Archive for the ‘adopted children’ Category

The Hospital Vacation

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An unexpected vacation came my way last week via a trip to the local emergency room when I experienced severe pain radiating from my shoulder down to the tips of my puffy fingers. The ER receptionist immediately had me whisked away in a wheelchair for a cardiac work-up, (not a recommended way to beat the line, but it was nice not have to wait!) The orderly swished me by all the cubicles so fast I did not have time to be nosy and glance in to see what everyone else’s commotion was about. The thing about the ER is that is houses REAL people with all their unglamorous appeal. No high heels or make-up. Unruly hair which obviously had not seen a comb in some time. Morning crustiness still in the eyes, line of drool down the side of the mouth. Bra-less, face contorted into an ugly grimace of pain, posture slumped over..and that was just ME, I could only imagine what everyone else looked like!

Once admitted to the cardiac ward, the nurses got right to work hooking me up to all kinds of do dads and thing a ma jigs. Their cheerfulness belied the seriousness of their work. I was comforted not only by their reassurance but also by the toasty, warm blanket that soon enveloped my body. Once the morphine took away the pain, I was a happy camper and willing test participant. Wheee! Off with another orderly for another test. Lay still like a sardine in a tiny metal tube while it sounded like the room was crashing all around me? Piece of cake. Electrodes super glued to my breasts? No problem, I wasn’t using them anyway. X-rays this way and that? Show me how to pose. (Those 5 modeling classes I took as a gawky teen finally came in handy!) Then there was the added adventure of being maneuvered, gurney and all, back to my room, bumping in and out of the elevators, around other patients and gurneys, and trying to fit through slim doorways all the while piloted by friendly orderlies. It was reminiscent of trying to scooter through Disney World with my daughter last May, and I tried to hide my silly smile lest the orderly think I was not in my right mind. (And, yes, the morphine was still working.)

Once back in my room, taking my blood pressure and poking and prodding for blood tests and glucose monitoring became commonplace at any time of the day or night. What an amazing staff of nurses and CNAs whose job it was to wake me only to poke me with a needle to capture my blood, and to do it all pleasantly when I felt less than pleasant for them having to do it. Although I tried not to be too crabby at them, my roommates were often less inhibited and grumbling was commonplace. Still, the staff smiled and carried on with quiet reassurance, seemingly immune to the barrage of complaints.

The most exciting thing for me was “room service”. Yes, “room service”, just like in a fancy hotel! Armed with an actual menu, I called down to the kitchen and my custom order would find its way to my bedside table. How amazing! Being a person obsessed with food, this was the highlight of my vacation. (Well, that and not being home to have to clean my house.) I carefully selected each meal; scrumptious omelet with tomatoes and onions, muffins and fruit, macaroni and cheese and broccoli with custard pudding, pot roast with salad with cake for dessert! Yum! It all sounded as good as I am sure it tasted, IF I were ever able to eat it when it arrived! Unfortunately, my food delights were delivered while I was away for one test or another. Imagine…meals being interrupted by medical procedures! What kind of vacation is that? The nurses offered to heat it up for me or to get me something else, but this seemed to be a silly request with all the important medical stuff that they had to do. When they took their jobs, I am sure that “waitress” was not in the job description.

Fortunately, it was the kind of vacation where the primary focus was my health; where what was going on INSIDE my body was more important that what I put INTO my body. With the utmost professionalism, the staff were unwaveringly pleasant, reassuring and kind. My medical care was top notch, and I was soon sent on my way home with expert instructions for the next chapter in my medical care.

Nothing could beat my hospital “vacation”. Next time I really want something as frivolous as a hot meal, I will go to a restaurant!The

Luck? Fate? or Something Else?

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I am a Diet Coke fanatic.  (Before people start telling me that it isn’t healthy for me, I have to admit that it is stress relief to take a long, satisfying sip of an ice cold soda. It might not be healthy, but it has kept me alive and perky!) Being very short on money lately, and exhausted from working a long day, visions of Diet Coke floated in the air. While fishing out a one-dollar bill that desperately clung to life in the bottom of my purse, the van automatically found its way to the convenience store where a humongous drink of Diet Coke awaited me. I put my giant cup under the spigot and filled it to the brim, excited at the prospect of getting such a delight for only 89 cents! Looking up, the large soda sign smacked me in the face; this was not an “all sizes pay same price” kind of store, and a large soda was $1.49! My heart skipped a beat and actual tears of disappointment filled my eyes when I realized I didn’t have enough money to pay. At just that point, the store owner, half my age, struck up a conversation. “That’s a mighty big van out there, must be difficult for you to drive,” he said. “I have five kiddos and it fits our whole family,” I answered with my back to him, still contemplating my payment dilemma. “God bless you!” he said, “The drink is on me!” I turned around and smiled excitedly, thanking him. He could not have understood how much that gesture was such a blessing!

The truth is, our family car situation has been difficult lately.  My Acura ceased to function several weeks ago, and my husband’s work van, 17 years old, also died.  We had to resurrect our old, 12 passenger family van, switching a couple of bald tires off with newer tires from his work van.  Driving the rickety monstrosity was a challenge for me. It wobbled terribly, and I had to grip the steering wheel with 2 hands. I complained to hubby who brushed it off as being “old, what did I expect?” I drove it back and forth to work Monday and Tuesday, still cursing the challenging drive.  Tuesday eve, Steven called me frantically. A friend’s car had broken down near the Providence Place Mall, could I come pick them up? Annoyed about having to drive to Providence after working all day, I climbed into the van to begin the arduous task of maneuvering the eyesore onto the highway.  With the van waving back and forth, I had difficulty keeping it in one lane, but finally reached Steven and pulled to the side of the road near him.  His eyes bugged out as he ran to the back of the van. “Your TIRE is almost off!” he shouted, showing me where one lone lug nut, ready to fall off, had been holding it on. Just as he said that, the lug nut fell to the ground, rolled away and the tire fell sideways onto the ground!  I shrieked in horror and felt like vomiting when I realized what that meant; I had been driving it for 3 days with the tire ready to fall off! (It was Steven and his ADHD that changed the tires…I suspect he got distracted somehow and never finished putting that tire on correctly.) I not only had driven it for 3 days, but I managed to drive it ON THE HIGHWAY at a HIGH RATE OF SPEED to get to Steven. How lucky was I that is didn’t fall off while driving where not only I could have been killed, but I could have killed someone else? I shuddered with realization. It seemed like fate! Or luck? Or something else?

The Diet Coke and loose tire incidents may seem unrelated, but to me, both are an affirmation that luck does not come into play.  I like to think it was Divine intervention, a thought both heartwarming and reassuring.  A thought that always makes me smile…and so far has kept me alive!

 

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

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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!

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.

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