Posts tagged ‘family’

“God Don’t Make Junk”

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This used to be my mom’s favorite saying. She believed it all of her life, but never as much as she did after the birth of my brother, Curtis. When she was pregnant with him, she was unknowingly exposed to German Measles, thus affecting him with Rubella Syndrome.

Curtis was unfortunate to acquire all of the accompanying diagnosis; he had a severe hearing impairment, congenital heart disease, an intellectual disability, an odd head shape (like a smooshed pear,) a cleft lip and palate, autism and was legally blind with crossed eyes that wiggled back and forth. (Additionally, when he was a teen, he developed schizophrenia, but that’s for another story…)

Because I was only 4 when he was born, I thought he was the cutest thing in the world! He was my BROTHER, after all. I delighted in feeding him formula through an eye dropper, trying to quell his kitten like hunger cries. I loved to rock him in the rocking chair, all bundled up and warm. He was a delight to me!

Curtis’s life in our family was as amazing as mine. Loving, adventurous, interesting, and accepting. Anywhere we went, I would explain to quizzical stares that he was born like that and he might look different, but inside he was the same as everyone else. In fact, he had an amazing sense of humor and would laugh at anything! He loved to eat peaches and watch Sesame Street. As I extoled my brother’s virtues, I could see their stares soften with understanding and acceptance.

The “gawking” role was reversed when I was a parent, and this moment is etched into my mind. Francis and I were at the zoo. He must have been about four years old because I remember pushing his sister, Dinora, in a stroller. Nearing a pen of vastly ugly pigs snorting mud, Francis exclaimed, “Look, mom! One of the animals got out of the cage.” I looked over and saw a horrified mother with a toddler in a stroller. A disfigured toddler, with a gaping mouth like Curtis used to have. And the child was snorting bubbles and drool. Taken aback and horrified by what Francis said, I took his hand and we walked over to the stroller. I smiled at the mom and told her what beautiful eyes her child had! I asked her if it would be okay if we touched him, and Francis and I leaned over and gently rubbed the child’s chubby little hands, which opened and closed in excitement. “He really seems to be enjoying the zoo!” I said, as we parted, smiling knowing little smiles at each other.

I then took Francis aside and explained that God makes all types of children, and “God don’t make junk!” His observational comment was an innocent one, (especially because he is legally blind,) but it provided an opportunity for a valuable lesson.

Every mother wants to be proud of her child, and to have others share in her positive feelings. Every child is a joy! Imagine yourself in the mother of a disabled child’s shoes. Have empathy for that mom. Join in her admiration of her child, and maybe you will also internalize the concept that “God don’t make junk!”

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For more stories about Curtis’ childhood and our adventurous family, 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 Do the Blind See a Tree?

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Most people can look up and see a tree.  To a child who is blind or visually impaired, their concept of a tree is the bark they can feel. Their concept of a tree is that it is” rough”.  If they have some vision, they can tell that a tree is brown at its trunk, but “a blob of green” above the trunk.  They could grow up and their whole lives not know what a tree “looks” like.  Expanding such basic knowledge of their world is called expanding the core curriculum. It consists of concepts that are not taught in school, but are still important lessons for that child to learn in order to grow up as an educated adult who is blind.

One topic covered by the nine students, ages six through thirteen, at an April vacation program, was the concept of trees and their differences.  During a nature walk, students found that some trees were so small they could fit their hand around the trunk.  Some trees were so large that it took all nine students holding hands to encircle the trunk. Some trunks were very rough, with deep groves, and some were smooth, with little lines barely traceable by their little fingers.

They learned that evergreen trees stay green all year, and they giggled as they carefully touched the sharp needles. They never knew that trees could be so prickly!  Under the tree, they found the pinecones from which a new tree may grow.

They learned that oak trees, in the spring, have no leaves.  They closely examined the branches of an oak with a few dead leaves still attached, carefully feeling them and making the connection with the leaves they see on the ground in the autumn. Acorns which were still attached to the tree branch were felt with much enthusiasm.  They had collected acorns from the ground underneath the tree, but to actually see it attached seemed to be a surprise. They felt the new buds on the ends of the small branches, buds which would soon bloom into leaves.

Students learned about flowering trees, in full bloom during their springtime visit.  Most students were amazed that a tree could have flowers.  In their minds, trees and flowers were two entirely different things.  But there they were; pink blossoms on the end of a cherry blossom tree branch, gentle, sweet smelling little flowers.

As they were feeling and looking at the trees up close, students were in awe.  So many different types of trees!  And they would not describe a single one of them as “rough” because they were finally able to look beyond the bark.

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(I apologize, it has been a busy summer and this is a repost from 2 years ago.) For more stories about children who are blind, 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

A Whole New Meaning to “Swimming with the Fishes”

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I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

 

If you are interested in reading more, I have written an e-book entitled The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane  available at I-Books, Amazon, and Barnes and Noble.

Mothers, Help Your Sons Grow Up to be Fathers…

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My oldest son, Francis, grew up amongst a caravan of foster brothers and sisters. Specializing in newborns and infants who had been affected by prenatal drug exposure and addiction, our family was usually comprised of my husband and myself, Francis, his sister, Dinora, who had been adopted from Guatemala, and one or two foster babies. Despite the fact that Francis is severely visually impaired, he played an active role in child care, frequently holding a little one, feeding a bottle and changing diapers. When going to the mall, he and his sister would proudly push the double stroller. (With the 2 of them, he could be a pusher without having to see where he was going…) Throughout his childhood, sixteen foster babies lived with us, and caring for them was just a fact of life.

Francis is now an adult with a Ph. D. from Cambridge, a well paying dream job, a wonderful wife and a cozy home complete with a grill for grilling steaks and a lawn to mow. And, as of three weeks ago, a newborn baby. My week spent with his little family renewed my faith in the power of what is learned in childhood. Without even knowing it, I had trained Francis how to be a good father! He bundles his little girl up in a baby blanket, like I had bundled up those babies who were going through withdrawal. Newborns like being in a tidy bundle because they arrive with strong startle reflexes and without much control of their arms and legs. By pulling her arms and legs in close and securely wrapping a blanket around her little body, baby India can feel safe and secure. When she is awake and alert, Francis rocks her and sings songs to her, songs that he heard me sing so many years ago: “Itsy Bitsy Spider”, “Hush Little Baby,” and “The Wheels on the Bus Go Round and Round”. Even though she couldn’t possibly know the songs, the sound of his voice quiets her, and these songs are easy to sing. When he is expertly changing her diaper, he plays “This Little Piggy” with her toes, gently pulling her feet to his mouth to kiss. He exaggerates the “wee wee wee home” by tracing his finger from her toes to her chin, tickling her slightly before kissing her forehead. And while she sits in his arms on the couch, ready for bed, he reads her books with very large print; “Goodnight Moon”, and “Five Little Monkeys Jumping on the Bed”.

On the evening before I left to fly home, he looked over at me and thanked me for giving him the opportunity to practice on all those babies years ago. All of his friends are having babies now, he said, and they are all in a tizzy. Because of the practice HE had, he is a confident parent and not at all nervous with India. I realized that by being a foster parent to infants, I was not only caring for little ones, but also nurturing parenting skills in my oldest sons, skills that will ensure he will be an awesome father!

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For more stories about Francis childhood and our adventure with foster children, 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

Just Call Me Marshmallow Head!

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My oldest son, Francis’s wife just had a baby. Being a thrilled grandparent, of course a trip from the Northeast to California was in order!
Exactly 23 hours and 50 minutes before my flight, I dutifully “checked in” with Southwest in order to get a boarding pass with a “low number”. For those unfamiliar with Southwest Airlines, passengers are boarded according to the letters and numbers on their boarding passes, Letter A, 1-60, Letter B, 1-60 and Letter C-1-60. You can only register 24 hours or less to get a boarding pass, so I try to do it as early as possible in order not to get stuck with a high letter/number. It never ceases to amaze me that calling in at 10 minutes after 24 hours yields me the combination B-10. How could 70 people have checked in before me? Was everyone else sitting at their computers at 5 in the morning just waiting for that magic moment when their prize would be a low number? But I digress…this system is only mentioned because it will pertain to an issue which will occur later in this post.

Anyone who knows me knows that I get motion sickness very easily. (Almost my entire childhood was spent sleeping in the backseat of my parents station wagon as we traipsed across the country.) My plan was to sleep the entire 7 hour flight to California. (Another talent of mine is to be able to sleep anywhere, anytime, a skill that came in handy in college where cat naps were caught on the couches in the student lounge between classes.)

My sleep technique is somewhat unique…I can only sleep if a pillow is wrapped around my head. Yes, a pillow wrapped around my head. Tightly, so as not to let in any light. Using a king sized pillow with some of the feathers removed, one end of the pillow goes under my head, the pillow is wrapped around the front of my head, and the other end of the pillow is secured behind my head. For those unfamiliar with my technique, it looks as though smothering myself is a possibility, but an air hole from my nose down to the bottom of the pillow is created. Sleeping my way to California would be no different. Dragging my pillow onto the plane the next morning, I settle into my window seat waaaayyyyy at the back of the plane. (There is always the possibility that the plane won’t be full and I could have the whole seat to stretch out on to sleep. Alas, not so lucky this time.) Settling in and maneuvering my pillow strategically around my head, I became comfy. Because I put my own comfort first and don’t worry about what others think, any references to the appearance of “Marshmallow Head” would not hurt my feelings. As I sat there, cozy and drifting slightly off to sleep, I could hear the usual commotion of the “onboarding” of the plane. Most of the seats have been filled except for the unpopular middle seats. At this late stage of boarding, three different sets of couples found themselves in the back of the plane trying to get seats together. Their seat numbers were probably in the C-45 range. As they moaned and groaned about being separated, the stewardess ordered single people to change seats. People like myself who had obtained earlier boarding passes were being directed to move into those vacant middle seats! I feigned sleeping; it would have been upsetting to sit in a middle seat in which my pillow manipulation would have been unsuccessful, especially for a flight of more than 7 hours. One kind gentleman who gave up his window seat to sit in the middle seat next to me, instantly regretted his choice. The woman in the aisle seat had obviously had one too many to drink, and she slurred her words as she chatted to him, providing him with a non-stop foray into the dysfunctional family she called her own. As I woke intermittently throughout the flight, and she could always be heard talking about one thing or the other. I was filled with sympathy for my poor seat mate who had no place to escape and no pillow on which to feign sleep.

The flight was otherwise uneventful Of course, I could not know for sure because I slept through most of it…

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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

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!

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

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