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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Angels Among Us

First blogged January, 2010

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

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

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

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

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

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

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

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