and they cannot see you signing the angry words!

I find the humor and happiness in life:  watching my daughter  who is deaf in her dance class with a big grin on her face,  joking with my son who has dissociative identity disorder that he needs to check with “his people” before he makes a decision,  watching my 17 year old son with Aspergers when he is holding a wriggling snake and describing everything you’d ever want to know about it, and watching my husband cook supper with my daughter.  She used to be a very picky eater, but now she eats everything she helps cook.  Who knew?

The Turtle was TTTTTHHHHHHIIIIIIISSSSSSS Big! (Another Fish Story)

My son, Steven, has autism, later diagnosed as Asperger’s syndrome.  He has always had accompanying obsessive compulsive disorder, attention deficit hyperactivity disorder and sensory integration deficit.  Our house is on a little lake, and one of Steven’s quirks is that he will not touch the water.  This is very ironic because his Asperger’s obsession is with reptiles, turtles and fish.  He often spends the entire day in our backyard catching fish and turtles.  Often, he takes the canoe out and paddle around, trolling for fish as he goes. He will never step in the water, though.

Our family has many get-togethers in our backyard.  With a paddleboat, canoe, kayak, rowboat, sailboat and raft, there is always plenty for the children to do.  While Steven likes to play on the raft with his friends, he always paddles out there in the kayak, again never putting a toe in the water.  He would often scare his friends, siblings and cousins with tales of HUGE turtles which lurk under the surface.

One afternoon a few years ago, while I was taking a nap, (one of my favorite activities,) I heard Steven screaming at the top of his lungs.  I’d never heard him scream like that before.  (I’d only heard tantrum screaming, nothing like this blood curdling sound.)  I leapt up out of bed and ran outside to see what I assumed would be a tragedy awaiting me.  There was Steven, in the canoe, holding his very large fish net which he often used to catch fish.  In the bottom of the canoe were 2 of the largest turtles I have ever seen anywhere!!!  They were more than 2 1/2 feet across!  He was standing on the seat screaming and I started screaming also.  I learned that he had caught them in his net while they were “stuck together” (ie mating.)  I’m looking at these 2 huge snapping turtles thinking there is no way they belong in our little lake…they should be in a zoo somewhere!  While I am thinking, one of the turtles casually climbs over the side of the canoe and falls back into the water!  After much wariness, but a sense of what would be the right thing to do, I suggest Steven flip the other one back into the water with the oar.  As he tries to do so, the turtle snaps at the oar breaking it, but not before gaining enough momentum to slip over the side of the canoe into the water.  Steven looked at me and said “I  TOLD you there were big turtles in the lake!”  This sighting definitely put a crimp on swimming for the rest of the summer…

As a follow up to this story, last summer one of the huge turtles was found dead on our beach.  Its legs and head were bloated and it looked awful.  I called the city’s animal rescue league and asked them to come get the dead turtle.  The woman who answered the phone obviously thought I was demented.  “Just THROW it back into the LAKE, ” she said several times.  I told her several times it was too BIG to just throw back into the lake, and she reluctantly agreed to send “someone” out to take a look.   The gentleman came in a city pick=up truck.  He ambled out of the truck in our front yard, put on gloves, and swaggered into our backyard, anxious to see this “huge turtle.”  As he got closer, he let out a loud “HOLY SH*T!”  Then he called for back-up. It took 2 men to carry this thing and plop it in the back of the pick-up truck!

Ever since first finding the turtles, for some odd reason, the children are not so anxious to go swimming…

Global Warming?

I completely understand why older people move to southern states when they retire. Winters are COLD!  My fingers get chilled just thinking about it.

I do not enjoy the winters as I used to.  I remember pre-children when my husband and I would go skiing.  One day it was 10 degrees below zero. We were all excited it was so cold because that meant that the ski slopes would not be as crowded and we would not have to wait in line for the chairlift.  We bundled up with layer upon layer of warm clothing and we skied all day.  At one point, we stopped at the top of the mountain and we could see all around the surrounding area.  With the sun blazing down on the shiny snow, we saw snowcapped mountains in the distance, little villages, frozen lakes and the ant specks that were cars, and I was overcome with awe for God and nature.  It’s a good thing this memory is still crisp in my mind because these days, you’d never get me on top of a cold, frigid mountain again!

The children, of course, have always loved winter.  My oldest son, Francis, still skies with his father from time to time, plus he skies with friends in the mountains of California.  Although he is legally blind, he is a ” black diamond slope” skier.  The only problem with that is he needs a “black diamond slope” guide!  My heart was always in my throat when he skied because I was petrified he’d hit a tree.  (This was during the time when Sonny Bono and one the Kennedy boys died after hitting a tree when skiing.)  While away at college in England, he regularly skied in the French Alps.  Knowing how frightened I am, he sent a picture of him at the top of the mountain.  “You’d love this, mom” he wrote, “No trees.”  I pictured him happily skiing down the bare mountain not a tree in sight to run into.  It wasn’t until much later that someone broke my happy bubble by informing me that he could be buried by an AVALANCHE!  Boy, this being a mom is tough!

My husband received an old snowmobile as a “gift” from a friend.  One day, he was riding it in our large backyard with my son Steven sitting in the front of him and he decided to let him drive.  Excitedly, Steven turned the handlebars to give it gas.  The snowmobile took off in a lurch and my husband was thrown from the back of it in an amazing double somersault.  Steven and the snowmobile were headed right for the shed.  His life flashed before my eyes and I thought “This is what it feels like to see your child die.”   Fortunately, unbeknownst to me, if you let up on the handlebars, the machine stops, and this is exactly what Steven did.  He turned around and noticed his father was missing and he let go of the handlebars.  He stopped within a foot of the shed. It took a while for my heart to start beating again. My husband did the only smart thing a father could do…he sold that snowmobile and he bought 2 news ones so we could go snowmobiling as a family!  I had to go along as a driver in order for the whole family to participate. If you have not ridden a snowmobile, I can only describe it as riding a motorcycle on skis.  I had never ridden a motorcycle and I was very nervous. I would creep along at 5-10 miles per hour, much to my husband’s dismay.  To make matters worse, my husband did not choose the nice, empty, safe fields to ride in.  NOOOOOO!  He chose the skinny, trees whipping by your head, narrow snowmobile paths with TRAFFIC COMING IN THE OTHER DIRECTION!  That one day of snowmobiling was the scariest in my life.  There was no turning back and I had to drive.  My hands were shaking, my body was sweating even though it was freezing out, and my imagination had my head being whipped off by a tree branch.  That was the first and last time for me!  My son Angel was riding with me, and he and I decided we liked to go shopping much more than snowmobiling and everyone was happier with this decision.

About 16 years ago, when it became obvious that Steven had some type of Autism and could not tolerate vacations in hotels, we bought a little house in New Hampshire for vacations.  The children always loved playing outside in the snow.  At the end of our driveway was an 8 foot tall pile of snow made by the snowplow which the kids had fun sliding down.  At one point, Steven climbed to the top of the pile and all of a sudden he disappeared!  He had fallen deep into the snow pile! Another heart stopping moment for me.  Fortunately, we managed to pull the snow from around the top of the pile until he could climb out.  He was laughing because it was so much fun and he wanted to do it again.

At home, we live on a lake.  My 13 year old daughter who is deaf loves playing outside in the cold.  She loves to go ice fishing, building snowmen, and, most of all, playing hockey.  She dresses warmly from head to toe…black snow pants, black jacket, a hat which covers most of her face, several pairs of gloves topped with hockey gloves, and boys hockey skates.  She takes her hockey stick and skates around the lake to the various hockey games trying to get an invitation to play.  From looking at her all bundled up, you cannot tell if she is a girl or a boy.  She is not verbal, so they cannot tell from her voice.  (She points to her ears for them to know she is deaf.)  She would normally use sign language but with hockey gloves this is next to impossible.  She is a good player and that is all that matters, and she invariably plays for hours. If one group stops playing, she will skate around and find another group.  She reminds me of a female Batman for hockey…slinking into games, her identity unknown…showing up out of the blue when a team needs a player!

Winter is alive and well with my kiddos, who enjoy it as I did when I was a child, but now I am old and get chilled easily..  If they want me, I’ll be sitting by the fireplace drinking hot chocolate and watching tv, often a show with a discussion about global warming.