Thursday, January 1, 2009

John.

Thank you, for your kindness, compassion and understanding. I think I should explain a bit about John.
Born in 1986, he came to us a small, rather purple little boy. The trauma of birth had bruised his little face and he weighed 6lbs. 9oz. A bit of a surprise as his brother bounced in at 9lbs 11 1/2 oz four years before!
We stayed in the hospital for one day and went home the next, never really suspecting that there were problems. For the most part, he displayed himself as a bright baby boy.
About the time he was a month old, I started noticing differences between when Nathan was a baby and John. I would sing to him and talk to him and he would respond, only a bit slowly. Never vocally, but he would follow with his eyes. Those beautiful, gray eyes.
A whisper one day set the wheels in motion to discover what the problem was. "This child is deaf." came loudly, as though someone were standing beside me. No one was there. But, the next day we made a trip to see our doctor and from there we encountered specialists who would give us the reason things were different- John was deaf. Profoundly, in fact. Hence the communicating with our hands. To compound matters, he was also diagnosed with mild cerebral palsy (left-side hemipareses) and a seizure condition. Later on we would find that he is also mild-moderately mentally impaired. Quite a lot of things to encumber a small boy, wouldn't you agree?
None of this has ever made a difference to us. He was still John, still had abilities and still our son. My husband and I have done our best to make sure that he has had the same opportunities as his brother (and then his sister) have had. He has responsibilities, chores, he is accountable for his actions and he knows it. He is also my funniest child, with a sense of humor that makes anyone feel instantly better. Every time.
He began crawling at a year old, rolling around the floor before that to get where he wanted to go. He walked at three years old. He began school at three and a half, starting in preschool at the Atlanta Area School for the Deaf and remaining there until 2007, when he graduated at 21. That's a long time to be in one place. I have always said he thought he was the King of the school. He probably was.
One of the complications of CP, in John's case, is that his emotions tend to be exacerbated. When he thinks something is funny, it is really funny. When something is sad, it is likewise, really sad. And when something makes him angry, well, the same applies. Sometimes his anger has been spurred on due to medications for his seizures. Other times it is because of external stimulus- like wrestling or a television show, or nothing but a bad mood. None of those actually make it right for him to act in such a way, but the understanding is there as to the why he does. Part of the reason I shared yesterday's event was because I felt that it might possible help someone else in the same situation. You never know when someone is suffering due to the disability of a child, brother or sister.
It is not always like that at my house. Usually we have peaceful days where there are no incidents other than maybe the cat had babies or the chickens escaped. But for those that live with uncertainty every day, you are not alone. On occasion, John's brain overloads with too much stimulation and then he lashes out. It is something I have come to learn to deal with, but wish I didn't have to. When it is over, it is over. Sometimes he remembers and sometimes he does not. However, he is always sorry and quick to give a hug and an apology.
There will be a time when all of these things will go away. When he has returned to his Heavenly Father and is restored to a perfect, Celestial body. We are a family, sealed for time and all eternity and when we are all back together, we will hear his voice for the first time. He will tell us what it was like to live in his earthly body and what he was thinking when he stuck an entire box of mini pads with wings on his bedroom window, why he laughed a deep, belly laugh at his brother on his first Halloween, why he loves wrestling so much and why he left Santa a note asking for a girl friend for Christmas in his stocking this year.
Until then, we wait, we deal, we live, we laugh and we love. That's what families do.

Happy New Year, everyone. I hope your 2009 is a blissful, joyful year.

6 comments:

monix said...

I guessed that John was deaf with extras. I was a Teacher of the Deaf for nearly 40 years and was privileged to share in the experiences of families like yours. Sadly, not all of the children I worked with had such good, loving families. You provide John with the very best kind of life and it is generous of you to share your experience and wisdom with others who might need it.
Maureen

Beemoosie said...

Your family is blessed and you are a wonderful mom...I can tell from your words. Your story is a perfect reminder to treat others gently b/c we do not know what is behind there actions.

Utah Grammie said...

You are amazing. Truly. Totally. Amazing.
Love,
Colleen

Aunt Jenny said...

John is so blessed to have you for a mother! I know a little of how you feel and I am so inspired by you! My youngest has some disabilities...not the same as John's but I do worry. He has deep emotions too and we all have to really be careful what we say.
The mini pads on the window just cracked me up...totally something my Dalton would do and not have any reason for. Hang in there..you are awesome!!

whimseycreations said...

Mini-pads on the window? Angel wings of course - showing you what he is deep down inside. You are a good mom and have such a wonderful way with words. Happy New Year Karin! Jill

Betty said...

Thank you so much for sharing your story about John. He is so very fortunate to have you and your family with him. God bless!