Posted on 03/29/2005 10:47:53 AM PST by pwatson
I have tried to stay on the sidelines of this whole Terri Schiavo debate.
I kept having flash backs to 9-12-86 when my Daughter Lora was born. My daughter turning purple from lack of Oxygen as the doctors frantically tried to put tubes down her nose. The head doctor yelling to get that “Father out of the room”. My doctor brother later telling me how guilty he felt because he rushed in and put the life saving tube down Lora’s throat so she could breathe and now I have a life time of burden thanks to him. The Neonatal Intensive Care Doctor sitting me down to say most likely my daughter would not live more than a few months. My March of Dimes Nurse friend sitting me down over coffee to tell me how I had to become the expert on my daughters’ disabilities and not depend on Doctors. How more than likely Lora would have multiple defects. Then 6 months later the Autism diagnosis.
There were times we became so stressed out with the surgeries, hospital care, therapy sessions, work, layoffs, and fights with my Wife. There were times I just wished it would all go away. There were times I would think if only we had known; we could have had an abortion. We were so angry, why me, why us, what did we do wrong, why is God punishing us? Can there even be a God when so many un-just things happen? Our life had been so perfect, so much fun, then Lora came and our life as we knew it, ended forever.
Yes I could see how someone like the Husband of Terri Schiavo, after so many years could give up.
This weekend I was watching the news about Terri Schiavo. Unknown to me Lora, my 18 year old daughter with Autism, was standing behind my easy chair watching intently. She walked around my chair, looked me strait in the eye and asked “Daddy, why are they killing her?” Oh God, I thought, how do I answer this? I have spent so many years teaching Lora that she has a brain that is affected by Autism. That it is not her fault, she was born that way. That we love her and value her and she is who she is. Here I have this disabled child who knows she is disabled and has lots of problems caused by her Autism we are all working so hard to improve. She knows her brain is not working the way “Normal” brains work. How do I explain that they are starving Terri Schiavo to death because she has a damaged brain? People with Autism have a very hard time understanding nuance’s or grey areas. They want the world to be black and white, orderly, in the proper sequence of routine and rules. How do I explain, it is not like Autism. She is not disabled like you; she has no hope, no value. I fumbled something about how Terri’s brain is dead and she really is no longer alive so they have decided to stop feeding her so her body will die. I was anguished; I knew what Lora was thinking: “will they kill me because my brain has Autism?”
I remembered that night after Lora was born on 9-12-86. After holding Lora at the Neonatal Intensive care unit at Presby Hospital and her Mom at the Plano Hospital I got home about Midnight. I went into her room with the fresh pink paint, teddy bear pictures and perfect Jenny Lynn bed. That night when I kneeled down on her bed and made my first ever prayer to God. Me the Agnostic. I asked for Gods help to let Lora live so that one day I could talk with her. I said I would do anything or give anything. That prayer was answered when Lora was 6 years old and she said "Hello Daddy" her first sentence. Unknown to me at the time, this was my first step of a very long journey. A journey of Autism, of forgiveness, of faith and of Grace.
I know what it is like to be Terri Schiavo’s parents. I could never give up; it is my duty, my covenant with my God, my sacred duty to do everything possible to help my Daughter with Autism.
Paul Watson, Past President of ASCC The Autism Society of Collin County http://www.autism-ascc.org/
NEVER GIVE UP!
What an incredible and beautiful article. My only complaint is that you should have put "tearjerker alert" in the title.
May I please use this as a guest editorial in Christian-news-in-maine.com ?
Thank you and the Lord be with and bless you, and love your daughter,
Jake
I don't think Michael Schiavo will ever understand the impact his decision to end Terri's life will affect children with disabilities.
Stay strong for your precious daughter!
Please, feel free to use it as you see fit.
just ... wow! Those who "get it" will see just how on point is your amazing essay; those who don't won't.
Thank you, it will be in the Thursday issue. My hat is off to you and your wife, God has blessed you.
What a beautiful article -- thank you for writing it. I'm expecting our second baby, a girl, on June 8th, and your article is a reminder to everyone that our children are gifts from God, no matter their abilities.
Now if we could only get Judge Greer to explain to your daughter why he's consistantly ruled against people with disabilities when he's made his judgements in favor of Michael Schiavo.
Thank you for sharing your perspective on the strength that it takes to be the parent of a disabled child.
"I don't think Michael Schiavo will ever understand the impact his decision to end Terri's life will affect children with disabilities."...
I don't think he cares.
I can't read your post without responding to your heartfelt witness. Thank you for sharing. I hope you will continue to be sustained and strengthened through your faith in God.
I had to stop and re-read this three times to get through it. The tears kept clouding my eyes. I would also like to submit to an online publication with which I am affiliated. I will email you privately via FReepmail. God Bless you, Lora and your family. You are a beautiful example of victory over tragedy.
[My doctor brother later telling me how guilty he felt because he rushed in and put the life saving tube down Lora’s throat so she could breathe and now I have a life time of burden thanks to him.]
I often wonder how many babies in the same distress are allowed to die while medical personnel rationalize the "burden" being put on the parents.
True fulfillment in life is realized by serving others. I cannot imagine your trials. May God bless you and your wife as you love and care for your precious daughter.
"Honey, because it's the law"
God Bless you sir for coming forward with your story.
Straight from your heart, and into ours. Who are we to judge what God has given, and who but God can give life?
Thank you so very very much for posting this for us. YOU ARE A GREAT GUY!! I just know your wife loves you and is proud of you.
Your daughter is a true gift from GOD.
PING!!
May our God continue to guide your steps. How many you have taught today with this simple article. Thank you.
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