1/5/2014 6:01 AM
Hey Red, not sure if I'm one of the supers you were aware of or not. I think I might of share this with you privately before, but thought it might be appropriate to share my son's story from my book of memoirs for my grandchildren.
EVANSENT
I don't know when exactly I became aware of my desire to carry on the family name. All I know is that I was the only male Brown in my family, as was my father, and his father before him due to his brother dying without having a son. I had a self imposed fear that I might be the end of the line. I'm well aware that there are more Browns than Jones' now in this country but I like to think Browns are like snowflakes whereas no two are alike.
Evan was the 13th child born at a midwifery clinic outside of Quarryville, PA.; I always referred to it as a pig farm due in part to its close proximity. He was our second born child and first born son. Evan had a normal delivery and because he was a boy, people told us we had "the million dollar family". They said that because now in addition to Melodie, we had a son and that was societies ideal. Everything seemed normal with Evan until the day after he received an infant inoculation from his pediatrician. He had a seizure at home and turned blue for a little while until he came out of it. (Medical studies have shown that there is no correlation between a mercury based childhood inoculations and mental impairment so we'll just say it was a coincidence and use the timing as a point of reference). The ambulance took him to the hospital and couldn't find anything wrong with him. Evan continued to have seizures from time to time and his pediatrician recommended medication to prevent them. We were told Evan had an idiopathic seizure disorder. In layman's terms that means they don't know why it happens.
Evan was developmentally delayed. He was slow to crawl, walk, talk, and become toilet trained. Well meaning relatives had a lot of suggestions to Judy and me on how we might help his speed up his progress. Evan looked normal, a handsome blue eyed blond; "Are you reading to him?" they would ask. "Don't baby him" they would chide. What they saw as encouragement came across as a helpful heaping of guilt.
When Evan was three year old toddler he was diagnosed as being mentally retarded with some autistic tendencies. The state of Maryland provided early education for handicapped children and at this early age transported him by a special school bus to Perryville Elementary School and back through the week. This gave Judy some much needed respite because Bethany had been born at the "pig farm" on my birthday in 1980. It wasn't until Evan was 19 years old that some psychologist in the school system reversed the diagnoses to his being predominately autistic with mental retardardation. We never knew if the proper label of his condition in the early years of his development would have made a difference in his life or not. It's not important in the here and now.
Trying to establish the right seizure medicine with the least amount of side effects for a growing child was a challenge. It seemed like all the different pills had the same downside: liver damage. Several times a year we would make a trip on the route 1 bypass to Jennersville Hospital in Pennsylvania to have Evan's blood levels checked to monitor possible liver damage. Coming home on one occasion from the hospital after a particularly bad lab episode resulted in an uncooperative son and a very embarrassed father; I decided to have a pity party. I was almost certain that Evan was never going to have a normal life – he would never marry or have children of his own. I had hoped to have a son I could teach to play sports. I was already turning Melodie into Mel and a tomboy at that. Looking over at him, I uttered a silent prayer, "Surely You could heal him, I'm believing on Your Word".
And then an amazing thing happened. Out of nowhere words came into my head as if God were speaking to me with a melody and words to a song. By the time I reached the house some 15 minutes later, I had all the lyrics in my head. Judy was waiting supper for me but like a dream when you first wake up, I was afraid if I didn't write everything down in my head right away I would forget it. As quick as I could write, it was done. Here are the lyrics to the song:
Traveling down the bypass, looking at my son;
Wondering what the future holds for this retarded one.
Looking for the reason, questioning my Lord,
"Surely You could heal him, I'm believing on Your Word."
Chorus
"Have you walked in My shoes? Can you read My mind?
I'll give you all the answers at the end of time.
But as for now, just trust in M"
He said "My grace is sufficient for the".
What a revelation! Could there be a plan?
Can't I trust the Lord enough to leave it in God's hand?
When I doubt His wisdom and offer my advice,
I think of what He spoke to me and trust in Jesus Christ.
Chorus
So if your prayers aren't answered in weeks or months or years,
Know there is a reason although it seems unclear.
Cause if God cares for sparrows; takes time to number hairs,
And if He dresses lilies don't you think He answers prayer?
Chorus
The melody to the song was never put to paper but remains in my head, thirty years later. I shared the song at a men's retreat once and the story and song at a couple church services years ago but am reluctant to talk about it much today because I don't want people to look at me funny. I haven't been inspired to write any other songs, but do enjoy writing poetry and an occasional limerick.
Ironically, after Bethany was born, Judy and I would have four additional sons born to us: Rory, Tyler, Austin, and Lucas. My fears of the family linage ending with me were no longer a concern.
Living with a child with disabilities can be exacerbating at times. After many years, we finally got a handle on his seizures, with medication. The most difficult aspects of Evan's autism involve temper tantrums, understanding single syllable and some sign language skills, and his need for us to repeat the same phrases over and over again. Through a combination of verbal utterances and his own brand of sign language, he gets great pleasure from getting us to say the phrase he wants to hear. Ron, a co-worker, borrowed my truck twenty years ago and Evan thought it was hilarious; as if he pulled one over on me. "Ron drives Dad's truck" has been one of his favorite lines. Seemingly innocuous, try saying it 20 times a day for 20 years along with some other nonsensical gems. He wants to communicate but repeats like a broken record. The rest of Evan's day at home is spent watching videos in his room of Muppets, Sesame Street and Barney sing- a- longs. He bounces in his chair while keeping the beat with his feet. We average about two rocker/recliners a year after the springs give out in the seat. Unfortunately, Evan likes to stay at home too much. A van picks him up through the week to take him to the Center. This facility provides some training and for us respite for physically and mentally impaired adults of all ages. At the present time Evan hates going to the Center and can be very disruptive now and again while he's there. He doesn't enjoy visiting relatives nearby like he used to and summer vacations are hard for him to adjust to the unfamiliar surroundings.
Evan is six foot two inches tall and weighs about 210 lbs. We are grateful that he showers without our help and can dress himself, although he is known to layer his clothing above the waist. Layering includes two t-shirts, a sports jersey, and usually two sweaters or sweat shirts. In the summer, we hide his sweaters and winter clothing and force him to wear some seasonal garb.
If you don't know this by now, let me warn you – never pray for patience. God has a habit of granting wishes on his terms and timetable with the big picture in mind. In this case not only would I get experience practicing patience over the years but in the developing story of our lives, older sister Melodie, would be influenced by Evan to take sign language in high school. Furthermore, my tomboy used her signing and singing skills for her commencement exercises at Shepherd University, in West Virginia and in competing for Miss Maryland in the Miss America Pageant. After graduation, she spent 2 ½ years working in Puerto Rico as a missionary working at a deaf school and is currently trying to obtain her national certification in deaf sign language. Evan hasn't had as profound an impact on our other children as he had on Mel, but in many ways they are better people for the life experience. If anything happened to Judy and me, any one of them would take Evan into their home to live out his years.
Tom