I begin today to chronicle my daughter Johanna’s journey to health again as she battles Ovarian Cancer. She’s the only one of our children who went into the medical field. Funny that when she decided to become a nurse, she changed her mind and remained a CNA. She decided at that time, many years ago, that she wanted to write. But she has seen things that I am not able to bear. Now she is experiencing what she has helped other to cope with – illness – cancer – Ovarian cancer.
Here’s a little tidbit of humor, I think and a true story. She called me excited as can be. Her entire class went to the Cadaver Lab in the city. They were all dissecting a human body.
Johanna: Mama, guess what?!
Johanna: We are all here at the Cadaver Lab and I got a chance to take the eye out and dissect it. I held it in my hand. That was so cool.
Johanna: Okay, Ma, I gotta go. They are about to take out the brain. Bye.
Me: (after she hangs up) stuttering.
Go with me as I, from time to time, give you a glimpse along her journey back to health. I hope that as you journey with me, that you will re-evaluate your own feelings towards your friends and loved ones and realize that people are people and in the end we love them. Don’t be afraid to admit that you love the estranged individual. It’s healing for your soul.
Johanna is a twin. She and her sister are fraternal twins. She was born weighing an entire pound less than her older twin sister. It was funny, I ha a cesarean section and when they brought her out she was sucking her thumb. I see her right now. She was the one who would stay woke to make sure I made it home, even as a baby. I was working and going to school then. Her twin and older sister tried to remain awake, but Johanna always gave me a big toothless smile when I came home. I looked forward to that smile.
After having made an appointment with a child neurologist per the professional from our county’s Early On organization, I found myself sitting in the neurologist’s office with Jonathan and one of my daughters. Because Jonathan wasn’t speaking, we began using sign language with him so that we could at least help him communicate a little bit. The sign for eat he picked up real fast!
His neurologist examined him and then asked me a battery of questions:
Does he like or seem obsessed with zippers or buttons?
Does he line his toys up?
Is he obsessed with certain toys?
Do certain sounds upset him?
He asked other questions about Jonathan’s behavior, but those are the ones I remember most. I answered yes to all of the questions. I remember that my daughter and I were amazed that the doctor never having seen Jonathan before knew all about his behavior. The doctor smiled at me and after a little more interview he said: “Mom he is autistic.”
My question: What is autistic?
Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.
My world came crashing down around of me. I was frightened, not knowing what autism was. I was uncertain as to whether I could help him. I immediately began to worry about his future. I was devastated inwardly. I was quaking outwardly. This little boy, who trusted me and my husband completely had a condition that I knew nothing of. He needed us from the outset of his life, and we were there. He needed us now—I was there but didn’t know what to do. I wondered would he ever speak. More tomorrow.
When you get over the initial shock, take a breath and plunge right in. You won’t drown.
I want to begin today a series on my autistic grandson. There are many who are challenged with ASD and my grandson is one of them. The journey has been difficult for him and for me, but the rewards have been just as numerous. Please, join me as I travel Jonathan’s Way.
Circumstances lead to my husband and I raising our only grandchild. We had already raised six children – four girls and two boys. They were all grown or a year from it, and we found ourselves as empty nesters. I was so happy about it. I would joke with some of our friends that since we were alone in our home, that we’d get a motorcycle and travel the country. (That sounds good right now). Well, when one day we found we were going to be grandparents, it was novel. At the ripe age of two weeks old we saw our grandson and the feeling went from novel to wonderful. We were truly transformed into grandparents, and I vowed to spoil him. That wasn’t to be.
Without going into a long story, we wound up with him just for his protection when he was two months old and officially since he was seven months old. So, I put the motorcycle trip on the back burner and said, “Oh Well” and began raising another child when I was 52 years old.
At 12 months old, exactly 1-year-old, he walked. He began walking the day he turned a year old. I noticed at that time that he started walking on his tip toes. I didn’t think anything of it at that time. “A dysfunctional vestibular system, a common problem in autism, may be responsible for toe walking.”
As far as I knew, it was cute. In fact I never knew anything was wrong with his toe walking until he was 2-1/2 years old. That’s when I began to travel Jonathan’s Way.
More tomorrow, but please share with me the way you have taken with any special needs person you know and love.
I’ve been out of commission because of a project that has taken almost 8 weeks to complete. But today, I pause to honor all those men and women who gave their lives for us to be free.
REMEMBER: ALL GAVE SOME AND SOME GAVE ALL.
We salute you and honor you, not just today, but everyday.
Here’s a tidbit of history:
The first widely publicized observance of a Memorial Day-type observance after the Civil War was in Charleston, South Carolina, on May 1, 1865. During the war, Union soldiers who were prisoners of war had been held at the Hampton Park Race Course in Charleston; at least 257 Union prisoners died there and were hastily buried in unmarked graves.Together with teachers and missionaries, black residents of Charleston organized a May Day ceremony in 1865, which was covered by the New York Tribune and other national papers. The freedmen cleaned up and landscaped the burial ground, building an enclosure and an arch labeled “Martyrs of the Race Course”. Nearly 10,000 people, mostly freedmen, gathered on May 1 to commemorate the war dead. Involved were about 3,000 school children, newly enrolled in freedmen’s schools, as well as mutual aid societies, Union troops, black ministers and white northern missionaries. Most brought flowers to lay on the burial field.
This was the first Memorial Day. African Americans invented Memorial Day in Charleston, South Carolina. What you have there is black Americans recently freed from slavery announcing to the world with their flowers, their feet, and their songs what the war had been about. What they basically were creating was the Independence Day of a Second American Revolution.
If it’s true what they say, that 80 percent of success is showing up … Most often attributed to Woody Allen, the maxim “80 percent of success is showing up” has earned its place in the collective cultural consciousness. But, how does one actually “show up,” and is it as easy to do as it […]
I normally try to write posts that have a lot of meaning and encouragement. I love that; and I love the fact that others share with me and support me with their wonderful words and blogs, too. But today, all I can say is:
IT’S OUT ON BLU-RAY AND DVD. HERE I COME WITH MY POPCORN! TALK TO YOU LATER! “THE FORCE IS STRONG IN THIS ONE!”
Since I’ve joined the ranks of writers, I find that most anything I focus on can get me in the mode of writing. But most of all the things that I like get my creative juices flowing. Ambiance is the mood, the character, the quality, atmosphere or tone that surrounds you and triggers a reaction in you to do. I am traditional where most furnishings are concerned; but also I am affected by the weather. It’s raining outside my window as I type this post. I appreciate the grayness of the sky. It puts me in a very serious mood and I think of the book I am penning right now. I try to make sure to get my motivation from the things that makes me react to my surroundings. I love a chair with a light on a table in the evening – it triggers my creative juices, as well.
I believe you have the idea and I believe that you have a book or poem or devotional or manual in you from your own surrounding. Let’s get going. I am excited for you, and I believe in you. Remember, too, that I am here for you.
Have you ever regretted doing something or not doing something? I have. I wished that I would have continued with my studies in opera singing. I could have gone back to it, but never did. That’s just one thing that I regretted. There are a few more, but my point is that when it comes to writing and publishing that book, completing that poetry collection, those short stories that you have tucked away in a drawer or closet that you’ve had for such a long time, and finishing that dissertation to get your deserved degree, you don’t have to regret it. Actually, these are goals and dreams that you can realize at most any time, like right now.
There is no particular time to seize the opportunity, but there’s nothing like right now. Consider people gone before you and me who would have been obscure save for the fact that they left something behind for the world to grasp. Be that person, be that someone. Complete that great literary work and send it to me. I’m always here for you. You don’t have to miss your opportunity.
My grandson was 18 months old and he still hadn’t said a word. I noticed it, but decided to give him until he was 2 years old to be certain he wasn’t just a slow starter. Well, at 24 months old, I took him to his pediatrician and the doctor sent us to the right people to have him evaluated. Once the proper tests had been done, and the neurologist examined him, it was determined that he was, in fact, Autistic. Well, I panicked because I never had to deal with that condition. I didn’t even know what it was. I really didn’t know who would help us either. Thank goodness for people who specialize in these types of situation with special needs children. The school reps came out to our home and immediately put my mind at ease, letting me know that they did know what to do. First of all they put him in pre-school. After about a week in school, the first words he spoke were, “NO” and “STOP”! That was music to my ears.
Fast forward nine years and he is 11 years old sitting right next to me as I do this post playing his violin and passing gas and laughing about it. It’s still music to my ears. He’s faced a lot of challenges, some that made me cry. Who knows what’s to come? But he is still the joy of our lives and he has given us lasting memories.
Talk about memories: My eldest daughter is 38 years old. But once she was 5 years old and she was watching a cartoon on T.V. She came and asked, “Mom, can I have a Ahhple (apple)? I got one for her and washed and wiped it. I told her, “Whatever parts you don’t eat, bring them back to me,” (I was expecting that she’d bring me the inside, seeds, and the core). Well, when the cartoon was over and she came back to me, she handed me the little stem, that was all. I looked at her and asked was there anymore. She said, “No”. So, I said, “Oh”. Apparently, it didn’t do her any harm, because she grew up to be a great business woman.
5-year old apple core eater Erika 38-year old Business Woman Erika
Before you think that you can’t write a book, just gather those childhood memories. You’ll find out you’ve got a wonderful and heartfelt book in you. Just put it on paper and then send it to me when you’re finished. I’m here for you.