Archive for the ‘adopted children’ Category

I’ve Never Been So Happy to be Sick!!!!

ginger20ale

Just like everyone else’s, my life sucks from time to time! This past month has been one catastrophe after another. Marie, my daughter who is deaf, had again been hospitalized due to a dangerous PTSD episode. When in a dissociative state, she downed staples in an effort to kill herself. Ever the optimist, I was hoping against hope that her memories of severe abuse would begin to soften, maybe even heal. Alas, not yet…this will be a lifelong battle.

My son Angel, who had just begun to drive, was involved in a rear end collision. While slowing down for a red light, KAPOWEE! another car hit him in the rear, pushing him into the truck in front of him. He was briefly hospitalized for whiplash, but the emotional impact was even worse. Sleeping is a luxury he no longer enjoys; wild fears and thoughts flood his already befuddled mind. He has stopped doing the things he used to do, clearly depressed that his means of freedom no longer sits in the driveway. Through no fault of his own, his major pride and joy, his ability to drive around and help others all day, has been destroyed. The car, safe and well running, was bought new in 2008. The insurance company only paid the Blue Book value of $4200. Because we do not have additional financial means, trying to find a car for such a small amount of money has been a real challenge, and every day that goes by without a car for Angel pushes him further and further into depression.

Marie’s recent birthday party was ruined when Steven “acted up”…having a full fledge outburst. (He has a severe sensory deficit with which he can not tolerate crowds or things not in his regular schedule. I should have had the foresight to arrange for him to be elsewhere.) Steven punched a hole in the wall and swore obscene obscene obscenities, (I know most obscene obscenities, but he came up with a few that were even more hard core.) As he stormed off down the street to settle himself down, the damage had already been done. Mortified at this behavior that most of our guests had never seen, everyone left, making a bee line for their cars, children in tow. Marie, who in her deafness had not heard the commotion, had been fishing on the dock behind our house. When she turned around, everyone was gone! She was quizzical at first, but not being a real “people person”, she took it in stride, especially because everyone had left their gifts for her!

My own work has been more difficult. The agency has hired a public relations person, and suddenly referrals have been flooding in. With an exponentially increased workload, putting in 50 hours a week has not been uncommon. What HAS been uncommon is the wrenching ache that developed in the pit of my stomach. Food would spew out of my stomach a half hour after I’d eaten. I felt awful, but I trekked on, saltine crackers and ginger ale bottle in tow. All my life, stress did not bother me. I could handle anything! No problem! Que sera sera! A little stress was not going to deter me from my job duties! (Like a mailman, neither ran, nor snow nor dark of night would keep me from my mission.) But as the stomach ache dragged on, my enthusiasm waned. I actually became depressed! My life, as I knew it, was over… or so I thought…..

After two weeks of eating nothing but chicken rice soup and saltines, I dragged my depressed little body to the walk in clinic. Taking one look at me, they sent me to the hospital emergency room where an intravenous was started to alleviate my dehydration. Laying there, I watched several bags of liquid force fed into the little vein in my hand. They did many tests, some to which I may have objected but I was too weak to stand my ground. Lo and behold, I was really sick! It wasn’t stress! It was salmonella poisoning from an egg breakfast at a local diner two weeks previously! Although I lay there on the gurney still feeling ill, happiness filled my heart. I was sick, not stressed! Life would return to “normal”, including all of the small tragedies and heartbreaks and problems associated with having five children with disabilities. But I could handle it! Life would go on!

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A Christmas Gift from Above


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 28 years old and has had perfect hearing ever since that day! And I have lived life with a peaceful,generous heart because I know, without any doubt, that God is with me.

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It’s No Fun to Play Scrabble Alone

I lead a complicated life, but every evening I take time out for a nice bubble bath and frozen wine cooler.  I used to read the newspaper while in the tub, but lately my patience has been tested and I find it too big and cumbersome to read without it dipping into the water.  So, I have been playing Scrabble on my telephone. I have played Scrabble all of my life, most often with my mom who passed away a few years ago.  We were pretty evenly matched, and playing together gave us quite a bit of quality, stress free time together.  I welcomed the chance to play Scrabble in the tub, equating it to the fun, stress free times when I played with my mom.  Instead, I have found out that it is no fun to play Scrabble against the computer.  It is not that the computer always wins, as I can beat it 50% of the time. It is because it does not play fairly.  When playing with my mom, instead of choosing a small word for a lot of points, (think zip,quit, hex…) we would play a larger word (such as trainer) in order to open up the board more.  There is nothing I hate more than having a board where the words are concentrated in one area so that there are few options for play.  By playing the larger word, more options would be available.  Sure, it would be less points, but the game would be easier and more fun.  Also, my mom and I would purposefully set up an option for the other player to use a double or triple word score.  Again, not a lot of points individually, but more fun for our partner, and therefor more fun for us, who gained pleasure from the happiness of others.  I guess we played Scrabble like we lived our lives…considerately, unselfishly, with an eye towards more fun and enjoyment.  These traits have not been programmed into my Scrabble computer opponent.  It wants to win, and does not care if the words are too close together.  It also chooses to use the double and triple word scores itself, not sharing them with me!  It is not like playing with my mom, and playing it does not relieve my stress.  It is just no fun to play Scrabble alone…

 

 

 

 

 

If you are new to my blog…welcome…please check out my e-book The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane.

I Used to Think People Who Celebrated Their 25 Wedding Anniversary were Old…I was wrong!

When I was young, I thought couple who celebrated their 25th wedding anniversaries were old.  I learned when I celebrated mine, that they were really quite  young.  I was astonished I ever thought differently.  How could I EVER have thought that?  I must have needed glasses at the time.

Being married more than 25 years to my “first love” has been a blessing.  He was the cook and I was the waitress at a restaurant I worked in while in college.  Here is some advice for anyone reading who is not yet married:  LOOK FOR SOMEONE WHO LIKES TO COOK.  I have been so fortunate because HE does all of the grocery shopping and cooking.  Really.  I come home almost every day to a delightfully cooked meal, complete with salad, meat, veggies, and an tall iced glass of Diet Coke.  He used to make desserts, too, until we both started to expand our waists…

For Thanksgiving, we have a great family tradition.  I and ten others in my immediate family, (children, their significant others, and a grandchild) go to the movies. Yes, the movies!  We saw “The Life of Pi” because several of my children are fascinated with animals. It was about an Indian boy shipwrecked with some animals from his family zoo. Everyone seemed to enjoy it because it had something for everyone.  Brooding, spiritual, philosophical content along with a cheetah jumping on animals and killing them for food.  The food chain.  Done tastefully with no blood or other sites where one has to turn their head, shut their eyes and go “EWWWWWWW”.  We enjoyed buckets of drenched in fake butter popcorn and ICEEs.  Great day at the movies for us. Great day in the kitchen for my husband, who loves to cook but likes to have a quiet kitchen, something which is rarely available to him.

We came home from the movies and VOILA!  Turkey and trimmings are on the neatly set table with the obligatory child made Turkey centerpiece.  All 12 of us sat down and had an extremely delicious dinner. My husband basked in the glory.  There is nothing better than doing something you love and getting praise for it.

I was proud of my children who “signed” (American Sign Language) for Marie, who is deaf. We signed the simple Thanksgiving prayer,and the conversations began. As a mother, there is no sweeter sight than all of my family members being happy and sharing conversation with Marie, who smiled and laughed and participated.  I think I have raised them right. I remember that every Thanksgiving and I my little heart smiles inside me.

 

 

 

In case readers may not know, my book was reviewed by Readers Digest:

Nov 02, 2012 11:04 AM EDT

What to Read After a Hurricane

by Dawn Raffel

Shortly before Hurricane Sandy came to my town, flooding my house and knocking out the power (which is still out), I had the good fortune to download The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane by Linda Petersen.

Her story begins not with her children but with her own childhood spent traveling the country in the backseat of her parents’ car (her perpetually restless dad had post-traumatic stress disorder from  WWII), often with very little money and few provisions. Where someone else might have seen deprivation and isolation, Petersen viewed her unusual childhood with a sense of wonder and gratitude. After marrying young and giving birth to a son who was legally blind (and who went on to earn a PhD on full scholarship), Petersen and her husband adopted four more special needs children and fostered many others.

Her honesty, wit, and terrific storytelling make this a book you want to read rather than one you feel you should read. So there I was, swiping pages on an iPad in the dark in a blackout… I couldn’t have picked a better book for putting it all in perspective.

http://www.rd.com/recommends/what-to-read-after-a-hurricane/

Aside

I Saw the BEST MOVIE EVER with my Daughter…and It had Nothing to do with the Title of the Movie!!!

Yesterday my daughter, Marie, and I went to the movies.  The name of the movie isn’t important, (except to say it was  a Pixar film.)  The reason it was so great was because, for the first time since we adopted her nine years ago, I finally got to sit and relax and enjoy the movies!

Marie is profoundly deaf and communicates in American Sign Language.  The movies we tend to see are movies such as Shrek, Finding Nemo, Ice Age, Madagascar and so forth. The negative thing about these wonderful movies is that there is no way Marie can lip read what the characters are saying.  “I love you so much” can look like “Go jump in a dump.”  In order for her to enjoy the movies, we have long sat in the last row, underneath the single emergency light in the far left corner, and I have “signed” what the characters are saying.  Although my signing isn’t fluent, she laughs in all of the appropriate places, so I am happy.  (A happy child makes for a happy parent.)  The bad part of all of this is that I don’t get to really enjoy the movie.  I am so busy signing that I don’t get to see what is happening on screen. PLUS, (major disappointment…sob…sob….) I don’t ever get a break to eat any of the popcorn Marie happily munches away on.

Then came rear window captioning.  It sounds like a great idea. It is basically a screen of plexiglass that sits in the cup holder and it has to be positioned JUST RIGHT in order to reflect back the words that are coming off the projector at the far end of the auditorium.  The problem with Marie is that she also has ADHD.  She fiddles with it and fiddles with it until it is covered in popcorn butter and it is impossible to read the words. Plus, it must be damn annoying to the movie patrons sitting anywhere near us.

Well, yesterday the heavens opened up and dropped down a device only God could have made to relieve me of my signing duties…a small device that also sits in the cup holder but has closed captions.  Marie positioned it perfectly to fit her view of the screen the same as she watches closed captioning on television.  To her it was no miracle.  She’s used to closed captioning, and it probably didn’t mean all that much, because she gets to enjoy the movie either way.  But for me, it WAS a miracle. For the first time in NINE YEARS I finally got to enjoy that delicious (?) movie popcorn and I could watch the movie and actually enjoy it.  It was the BEST MOVIE EVER!!!!!

 

I’d be remiss if I didn’t remember to mention my e-book available on I-Books, Amazon, Barnes and Noble, Kindle, etc.  The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane.

Aside

I Thought That Only Happened in Cartoons…

When Angel recently graduated from high school, (Thank GOD for that huge accomplishment,) I lent him my mini-van for a car.  When Dinora graduated from high school, we paid 1/2 the price of a car for her so she could use it to go to work and college.  By the time we got to our 4th high school graduate, lending him my car was the best I could do! He has been thrilled with the mini-van, unfazed by the stares from classmates. He can drive and he has a car and that is all that matters!

Fortunately for me, who gave up my mini-van, I was able to obtain a huge 12 passenger wheelchair life van for free.  (long story.) It is so tall that I need a step stool to climb up into it.  And I am not very ladylike in doing so!  But once I get in and start driving, it seems like a regular car to me, as long as I just look forward.  I also just drive it forward, of course, because backing up this monstrosity of a van is a little beyond my capabilities.

This van is a 2002. Huge. Older model with some mechanical difficulties. Last week, it would not start.  It appeared that all of the oil had drained out of the engine. I couldn’t budge it.  A frequent user of AAA, I called for a tow to our family mechanic.  I told them my van needed a tow.  They asked me what kind of van.  “White”, I answered.  “Dodge”.  They asked me what model Dodge, and I told them a van.  (How was I to know that there are many styles of vans? I’m just a little old mother…) “1500?” they asked.  “Sure!” I answered.   I waited the requisite half hour, and along came a cute little tow truck with a lovely driver.  He took one look at the van, which towered over his tow truck, and started to laugh.  “They didn’t tell me it was a 3500 model” he said.  I took the blame for that, pleading ignorance about vans.  He did not look too hopeful that his little tow truck would be able to tow it, but because he did not want me to have to wait any longer, he offered to try.  He was very nice.  He backed up the tow truck and hooked up the van.  As he started to try to lift it, the van did not budge!  Instead, the tow truck moved, and the front of the truck was soon lifted high in the air! It was hilarious!  As the driver slowly lowered his truck, he apologized that he “did not think” he would be able to tow it.  And we both burst into laughter.

I had to wait several more hours for a flatbed tow truck to come to bring the van to the mechanics.  I didn’t  mind the wait.  I giggled the whole time!

Angels Among Us

First blogged January, 2010

My mother passed away several months ago and it has taken me this long to write about it.  She was the most wonderful mother in the whole world, (and I am not just saying that because that is what one is expected to say about their deceased mother.)  In addition to being kind and loving, she was also very spiritual.

I remember when I was four years old and we lived in Opalaka, Florida, right behind the Hialeah Race Track.  We had a cement swimming pool in the backyard which my father built, and next to it was a palm tree my mother had planted crooked so it was growing sideways.  I had a green parakeet whose name I certainly don’t remember, and I loved watching Howdy Doody and Captain Kangaroo on our little black and white tv with the rabbit ears antenna.  My brother was born one day in March, and life suddenly changed for our family.  My brother was born with serious disabilities due to Rubella Syndrome, (supposedly my mother had been exposed to someone with German Measles.)  With a cleft palate, he could not nurse or drink from a bottle, so he was fed by a large eye dropper. He could not such on a pacifier and he cried constantly.  He was blind and deaf and was obviously going to be severely developmentally delayed. My joyful childhood was suddenly overshadowed by a sadness of which I had never seen from my mother.  I would witness her throw herself across her bed and sob. A deep sadness enveloped our family. I looked at my little brother, who looked so innocent and little to cause such a fuss.

One day, when the sun was shining brightly and Curtis was asleep, my mother called to me to come sit in the rocking chair with her.  She squeezed me and held onto me tightly, rocking  and crying.  It was a different kind of crying, though.  A happy cry, if I could describe it as such.  From that day on, the gloom lifted from our house and I went back to living my happy childhood with my new baby brother.

Many years later, when I was a young teenager, my mother shared her experience of what happened to her that very day.  The doctors had been encouraging her to put my brother “away”, institutionalize him as was the custom in those days. “Forget about him,” they said, “You can have another child.”  She could not bear to make the thought of doing this.  Then, on that sunny day while rocking in her chair, she told me she was visited by an Angel, a beautiful, bright white Angel.  She told me she could feel the weight of the Angel’s hand on her shoulder, reassuring her that everything was going to be okay.  Although the Angel did not speak, she knew what the message was.  She did not have to worry anymore, her son would be fine, and he was.  He wasn’t fine in that he suddenly became perfectly healthy, but he was fine in that he has led a happy, fulfilling life. Clearly, she had been touched by something spiritual on that day to turn her torrents of tears into smiles of joy over her new baby.

Several years later, while camping high in the mountains, my mother woke up from her sleep and sat up in her sleeping bag.  She was joyous!  She told me she had been to see God, whom she described as a bright and beautiful. She said it felt real, not like a dream at all.  She was confused as to the experience because it seemed as though she was there to help a friend pass over into heaven.  She did not understand because of course her friend was healthy.  It was not until we returned home from vacation that she learned that this friend had died from a brain aneurysm on that very night at that very time.

My mother lived a life of  great happiness and contentment, always seeing the good in people.  Near the end, right before she died, I stayed with her 24 hours a day.  When we knew death was near, the nurses let me lie in bed with her and she passed away in my arms.  I don’t know what I expected when she died.  No…that’s not true…I expected to see some of what she had experienced!  I expected to see her pass into heaven!  I expected there to be some reaction from her body, some knowledge that her lifetime of spirituality would somehow, through osmosis, pass through to me.  But there was nothing.  She just stopped breathing. And there was nothing.

It took me a while to accept her death, and I became angry that there was no sign from God that she was with him.  Realistically I knew this was silly, but I was hugely disappointed.

Christmas time came soon afterwards.  As the parent of 5 children, I had this habit when the children were younger of taking a picture of their sleeping faces on Christmas eve.  As they aged, they hated the existence of these pictures!  (They were usually sucking on a “binky” at the time and girlfriends and boyfriends who saw the pictures in old photo albums would always go “Awwwwwwwwwwww, how CUTE,” the most mortifying thing that could happen to a teenage macho boy!)  This Christmas eve, filled with nostalgia, emptiness and sadness,  I again went into each of their bedrooms and gazed at their sleeping faces.  I was suddenly filled with a great sense of purpose and contentment, much like the type of contentment my mother might have felt when she felt the Angel’s hand upon her shoulder.  These were MY Angels.  These were my children who had endured so much when younger, either with their disabilities or with indescribable child abuse. They have not only survived, but they have THRIVED.  They are happy and loving and successful and they have bright futures as adults.  This is miraculous to me!

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