Posts tagged ‘God’

“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!

Literally, God Will Provide…

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In my years on earth, miracles have happened that have strengthened my belief in God. Whether it be my daughter, Dinora, gaining hearing after being deaf, or the provision of a wildly disputed passport showing up in our mailbox just in time for her travel to her birth country when she was a teen, I have been blessed. But I’ve never been more surprised about God’s ability to provide until today…

We have to share our cars now that Angel is driving, and today was my turn to take the big family van. Being short on money this week, I fished out a one dollar bill that still clung to life in the bottom of my purse. Victory! When stopping for gas, I could go into the convenience store to get a bi-i-i-i-i-ig drink of Diet Coke to last me the day! Once in the store, I put my la-a-a-a-a-a-a-arge 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, I suddenly noticed that this was not an all sizes pay same price kind of store, and that a large soda was $1.49! My heart skipped a little bit when I realized I was going to have to go out to the van to dig up some loose change in the carpeting or under the seats to pay for the soda. Just as I was putting the lid on the cup, the store owner struck up a conversation. “That’s a big van for you to drive,” he said. “I have five kiddos and our family all has to fit,” I answered. “Yeh,” he said, “But it must be really difficult to drive that thing.” I just laughed and shrugged. I was just about to tell him that I was going to have to leave my drink on the counter to run out to get more money (hoping to dig up another 3 quarters,) when he said suddenly, unaware of my financial situation, “God bless you! The drink is on me.” I smiled and said an enthusiastic “Thank you!” He could not have understood how much this gesture was seen as a blessing, (especially because when I got back to the car I could only find six pennies, two dimes and a nickel.) God provided a Diet Coke so large that I had enough to drink all day, and I still had a dollar left in my pocket! Maybe no big deal in the scheme of things, but, to me, it was a personal affirmation that God DOES provide!

Similarly, another provision surprised me today. Having recently saved up enough to buy a flat screen television to put on the wall, we have been remodeling our living room. I washed and hemmed some new curtains and shampooed the rug. Without the large, old television cabinet, the room looked much cleaner and brighter EXCEPT for our 25 year old couch that displeasingly hugged the wall, looking like an old walrus, slumpy and bedraggled. (The couch was so old that I could not count the number of stains, or the times the skirt had been super glued back on because one child or another had ripped it off in a PTSD or dissociative fit.) I would buy a few throw pillows to brighten it up, I thought to myself, just as my phone rang. It was a neighbor, one I always wave to but don’t talk to too often. They were getting new furniture, she said, did I want their leather, L shaped couch? It was still in good shape, she explained, and they paid $6,000 for it, but they were looking to redecorate. DID I WANT IT???? DOES POPCORN POP? DO FERRIS WHEELS TURN? Yes, yes YES! Of course I wanted it! What an unexpected surprise! How wonderful is God, who provides even when we don’t ask! That is truly a Being that sees inside our hearts.

I Am a Certain Thomas

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My life has been blessed with the certainty of God’s existence. My brother was born multiply disabled with Rubella syndrome, (a warning to those who do not believe in immunizations.) He was almost deaf, blind, severely developmentally disabled and had a cleft palate, along with several other physical anomalies. My mom spent the first few months of his life sobbing on her bed. It was a confusing time for me as a child…my mom was not available to me, this new creature in my house mewed like a kitten for hours on end, and my dad did everything he could to not be home. Then, one sunny, warm day, my mom sat in the sun parlor on a rocking chair, rocking Curtis as he cried his kitten cry. Then a miracle happened…she was visited by the Holy Spirit. He/she came right on in, with a brightness that far surpassed the streaming sunlight, a brightness that would have been blinding were it not for the fact that it wasn’t. With a warmth of all encompassing love and joy. With a deep understanding that was somehow passed along to my mom. My mom stopped crying that day, and never again cried for my brother. Instead, he was raised with love; encouraged to do his best and accepted for what he could do, not what he couldn’t. My young life was so awesome after this experience! I have lived with that spirit in my heart; joyful and loving. Accepting and encouraging. Yet humble and in awe of all that life has to offer.
While that one experience changed my life, it was another experience that cemented my belief in the existence of a higher being. We traveled much during my childhood, and once we stayed atop a mountain, reveling in the views of the valley during the day and surrounded by pitch darkness at night. It was a time I valued having a campfire, sitting next to it with my poking stick, playing with the coals and listening to the gentle sounds of the night. Sleep came easily. I was awakened by an unbelievably loud noise and shaking of the earth, as though the whole mountain had exploded. The sound was so intense and unusual that my first thought was that it was the end of the world. In that instant, as I imagined “the end“ was near, an incredible sense of contentment and love immediately washed over me, with the joy of anticipation of a peaceful after-life. As silly as it sounds, I was actually disappointed to learn that the noise was just the sound of the thunder high in the mountains. What kind of person, especially a child, would have that thought????? I should have been frightened beyond belief, but I wasn’t. While my experience may lack scientific validity and meaning, it affected me deep in my soul and has deeply influenced the way I live my life.
Since that fateful night on the mountain, there have been a few more wisps of God in my life, the most notable being the unexplained healing of my daughter, Dinora’s deafness.
Many Christians heard the Gospel story of Thomas last Sunday. Thomas was one of Jesus’ disciples who would not believe in Jesus’ resurrection until he put his hand in Jesus’ side to feel his wounds. Since has come the term “Doubting Thomas”. I am Certain Thomas because I have so fortunately been given a rare sight into God’s existence, an existence of which I am sure and without doubt. It has been natural to live my life the way I have, and to do it with love and joy and acceptance. I’m not doing anything extraordinary, only what is natural given my knowledge. It is so much more meaningful for those who life similar lives, helping others, raising children, being peacemakers, donating material and monetary possessions, and loving others without qualification. They do so out of faith without proof, an amazing accomplishment for sure!
How would YOU live your life differently if you knew, for sure, of God’s existence?

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For more stories about my childhood, please, read my book. Here is a link:

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

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

How NOT to Raise a Child with a Disability

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When your child is a toddler, focus on all the things he can’t do. He’s not walking as soon as other children. He’s not talking as good as other children. It is embarrassing to take him out in public because everyone comments on his looks. Blame your spouse for his disability. Or, equally worse, blame God. Whey has He forsaken you? Why has He saddled you with this tremendous burden? Spend your child’s infant and toddler years lamenting the sadness, disappointment and loss.

As your child gets older and goes to school, always blame the teacher or the principal if he can’t do something. After all, it MUST be their fault. They are discriminating against your child if they try to make him behave or actually complete his school project. He has a disability! Doesn’t that come with the right not to have to do homework or obey the class rules?

Try to force the sports teams to let your son play, and they will. But your son cannot play soccer/baseball/basketball as well as the other children and he is humiliated by his poor skills and the disappointment from the other children when their team loses. Make sure to yell at your child for his poor performance. After all, if he didn’t have a disability, he would have made a great soccer/baseball/basketball player, and it is a horrible loss for you to admit that your son is a failure.

Argue with your partner/spouse over your son. You don’t both agree on the best style of parenting, so each do your own thing and teach your child that he is a constant source of distress between the two of you. Possibly get divorced. And blame your son. If he hadn’t been born, you would have had nothing to argue about.

You see your son as worthless…he can’t play sports, he gets in trouble all of the time in school, (as you have been his best advocate that he doesn’t have to follow the rules because he has a disability,) and he has minimal social skills. Do not be surprised when he turns to drugs.

He assumed that he was SUCH a disappointment that you would be better off without him. Do not be surprised when he takes his own life…

This rant follows a recent suicide of one of the students who is visually impaired with whom I worked. Like all adults who were a part of his life, I wonder where I was to blame. I tried in vain to impart my enthusiasm for a bright future for him. I tried in vain to make the parents realize that by setting their child apart they were denying their child an equal part in society. I tried in vain to tell the parents that their child may not be good at basketball, but he could swim spectacularly! Maybe he couldn’t play soccer, but give him a bowling ball, a bowling ramp and a lane of pins and he could get a strike two times out of four. He had such a way with younger children that I imagined him a teacher one day. But his parents did not see it. They only saw their own disappointment. Their own embarrassment at having a child who looked different. Their own anger at each other for the having “caused” this disability. They only saw their own feelings and never once stopped to think about how this was affecting their child. Their child who would never become the teacher I envisioned.

My suggestion to parents of children with disabilities is this: your child is a wonderful creation who, for whatever reason, was born with a disability. Rejoice in your child! Look for the things he CAN do, and incorporate them into your daily life. Plan for his education in a realistic, non-judgmental manner. Sure the teachers may screw up once in a while, but haven’t you also, at one time or another, misjudged your child? Try to keep the peace at school. You only meet with the teacher once in a while, your child has to go to school every day. If you and your spouse disagree over parenting, see a counselor who can help you work together. Most of all, find something in which your child excels and enjoys, and fly with it! Everyone wants to have success in life, and your child is no different. Whose to say one type of success if more important than another?

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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

For Sentimental, Sappy Souls

On Columbus Day, my husband and I spent a wonderful day just driving around and enjoying the autumn scenery. I don’t know about you, but I seem to have an unusual sensitivity to the beauty in nature, and was once again overwhelmed by the beauty of the bright white and yellow streaks of sun streaming down through the white puffy clouds. Such a sight always encourages me as if reinforcing the fact that yes, there are clouds, and yes there may be rain, but that sun is still up there in the sky, overseeing it all, just waiting to break through and make things better. As an added visual treat, the sun shone so brightly on the tapestry of peak autumn leaves: oranges, reds and yellows, that I felt a need to wear my sunglasses, but with them on I would not be able to fully appreciate the effect of the over-the-top, gasp inducing colors. No photo, piece of artwork or beautifully sung song could have replicated the intensity of happiness that brought tears to my eyes and joy to my heart.
My husband and I sat, holding hands as he drove. There was no need to say anything. We were at peace, pleased to have such a respite after a hectic week of raising children and dealing with problems. We were in our own beautiful bubble, cell phones turned off so as not to ruin the interlude. It was a wonderful day!
Upon pulling into the driveway of our home, I spotted the two small maple trees which Marie had planted a few years ago. She had excitedly dug them up when they were fragile saplings with broken branches, and planted one on each side of the driveway. She had added gravel at the base of each, and attached a tall, straight, thin stick to keep them growing upright. I don’t know why I hadn’t noticed them before. I had NOTICED them, of course, but I had never really SEEN them. They had grown to be about four feet tall, straight and strong. My breath stuck in my throat as the brilliant, bright yellow leaves danced happily in the gentle breeze. They were a growing metaphor for my daughter, blossoming and beautiful and holding the promise of a bright future in their little yellow leaves. Despite once being fragile and broken, they would grow tall and amazing and fit perfectly in this world, reassuring me that my daughter, who was also once fragile and broken, would grow tall and amazing and fit perfectly in this world.

I Thought It Was the End of the World…Really!

I led a very eclectic lifestyle when I was a child, traveling around the country with a vagabond family. It was a wonderful life, made all that more meaningful by a mother who possessed a natural spirituality. We may not have gone to church Sundays, but our life was naturally filled with the presence of God.

Because I feel that I know you all, I am going to share a personal, life altering childhood experience. We were camping high in the mountains, a favorite spot for my father because he could sit and look out over the valleys and little towns below. For him, it seemed to minimized the stressors of life. How could life be so bad when the people were the size of ants and the lakes the size of large drops of water? For whatever reason, he seemed to feel safe in the mountains Things were good. Things were peaceful. We were content.

One night while I was sleeping, I was awakened by an extremely loud, earth shattering noise. My body shook with such a ferocity I thought I was going to fall out of my top bunk. Although it was later determined to be a nearby bolt of lightning, I will never forget how I felt immediately when I woke up; I thought it was the end of the world! I thought life as we knew it was over. My immediate reaction was such profound joy and love that my heart wanted to burst with happiness. I was deeply disappointed when I found out it was only thunder, and not a joyous entrance into the world beyond and an opportunity to meet God.

As a child who had never read the Bible or been “religious”, in retrospect it is surprising that my first thought was not fear at the concept of the end of the world but joy! It was not something I had learned about in catechism, or had even thought of before. My first feeling was automatic and unbelievable happiness and love. And it is that feeling that I carry with me to this day. For I know that the heart of that child so many years ago experienced a true and prophetic revelation…that God lives in the hearts of all of us, we just don’t always see it. Wouldn’t the world be different if we all knew, beyond a shadow of a doubt, that a joyous eternity awaits us? I was so very fortunate to have learned that at an early age…

“All she does is screech and say No! No! No!”

 

The above description fit me perfectly.

Yes, me… perfectly.

Marie came to live with us at the age of 6.  She had been picked up off the street at 4 in the morning, barefoot, in her underwear, looking for food.  We took her in as an emergency foster placement because I knew American Sign Language and Marie was deaf. She looked like a wild animal…disheveled, matted hair, flaming eyes of distrust, so filthy everywhere that even an hour in the tub did not wash off all the grime.  Her teeth were dingy yellow, and her body was emaciated.  Being the “good” middle class mother that I was, I cleaned her as best I could and then I took her to buy some clothes.

In the store, she immediately disappeared.  I impulsively called her name, (as though she could hear me.)  When I finally found her, she was in the candy aisle, shoving candy bars into the pocket of her pants.  I screamed,  “No! No! No!”  She looked at me and ran in the other direction.  I finally tracked her down in the pet aisle, just as she was about to open the cage to the hamsters.  I screeched and said “No! No! No!”, and proceeded to grab her, pick her up, empty the candy bars in her pocket, and tote her back to the car without buying anything. If I thought this would teach her a lesson, it did not.  She was not used to buying anything, so she could not appreciate something she never had.

We ate out for lunch at McDonald’s.  Marie ate her sandwich and drank her milk and threw the wrapper and container on the floor.  No! No! No!

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The next day I gave her a stern talking to (“signing to?)  and told her that we were going shopping for clothes and that she needed to stay with me. As though THAT was going to work!  As soon as we got into the mall, a place she obviously had never seen before, she skirted UP the DOWN escalator, laughing with glee.  Mortified, I screamed and said No! No! No!  and then watched in horror as she slid down the banister of the escalator.  Big scream! No! No! No!  Home we went. 

Once at home, she got an orange to eat.  She grabbed the butcher knife to cut it and I screamed and caught her hand just as it was about to demolish the orange. No! No! No!

The next day we were going to take a walk to the library.  She broke free from the grip I had on her hand, and ran across 4 lanes of traffic. Scream! No! No! No!

Later in the evening, while watching television, Marie climbed onto my husband’s lap, where she attempted to rub his “private parts” and kiss him.  SUPER BIG SCREECH!  No!  No! No! Oh!  This child was so “bad”!  WHAT was I going to do with her?

At the end of the week, I went to Marie’s school where she was part of a dance performance.  I was glad to be able to be there, as her birth mother had never been seen at the school before.  I watched with pride as she danced and twirled, often sneaking a peak at me to see if I was looking.  When the dance was over, I saw her talking (signing) with another student who commented that Marie had a new mom, and how did she like her? Marie looked over at me for a minute and crumpled her nose, telling her that all I ever do is scream and say No! No! No! I was shocked.  I had never thought of it before, but she was right!  I was so busy chasing and correcting her that it would seem like all I did was scold her.  And what was I scolding her for?  For what I, as a middle class mother, think is wrong.  I had never taken into account that Marie had been raised to do all of those things…to steal food, to take what she wanted from stores, to litter, to be sexually promiscuous (at the age of SIX!) and to have no worries about safety, thinking she was invincible.  This young child, who had lived on the streets and managed to survive without any parental care, just parental abuse…WAS invincible! She did what she needed to survive.

I was so embarrassed. Embarrassed because I was judging her by my standards and not stopping to think of what her standards were.  I vowed never to scream No! No! No! again, but to explain things in a loving manner to her.

We do not steal.  If you want something, I can probably buy it for you.

We do not run into streets with cars, use butcher knives, or slide down escalators.  It is not safe.

We do not just throw garbage on the ground, but in our family we pick it up and put it in a garbage can.

And, most of all, there is no need to make money by being “friendly to men”.   We have plenty of money so you don’t have to do that.  And it is not fair that you had to do that instead of just being a little girl. And you never have to do that again.

Marie did not change overnight, but each time she would fall back onto old habits such as stealing or being unsafe, I would lovingly explain why she no longer had to do that.  She had a family that loved her and it was our job to keep her safe.

Then there was the time when, walking in the mall with a soft drink in her hand, she unwrapped the straw and threw the paper on the ground. My eyes widened, and she laughed when she saw my reaction.  “I was just teasing you” she signed.  “I know I don’t litter in this family….” 

No more screaming from me…

 

 

Link to my book  The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

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

 

 

 

 

Is God at Fault for the Tragedy in Connecticut?

Like the rest of the nation, I have been saddened by the tragedy at the school in Connecticut.  All of those poor children and adults who are dead.  It is very mesmerizing for the nation, and feelings are raw, trying to find someone to blame to make sense of it all.  People are blaming God.

I have learned in my own life that tragedies happen every day.  Children are terminally ill.  Children are struck by cars and killed.  Parents abuse children beyond the scope of the normal imagination, (just ask my own beautiful children.)  Tsunamis strike.  Floods devastate. FAmines consumer whole countries. Earthquakes destroy communities and people.  Murders and domestic abuse happens.  I am sure that you can think of many, many more tragedies  that have happened, and many more will.  It is awful.  It is saddening.  It is unbelievable, and as humans we naturally look for someone to blame.  Maybe there IS someone to blame in some circumstances, but God is not to blame.  To attribute His involvement with us to cause every disaster is ludicrous. For which disasters should He take blame…natural ones?  man-made ones?  And how large of a disaster should he take blame?  Where many people are killed?  Where only one is killed?  Where people are very ill and suffering?  Where I get laid off from a job and have no money?  Where I have blister on my big toe?

My point is, it is not God’s fault.  We are placed on earth with our own free wills; on an earth that has always experienced natural disasters.  We are actually lucky that we have not been wiped out completely by a wayward asteroid similar to the one that made the dinosaur distinct!  But if we were to be destroyed, the ultimate tragedy, it would not be God’s fault.  He loves us.  We are all His children. He mourns when a child is severely hurt, a woman is a victim of domestic abuse, when houses and lives are destroyed by natural disasters, and when people are suffering. But if He were to intervene, then we would be but His puppets placed on this roller coaster of ride called earth. God may be Almighty, but that does not mean that he takes over for His children or his earthly creation.  That would  not fit the description of “life”.

Yes, I am greatly saddened by the Connecticut massacre.  People may disagree with me vehemently, but I have empathy for the actions of the killer, who obviously was mentally ill. To have reached this stage of his life with such bad thoughts, (similar to the demons which cause violent actions from two of my own children,)  is a also a tragedy. This incident took not only the lives of the children and adults murdered, but the life of a young man who will forever be vilified for his actions. It is a tragedy all around, and God is mourning with us.

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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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I KNOW there is a heaven.

I generally try to write upbeat posts…that with whatever difficulties we have, there is always something good to find.  This post will be different than the rest…it will be about my younger brother’s death.  It won’t be upbeat, but there is something good that has come out of it.  I KNOW there is a heaven. Without a doubt.  Proof positive.

My brother, for those who are unfamiliar with my “life story”, was born during the Rubella days.  My mother somehow contracted German measles while she was pregnant with him and he was born legally blind, severely hearing impaired, (almost deaf by the time he died,) severely developmentally delayed, with a cleft palate.  His life with us is what taught me such tolerance for individuals with disabilities.  My brother was disabled, but he was a joy to be around.  He had simple pleasures that made him smile, and to me, he life was as worthwhile as anyone else’s.

He was wholly incorporated into our family life and he did everything with us.  When we traveled extensively, his favorite activity was paying the toll at the toll booth.  My father would drive up to the booth so Curtis’ hand could reach the booth, and give him the money to put in.  He took great joy in reaching out to feel the basket and put the money in.  I swear my father always took the turnpikes with tolls solely so Curtis could have fun paying.

Around the time I grew up and got married, Curtis developed schizophrenia.  The simple pleasures he had in life were replaced by demons and aliens telling him to do things.  Curtis, ever the obedient soul, started to wander the streets in the middle of the night doing what these voices instructed, and there came a time when my parents had to place him in a group home.  We were fortunate in the fact that it was a wonderful group home, full of caring staff, and they took excellent care of him.  Every Saturday my mother, my kids and I would pick Curtis up and take him out for the day, usually to the mall to walk around.  He loved malls, especially riding up and down the escalators and elevators.  To be so joyful doing something so ordinary was one of his gifts.

My mother, who was very spiritual and had several supernatural experiences,  passed away two years ago, in November.  (Note a reblog I’ve attached following this one entitled Angels Among Us.)  Although we missed her terribly, my children and I continued our outings with Curtis.  All of my children loved him and would often argue who would sit next to him, or who would be his sighted guide. Their immediate, natural attachment to him amazed me given his severe disabilities and his disfigured head.  (His head was flattened on the back and he had huge ears that stuck straight out to the side.  My daughter who is deaf gave him the “sign” name, one that usually highlights a person’s individual characteristics, of Uncle Ears.)

We continued to take him out and he appeared to have his same zest for life until October of last year.  All of a sudden, his skills began to decline. Numerous medical tests were done and he was determined to be perfectly healthy.  At the mall, although he always had shuffled along when he walked, his shuffling turned to dragging his feet, then losing his balance, then having to use a wheelchair to get around.  Again medical tests.  No medical reason for his decline.

I remember guiltily the last time I took him to his favorite mall.  He was in his wheelchair, but I left the footrests in the car, assuming he could pick his feet up or shuffle them along.  I knew I was in trouble when I purchased his favorite ice cream with strawberry sauce. Because  he had lost the ability to feed himself,  I spoon fed it to him. He started to spit it out.  He didn’t want it!  His favorite thing to eat!  I new I needed to get him to a hospital, but had to bring him back to the group home first because they had his medical records. When I tried to push the wheelchair, his feet stuck to the ground. He did not lift them or shuffle along.  They just hung there.  If I pushed it forward, his feet would get stuck under the wheelchair.  With tears stinging my eyes, I did the only thing I could do to get him out of the mall.  I turned around and pulled the wheelchair backwards.  I could hear the thump thump thump of his feet on the ground and I started to cry in ernest. I had to pick him up to put him in my car, and he slumped over to the side with only the seatbelt keeping him from falling over.  It was obvious he had declined to the point that neither I nor the group home could take care of him. We took him to the hospital where he was admitted and again found to have no medical problems so he was placed in a nursing home. It was difficult to find a nursing home that would take him due to his numerous scary diagnosis; deaf, blind, schizophrenic.  He ended up in a less than perfect quality facility.  Due to frequent attacks of anxiety, when I first visited him I found him in restraints and his hospital bed mattress on the floor.  They were concerned that he would fall out of bed, so the had removed the actual bed and just left the mattress. He was alone, and a tray of food uneaten, (unseen by him) was in the corner of the room. They would come in and poke and prod him, give him medicine and needles, never treated him like a valuable human being.  He could not hear what they would say, the needle would pinch him, a blood pressure cuff would take readings, the thermometer would be used to take his temperature, and all of this would come at him out of the darkness and he did not know what was going on.  No wonder he was anxious!

Recognizing that with the swiftness of his decline he did not have much longer to live, I made the decision to stay with him at all times. I had to preserve his dignity.  We had done all we could so he could live a happy, dignified life, I could not abandon him at the end of that life.  With my being there, he no longer needed the restraints. My husband valiantly cared for all of the kiddos at home while I took care of my brother.   I spent my days sitting in his private room trying to coax some food into him.  When he wouldn’t eat the food they gave him, I would bring ice cream, pudding, applesauce and other things I knew he would like. I would lay on the floor next to him and rub his back or his arm, like we used to do.  If he could not see or hear me, I am sure that he could tell by my touch that I was there.

Within a week, we knew that he was fading away quickly.  My brother, who despite his disabilities had been as healthy as a horse his whole life, was dying and there was no medical reason for it.  Then I learned the reason; on his last night, while I was rubbing his arm, he turned to me, opened his eyes so wide it seemed as though he could see me, and he said plain as day, without the almost unintelligible garbled speech he used to have, “Mom is calling for me.  I will be going to heaven soon.” Then he shut his eyes and never opened them again. He died exactly one year to the date as my mother.

Yes, there is a heaven.  I know because my brother told me.

For those who might want to read more about my incredible family, the e-book The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane is available on Barnes and Noble, Amazon and I-Books.

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