Archive for the ‘autism’ Category

Differences

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Occasionally with my morning tea I play on the website Game Duel. This international site has all of the regular games for free; solitaire, Crazy 8s, Yahtzee and so forth. After waking up, I enjoy playing against other players as a semi-introduction to the social world, (before I actually have to be wide awake and sociable in the real world.) This morning, while playing Crazy 8s, my other two opponents were texting in Russian. Although they were surely texting trivialities such as “good morning”, “here comes a bad card”, and “nah nah nah nah nah nah”, my heart was immediately struck with fear. In this era of terrorism, and growing up in an age when the Russians were our enemy, I was irrationally frightened they were planning an attack on the US or something else negative. Worse yet, that they could tell who I was through my computer.

Prejudicial.

When driving through the Deep South in the early 60s, my father would take Route 302 instead of the highway, (which may or may not have been built at that time.) As a child, I was frightened at the attitude towards African Americans. There were “white” and “colored” signs above the bathroom doors, with a significant disparity between the two. I heard the local folk call the African Americans the “n” word, and talk down to them. Their attitude frightened me, and I could not understand why they would do such a thing.

Prejudicial.

When my brother was born with Rubella Syndrome with a massive cleft palate, developmental delay, hearing impairment and vision impairment, my four-year-old little self loved him to pieces. Not being familiar with all of the intricacies of babies, he looked just fine to me. As we grew, other people’s reactions to him upset me. They often recoiled as though in horror and I would wonder why. Other children called him the “r” word and point and laugh. Through the eyes of my love for him, I didn’t see anything funny about the situation. His mouth may have looked a little funny, but didn’t they see the glorious gleam in his blue eyes?

Prejudicial.

When my great aunts would visit from Michigan, they would sleep in my room on the big double bed and I would sleep in a cot in my parent’s room. They were elderly, but still had a lot of spunk. My mom would take them dancing at the senior center where they would dance with gusto to their favorite line dances. They were very affectionate women with my family and between themselves. I thought nothing of their holding hands while watching tv, but others talked in hushed whispers. It wasn’t until I was an adult that I realized that Aunt Mina and Aunt Betty were gay, and that they had to hide their “gayness” in the confines of our home because others in the community wouldn’t understand, thinking there was something wrong with them.

Prejudicial.

Fast forward to our adoption of Marie at the age of 7, who was deaf and had been severely abused. She was a wild one; untamed, disrespectful, destructive, stealing things at the store, and begging from strangers when given the chance. (I learned to stay by her side and intervene before she even got close to anyone unfamiliar.) She refused to wear girl clothes, insisting on wearing boy’s underwear, pants, shirt, shoes and socks. (This caused a slight problem at McDermott Pool, which had a strict “no shirt” policy 15 years ago. Because she insisted on wearing boy’s swimwear, she obviously needed a shirt!) She would tell everyone, (in sign language,) that she was my son. At her annual check up at the age of 8, she tearfully asked her pediatrician if he could sew a penis on her. As a very sympathetic doctor, he understood that her needs were different than other children’s. He gently took slim her hands into his big ones, and looked into her deep blue eyes, (which darted back and forth between his face and myself, who was interpreting what he said in ASL for Marie.) He said that it was possible to sew a penis on her, but that she had to wait until she was fully grown to make that decision. Relieved that at least it was a possibility in the future, she was consoled. In the meantime, she could continue to be a boy without the extra attachment. Since that time, with intense counseling, she confessed she only wants to be a boy was so that men wouldn’t hurt her. She continues to dress and profess to be male, but is not interested in getting the proper anatomical equipment. Her choice of male attire, now plumply filled out in the bust area, has been cause for concern for many. For her, and many other actual transsexuals, life is met with stares and disapproval.

Prejudicial.

My ever-optimistic brain would like to think that people have such negative reactions for the same reason I was fearful of my Russian opponents this morning; because they don’t know any better. If only everyone would just accept people as they are; to be valued and respected for their uniqueness….

 

I Know Why My Family Had To Travel

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I had always hated driving, which may have something to do with the fact that I traveled cross-country for most of my childhood years. My life lately includes a lot of it, with a granddaughter in Northern Massachusetts and a daughter attending school in Hartford. Surprisingly, I have learned to enjoy it! I find myself bopping away to music, using my right arm as a conductor’s baton, (one, two, three, four; the movements from music class carefully ingrained into me.) Worse yet, one can find me huskily singing along with great enthusiasm.

Taking non-highway routes as my father always did, the variations of scenery are fascinating. Children play on swings, grandmother sitting nearby, and clothes swing on a clothesline; do they use an old wood stove for cooking? Do they have an “icebox” instead of a refrigerator? Have I crossed over into the Twilight Zone? I remember driving through the same scenes as a child.

Many of the houses are memorable. One with natural wood and white shutters has a toddler standing in the window, waving, green curtains framing her. It is only after a few trips that I realize that that same child is always in the same position, waving, but wearing different clothing. It is not a child at all, but a doll that is lovingly cared for and placed in a prominent spot for all to see. Another red shuttered house has a flag waving on the front porch, a decoration to herald in the seasons and special occasions. With St. Patrick’s Day done and over, a Welcome Spring now blows in the wind. Driving, I take stock of such silly things as how much wood is piled in front of the lumber factory. (During the winter, the pile has diminished.) I was excited to drive by the nursery this spring.  During the winter after the holidays, it had withering Christmas Trees and wreaths, and was a  stark and unwelcome place. (The owners were probably enjoying sunny Florida.) Now, it is abloom with colors, flowers blazing in the sunlight, sunflowers winking at me, mums in pots and rose bushes awaiting planting.  Such a joyful place to drive by.

It was only as an adult that I realized that my dad and our family traveled so much because of his severe posttraumatic stress from the war. We criss-crossed the country, driving on the back roads. Driving hypnotized him into peace, keeping the awful memories at bay while experiencing the delightful ones of finding new places and exploring the many geographical areas of the country.

Driving the back roads has become more important to me now. No flash of highway exits and speeding cars, but leisurely driving through the countryside, relaxing my thoughts. Often, when observing the bright blue sky and puffy white clouds, the bright yellow sun will make its way down as a brilliant stream of light, and tears will inexplicably sting my eyes. Pure peace and joy. I have finally been able to fully understand the importance of traveling.

 

 

Please consider purchasing my book, The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane.

Thank you for the support!

 

 

 

Like a Breath of Fresh Air

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I’ve always dreaded the long winter months with all that cold and ice, but noticed recently that if I am dressed in a warm jacket with scarf, hat and gloves, the cold doesn’t seem to be as horribly frigid as remembered.  In fact, as I walked out our front door this morning with a temperature 23 degrees, a healthy dose of brisk air filled my lungs. It was a pleasant surprise.  The frigidity that swelled in my lungs really felt like the proverbial “breath of fresh air.”  It awakened me and I became acutely aware of my in and out breathing, (a technique for stress reduction that had previously eluded my abilities.) With the awareness of the winter chilliness inflating my innards, somehow the weight from the pre-holiday stressors leaked out.

Deep chilly breath in and out…my Thanksgiving turkey may have been dry, but hubby’s awesome smashed potatoes, squash and apple casserole, and pumpkin pie more than made up for it.  Why had I cared about the turkey?  With enough gravy, it was edible!

Deep icy breath in and out…the stress around the Thanksgiving table, with warring factions of children, became a thing of the past. As stressful as it was, there was nothing I could do about it. They are grown children who no longer reflect my beliefs but maintain their own truths and temperaments.  In one way, it is a relief to have them on their own, no longer my responsibility.

Deep arctic breath in and out…driving on Route 2 pre-New Year was an experience in hurry up and wait, and wait, and wait.  (Same experience trying to drive through Apponaug.) In retrospect, I did get to listen to beautiful Christmas music that I wouldn’t have had the time to do otherwise, plus traffic is now back to normal.

Deep frozen breath in and out…digging in the basement for the Christmas tree and decorations hidden under a pile of summer clothes, as well as putting the tree up with a minimal, scattered ornaments with no help from the children was a disappointment, but any reminders of such is now back in the basement, carefully put away to be easy to find next year. Out of sight, out of mind.

Deep bitterly cold breath in and out…buying the perfect gift for each was a concern, but the exhaling of cool, clean air convinced me I had the best of intentions and, in reality, there WAS no “perfect” gift, not one that I could afford anyway!

Deep frosty breath in and out…keeping the house clean through New Year’s Day while my son, his wife and daughter visited from California was a very hard challenge for me, making me anxious with every dropped tissue, spilled milk or spider spotted sitting up near the ceiling.  Pure stress, but throughout it I was still able to appreciate their company and enjoy their visit. Next time we will be going to THEIR house.

As enjoyable as the holidays were, the individual stressors had slowly added up inside me, preventing perfect New Year joy and relaxation. Perhaps I had finally accomplished the ability to use deep breathing as a relaxation technique. This was the first time I appreciated breathing in the frozen wintry weather, but it won’t be the last. On this cold, brisk day of January, that all changed.  It was like a breath of fresh air!

 

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Please consider purchasing my book, The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane.  Thanks!!!!

The Original Tiny House

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When our children were young, it was evident that we could not take Steven, with his autistic tendencies and severe sensory integration issues, on vacations to touristy hotels in unfamiliar areas. It only took us one trip to New Hampshire when he was a toddler to learn that his disability might be a hindrance for family fun and relaxation.

Never one to back down from a lifetime of vacations, hubby and I went up to NH a few weeks later to search for a home away from home in which Steven could be comfortable. We purchased a small cabin, one which would qualify to be a tiny house on Tiny House Hunters. It is cleverly designed, having 2 bedrooms. The “master” bedroom consists of a double bed inside 4 walls where one has to open the door outwards to crawl onto the bed. The second bedroom had 3 fashionable twin beds in bunked style, again accessed in the doorway. There is a tiny ladder to reach the 2nd and 3rd bunks. The tiny kitchen doesn’t matter because we usually grilled our food, and the tiny bathroom may have a bathtub in which I can’t sit up, but it is better than no bath at all.

This cabin has served our family well throughout the years with swimming, canoeing, fishing, frog catching, game playing and lots of family fun. It has never been as valuable as it has the past few years when hubby and I try to go up for monthly respite weekends. Life is so hectic and busy and often problematic having children with difficult issues that we literally count the days until we can once again relax in the woods; no cable tv, no wi fi, no telephone coverage, completely cut off from the outside world.

So it was that I relaxed this past weekend. Sitting on the deck, I sipped my tea and listened to the quietness. Every so often a bird would chirp, different birds, different chirps. I had never been interested in bird watching, but hearing the variety of peeps and tweets piqued my interest.

The snake that lived under the house was sunning itself on a nearby rock. Because Steven was a snake expert, I learned that it was not a dangerous snake, and would eat field mice that might otherwise invade our tiny house. I might prefer a cat, but a snake would do in a pinch.

The silence of the woods reminded me of meditation. My mind was calm and relaxed, free floating and super observant. The trees were all blanketed in dew, and thefat dewdrops hung from each leaf, defying gravity. I further noticed that on the end of each pine tree branch was new growth, poking out gently in a light green extension, a half inch or so long. Somehow I had never thought of trees growing, much less be able to witness it in action. The same flowers that we had planted at home without much success were growing like wild flowers at our retreat; large leaves everywhere, bright, vibrant flowers so tall and large that their stems were bent over with the weight.

It seemed like eternity, no thought of time or place, as I sat there and all my anxiety fell away and contentment filled its space. I was ready! I would “put my big girl panties on” and face the stress of the week ahead with courage, knowing that in another 29 days I could return to this place of peace.

 

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If you would like to read more about our family adventures, please purchase my book The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane through Barnes and Noble or Amazon.

“If You Look for the Goodness in Your Children, Good Things Will Happen”

My dear friends and readers,

Please excuse this commercial interruption of your regular reading.

If you enjoy reading my blog, you will LOVE reading my book!


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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen

(Review by Dawn Raffel from Readers Digest:)
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. Each child has their own special story about overcoming tremendous physical and emotional difficulties in order to be able to succeed and enjoy life. Her honesty, wit, and terrific storytelling make this a book you want to read rather than one you feel you should read.

The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

Thanks sooooo much! Happy reading!

Cup of Coffee, Anyone?

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My son, Steven, has somewhat struck out on his own with his infant daughter. He moved far away from home…across the street to the small house my mom used to live in. It is a great use of the house as he has a “convenience store” across the street, OUR house, which is VERY convenient because he has neither money nor car.
Thinking as an adult, Steven bought a used Kuerig coffee maker. Using those little coffee cups to make coffee can be quite expensive for someone who has limited money. He came over the other morning, and looked at me with his puppy dog, young adult trying to be grown up, eyes. He was out of coffee! Could I help? Sure! I had about 10 jars of instant Maxwell House coffee that I’d purchased for $2.50 at the local Walgreens. Each jar made a zillion cups of coffee. He looked at it quizzically; for his Kuerig? Sure! I handed him a little coffee holder for his device, and showed him how to put a spoonful of coffee granules in it. Off he went happy, none the wiser that he could have made the same cup of coffee with boiling water instead! Someday, when I have a lot of money to buy coffee, I will explain the difference to him. In the meantime, grown up Steven can have his cup of coffee in the morning without it breaking the bank!

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

Dad and Daughter shared Ice Cream

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My heart has been very heavy lately, which is a feeling that I am very unused to. The fact is, as my children age, some into young adulthood, their problems are more real life problems, not just a tantrum in the grocery store. 2 of my younger children, with as many good traits and skills that they do have, do not having the capacity to be fully self-sufficient as adults, including incapacity to maintain a paying job. Yes, SSI is a possibility when they are adults, but even that provides only poverty level income. They are my family and my financial responsibility, which necessitates looking at the ability of our extremely diminishing finances to care for them during their lifetimes.

Although hubby and I both work, often 6 days a week, and are considered solidly middle class, our bank account does not reflect this. Every time Marie has a PTSD episode, (every 6 weeks to 2 months,) the ambulance bill exceeds $1000, money that is not reimbursable. (She requires additional emergency personnel because restraining her safely requires at least six, strong professional emergency adults.) We have funded one college tuition, and are currently funding another at expensive colleges to best meet the special needs of my children, (for which they received no financial assistance because we are, after all, “middle class”…) In order to attempt to give them the best education to be able to succeed despite their disabilities, we subsequently have taken a large second mortgage on our home. And then a third… Hubby and I live “paycheck to paycheck”, as I am sure many parents of children with disabilities live.

But I digress…what I was saddest about is that Steven now has partial custody of a beautiful, vivacious daughter who is one year old. (Note to parents: make sure you talk OFTEN about birth control to your teenagers, especially your teenagers with disabilities…) He, and we, do not have any extra money to support her in the manner to which we are accustomed to supporting our children. With his Asperger’s (and extremely capable skills in caring for animals,) Steven is a doting dad. Not working, he has tons of time to spend with her and can generally be seen sitting on the floor of the living room playing with her interactively, rocking her for a nap, singing her nursery rhymes, or taking her in the large, fenced in back yard to swing and explore and play to her heart’s content. What he does not have is money to pay for her needs, and this breaks my heart. This morning, he asked if I have any “change” and if he can go look in the car if there are any quarters that have fallen behind the seat. At last count, he’d managed to scrape up $2.19.

Driving home today, I was stopped by the light near our house. On the corner is an ice cream stand where our family often used to take a walk for ice cream. The kiddos would giggle over whether they would get the chocolate jimmies or colored ones, (the sprinkles were free!) Today, I noticed the young man sitting on the picnic bench. Across from him was a stroller with a young girl in it. Both had tan skin and wild, curly black hair. Holding a small container of ice cream in his hand, he was using a spoon to feed her, laughing and playing the “airplane” game to put the ice cream in her mouth. She was giggling also, throwing her arms in the air as if to say “wheeeeeee!” after every spoonful. Steven exhibited pure happiness, that special kind of happiness a parent has for their child. They were joyful and the fact that she wore cheap diapers and wore hand me downs that didn’t always fit did not matter at all. Suddenly I felt a little bit better about not have any money, because Steven taught me today that money does not makes life purposeful, but it is love, which is free. Life is good!

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

To Be Joyful with So Little

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When Dinora and I visited her birth place, Guatemala, we spent some time with moms who were working picking coffee beans. They toil all day while their children play nearby. Prepared for this visit, Dinora had a backpack full of little toys; small dolls, Matchbox cars, bouncy balls, toy rings, and so forth. (Above is a picture of a little girl clutching a small ring in her hand, so pleased with her gift.) The children were amazingly polite. Each child would gather around Dinora as she gave them each a small toy. Taking it delightfully appreciative into their little hands, they smiled shyly and stepped back to leave room for others to come forward. They didn’t crowd her. They didn’t ask for more, more, more. They reveled in the joy of that tiny toy! Sheer happiness!

It made me realize that more and expensive and better isn’t the right Christmas concept for children as they may not fully appreciate their multitude of blessings. If only they could experience the happiness on Christmas that those children among the coffee bean trees exhibited. Pure joy! What a concept!

As Peaceful as Falling Snow

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My husband and I have the tradition of going to our little cabin in NH at least once a month.  We have had a real challenge raising Marie and Steven lately, so this weekend was especially timely.  Right now I am sitting in a comfy chair, feet up, air warm around me, and a cup of hot chocolate with lots of marshmallows sitting on the table next to me, adding steam to the air.  I am smiling thinking of how this cabin has served us well over the years.

When Steven came to live with us, his obsessive compulsive disorder, extreme hyperactivity and severe sensory integration difficulties were not conducive to family vacations in hotels and such. My father, who adored Steven and saw many of my brother’s mental health traits in him, generously purchased this little vacation home.  He himself had always wanted a house in New Hampshire, and he was proud to be able to give me something that would last a lifetime.  The cabin is full of his carvings, including a sign that says “RELAX!!!”  It might be a reminder to actually relax, except on the sign is a carved eagle with a beak so sharp and long and eyes so wildly life like that it kind of scares me instead.  Fortunately, I have learned to look on this sign with love, a reminder of my dad and his “quirky ways”.

On the wall of the cabin are pictures of the kiddos through the years; Francis water skiing, Dinora standing gloriously in front of Mount Washington, Steven holding up his bucket y.of frogs, one frog in his hand thrust towards the camera looking huge next to his tiny body, Andy wildly waving a sparkler on the Fourth of July and Marie holding up a huge fish she caught ice fishing, almost too heavy for her to hold.  There are other pictures of all of us together, or the kiddos playing in the sand at the beach, cuddling on the deck of the cabin, or hiking in the woods.  The pictures are a nice reminder that we have been parents for a long time, and our children have led full and happy lives with us.

While staying in the cabin is reminiscent, it also serves as a retreat for me and my husband.  It is very quiet here.  No telephone reception. No multitude of cable tv channels.  No internet.  No neighbors. No housework.   No stress.

The weekend is a wonderful interlude to our busy lives, an interlude where we are free to nap all day, laugh at silly things, eat  wonderful concoctions Raymond dreams up, (last night it was shrimp rolled in bacon and topped with cheese,) and spend lots of time loving each other.  While we are loving when at home, we go into overdrive in the secluded cabin. No neighbors can hear our screeching laughs.   No children can walk in on our sexual escapades, and no one cares if I walk around bra-less. We are “free and easy”, and the stress just melts away…

Today, the day we will be packing up to go home, I am sitting here writing this, content watching the snow slowly falling outside; soft, fluffy, amazingly beautiful snow!  Peace surrounds me now.  I am well rested and have laughed and loved my stress away, and I am ready to go home to face whatever challenges may come my way.  Bring it on!

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!

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