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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Comments on: "I KNOW there is a heaven." (21)

  1. stephie2010 said:

    Awww. I’m sorry. God bless.

  2. I am so very sorry for your loss. Thank you for visiting my blog, I wanted to visit yours also.

  3. I’m very sorry for your loss. Thanks for sharing this with us.

  4. I am a public school teacher who found your blog by accident while searching for a lesson idea on a different topic entirely, and I am abundantly grateful that I did. I have to tell you how deeply touched I am by your loving portrayal of your brother and the love you gave him throughout his life. Your words made me feel as if I, too, knew Curtis.

    My own mother, who died in 1999, lived a very full life from a motorized wheelchair due to a genetic bone condition that I inherited from her. She never let her condition stop her from leading a productive life, and she taught me by example that a wheelchair is nothing more than a means of transportation from point A to point B, as opposed to the impediment to success that many in the “normal” world seemed to think it was. When she passed, I too saw many signs that proved to me that there was, indeed, a heaven.

    In addition to a full-time teaching career, I also care for my elderly step-father who has several health and memory problems. Like I can tell you felt with Curtis, I feel that caring for my dad in his golden years is not an obligation, but rather, an honor.

    For these reasons and more, you blog post truly touched me and came as just the right words at the right time. Your articles are wonderful; they embody the very ideals that people need to embrace when teaching students with challenges.

    Don’t ever stop writing!

    • Thank you so much. If’s because of my relationship with my brother that adopting children with disabilities seemed natural. I’ve lead a happy life!

    • It sounds like you have your hands full with your step-father. I think it is so difficult as people age and pass away, but we do learn lessons from them. I am sure that that love will stay with us forever!

  5. This is such a touching post, so beautifully written with real openness and honesty…Just shows that even though we are all suffering in one way or another, some outwardly, some on the inside, love is always the most important thing. It doesn’t always save lives but it makes a lifetime of a difference. You are obviously an incredibly strong, loving, generous, conscientious, and compassionate person…the people in your life are truly blessed to have you. Thank you for sharing.

  6. Thank you for your kind words on my blog. And thank you for sharing with such honesty about Curtis. He lived a remarkable life.

  7. Oh my goodness. What a beautifully written tribute to not only “Uncle Ears” but the testimony of the love and acceptance you learned through your family.

    Thank you for writing this.

  8. objectpermanenceblog said:

    This is incredibly moving. Thanks for sharing his (and your) story.

  9. There I no words I can write, but know that this post brought both smiles (especially ‘Uncle Ears’) and tears.

  10. Thanks for sharing you and your brother’s powerful story. It really made me sad, but also glad that there are people that see beyond the surface.

  11. Hi- I’m Deaf and have 3 young children with different abilities- one is Deaf, another is hearing and my youngest is Deafblind. I’d have done the same thing you did for your brother, Uncle Ears. It is scary, especially in a hospital or care facility that knows nothing about or doesn’t have the time to be mindful of the needs of a Deafblind individual. My Deafblind son has been in the hospital 3 times and I did not want to leave his side for 2 major reasons, he’s my son, he’s Deafblind. Uncle Ears was so lucky to have you for a sister.

    • Thank you so much for your kind words. I am amazed at all of the new technology out there for individuals who are deaf/blind. Perkins School just started a new national program of purchasing telecommunication for individuals who are deaf/blind, including I-Phones with Braille outlay. Amazing stuff is coming along!

  12. I was crying by the end of this story. What a wonderful person you are. Your heart is big and kind and amazing. It is so encouraging to hear stories like this one. Even when faith is strong and science continually tries to discount the idea of God, sometimes an experience like this is the encouragement we need to keep on believing. God Bless you and thank you for sharing this personal story!

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