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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My Brother Says Goodbye…

I took my brother who is developmentally delayed, legally blind, autistic, profoundly deaf and schizophrenic to visit our mom for the last time before she passes away.  I was worried about how it would go.  We walked into her room and she lay in bed.  She seemed to perk up a little when she was told Curtis, her beloved son, was there to visit with her.  She didn’t perk up enough to open her eyes, but she did start to talk, albeit mostly nonsense.  Curtis held her hand and rubbed her back.  He was talking to her, and because he could not hear, he did not realize that she was not really talking to him.  He was talking about himself, of course.  Was there a restaurant around the nursing home where I could take him to eat?  Did they have pie?  He then went and got her a soda from the soda machine and opened it for her.  Soda is Curtis’ most prized item.  He gave it to her, saying he wanted to do his best to make her last days better.  He then told her she was lucky because she had the pleasure of his visit because he was good company and he rubbed her back.  After an hour or so, I had him say good bye.  Not being a demonstrative person, he did not know how to hug.  I felt it was important for him to hug her and kiss her good bye, so I helped position him so they could hug.  It would have been laughable under any other circumstances.  He was stiff like a robot and clearly was not comfortable showing affection.  So he took her hand and shook it, and said “It has been nice to know you.  Let me know when your funeral is because I might want to attend!”

On the way home, Curtis was quiet for a while.  He said “Something has been missing all week and I didn’t know what it was.  Now I do.  I was afraid I would miss saying good- bye to my mother.  Today I was able to give her a soda and rub her back,” (2 things she had always done for him when he was sick.)   “I feel better now.”  This was such a profound statement coming from someone who usually did not think rationally.  Of course, true to his character, he asked to stop for pie.

I Miss My Mom…

This entry will not be about my kids.  It is entirely about me wallowing in sorrow over the loss of my mother.  No, she is not dead, but she has become ill with dementia and today was the first day she did not recognize me.  My “mommy” is gone.  I suddenly have great empathy for those who have lost their parents.  Because I did not have a great relationship with my dad, I was sad to see him pass away, but I did not feel the sadness I feel now.  My mom used to come over and help me with my kids.  She made me custard pudding, (my favorite.)

She has taken me and the children on many vacations and we had great fun!  Costa Rica, Guatemala, Belize, London, and the Grand Canyon.  She loved to travel and we were more than happy to keep her company.  She liked to go to places where she could really experience a unique adventure.  We stayed at a resort in Costa Rica where we were the only non-Costa Rican people there.  NO ONE spoke English.  We spent the week laughing hysterically at this “problem”.  We ate Costa Rican food, (boiled turkey, roasted rabbit, and lots of great fruit.) She and Dinora took a white water rafting trip, level 4.  My mother had always wanted to go white water rafting.  She did not, however, know that she was going to get wet. There she was in her long pants, socks, sneakers, and sweatshirt, standing next to Dinora in her cute little bikini.  Of course the raft flipped over a few times, and it was a good thing my mom had her life vest on because the weight of her clothing would have pulled her under and she would have drowned for sure! During our trip to Guatemala we stayed at out-of-the way places.  At one place, they did not have electricity and no built in heat or hot water.  We were given a “manservant” to keep our fire running and to heat hot water for a bath.  And on our long trek up the mountain to get to Mayan Ruins, we were all exhausted.  The guide said to watch out for jaguars which lived in the area.  My mom, who was exhausted from the climb (at age 80) said “I almost with a jaguar would get me so that I could lay down.” In Belize, we went to a zoo that had chicken wire fencing around the animals and we almost lost pieces of Steven a few times when he reached his arm into the flimsy cages to pet the lion or the alligators.  She came with us on the trip to London to settle Francis in at Cambridge University.  We spent several days sightseeing.  We ate pigeon.We ate pigeon and we had tea every day. My mother cherished the tea set.  I bought it for her from the inn where we stayed.  I told her it cost $25 (because she was always against spending money on “things”.)  I actually paid $250 for it…One fear of mine came true…I have always had this fear of being poked in the eye with an umbrella, so I would never use an umbrella.  During a double decker bus tour of London, we stopped at Buckingham Palace.  As it was raining, my mother had an umbrella and I didn’t.  Francis took a picture of us, and just as we said “Cheese”, my mom poked me in the eye with the umbrella.  And I have a picture of it! My worst nightmare came true and I lived to tell about it.

My mom has the most beautiful insides of anyone I know.  She was always upbeat, optimistic, encouraging and pleasant to everyone she met. She never ever had an unkind word to say about anyone.  She always took the “high road”, and she has devoted her life to making life better for my brother, Curtis, who is developmentally delayed, legally blind, and totally deaf.  She always felt guilty because he went to live in a group home.  You could not convince her that he had a full and happy life living with 3 other guys.  A great deal of her dementia has including her insisting she was going to take Curtis home to live with her.

She was my role model, my cheerleader, my friend, and she always took care of me.  And now I have to take care myself.  I know I am selfish, but I don’t like it very much!  I feel so sad to see such a vibrant, bouncy, vivacious woman slowly slip away.  I try to visit almost every day, even if she is “out of it” and I just sit there and rub her back or hold her hand.  When I leave, I always hug her, kiss her, tell her I love her and that she’s the best mother in the world. She has always told me she loves me back.  Not today.  For the first time, she didn’t know who I was. I feel lonely.  Scared.  I miss my mommy…