Deborah Carney

Where I Celebrate Life

Response to Julianna’s Parents

Dan-computer-1999The story of Julianna – the child that has been talked into choosing death over life due to having a disability is so wrong on so many levels. I am devastated that this type of attitude STILL exists.

My children choose life over anything. It is what they were taught and how they were raised. They had Spinal Muscular Atrophy and “should” have never reached adulthood. I have stories of hundreds of similar children that should never reached adulthood or lived good lives.

But they did reach adulthood. The did live good lives. My son Dan died in a CAR ACCIDENT – he did not die from SMA.

The idea that a CHILD should be able to choose whether to live or die is so wrong. That child only knows what it’s parents have told it. This child has no clue about what being dead means. Instead she should be celebrating life and be grateful for every day and her PARENTS should be celebrating her life with her as well and supporting her through the pain.

Who – who – who has a perfect life? A life without challenges, a life without health issues. Look around you – who has not dealt with some kind of serious health issue? Who was able to live a life after a devastating diagnosis?

This is not about “right to life” or “right to die” – it is about living your life. At what point do we decide to not allow children with disabilities to continue to live? Are we back in the dark ages? Are we in the cultures that kill girl babies because they are not acceptable to have as children? Are we in a culture that decides who will have quality of life and who won’t?

I was going to stay away from this issue because it HURTS so much that our society still cannot accept that no life is perfect and that those that are different must be removed from our lives.

Yes I support the Right to Die movement – with a LOT of caveats. A FIVE YEAR OLD cannot make the decision to live or die. A five year old with the possibility of a full life that just has some challenges. Her parents said it was selfish to keep her alive – I say it is way more selfish to allow her to decide to die. In their minds they have already buried her. I feel sorry for them and for her. Because her life appears to be full of “poor thing” “she is in pain, we must end this” “if she gets sick again she will die”. LET HER LIVE – help her live. Give her happiness, sing to her, color with her, play with her. Bring her light and happiness. Let her be a child and let her grow.

If she gets really, really sick and cannot be treated and cannot live, at that time let her go. Don’t let her go before you even try to give her a life.

I know of what I speak. I am not a bleeding heart or religious zealot. I lived the life with my children. We lived with positive energy among people that said they needed to be “put in a home”. There are people in our family that gave up on the boys at the time of diagnosis. They outlived their anticipated lifespans. They had surgeries and struggled. They lost other family members to cancer. They had lives. They had challenges. They didn’t want to die.

They choose to live regardless of the difficulties.

Attitude is everything. Julianna’s parents – I beg you to stop treating your daughter like she is dead already. I beg you to not treat her like a family pet that should be put down. I beg you to treat her like a child and love every minute with her – the challenges, the problems, the smiles and kisses. Stop telling her that heaven is better than earth. She needs to be able to understand that she can be a happy person with a life to live. Her parents need to understand that she is a child with a purpose and a life to live. To not treat her illness the next time she is sick because she *might* sink into a vegetative state is playing God. You don’t have that right. In this case I hope that an agency steps in and takes her from you since you don’t want her anyway. She is a burden you don’t want to deal with.

My words sound harsh? They are meant to be. Our society cannot accept this action. Parents cannot have this power over handicapped/disabled children. This is a slippery slope that we cannot add grease to. Will the next family choose to let their child die without treatment for illness because they feel that at some point they will die young anyway?

Shock – be in shock. Do not be complacent. Do not say – it is the right of the parents. Be outraged, be indignant, make it known that this is unacceptable behavior. It is child abuse. It is child neglect. It is wrong. We need to stand up and say THIS IS WRONG.

Not “How to” But “How Did I” Transcript

Not a “How to” But a “How Did I”….
Technology Gave My Children Better Lives
Chapter 1

I’m sitting here on a day that is a sad day for me every year. Nine years ago today, on Mother’s Day, May 13th, 2002, my youngest son was killed in a car crash. Every year on May 13th, I usually try to do something special that commemorates his life or helps other people. Today, what I decided to do is talk about how I got started on the Internet. Normally, I don’t do single podcasts by myself, so I hope this ends up being an okay podcast.

I think it’s important for a lot of moms and dads to hear my story so that they can understand that their story, even though it’s maybe in a different time and place, we all have some very similar experiences. I want to talk a little bit about it’s a bit of a history lesson in how the Internet has changed how we deal with certain things in our lives.

It all ties in with my starting a blog, DeborahCarney.com, which has taken me a long time to get to simply because it’s hard to talk about and write about certain things when you’ve had a lot of pain in your life. Again, I want people to understand, in my case, how technology has made a huge difference in a lot of aspects of my life.

To go back to the beginning, I married young, 19 years old, had a daughter in February of ’77, and had my son, Chris, in July of 1978. He got really, really sick when he was seven weeks old and had to be hospitalized. They thought that he had meningitis. It made him it very weak. It acted as a temporary paralysis. They thought that that disease paralyzed him. He started on his path of recovery. In the meantime, life went on. He got to be about nine months old and he seemed to be getting stronger, and then all of a sudden, he stopped. He could pull himself up to kneeling, but he could never stand.

We started to take him in for some testing and getting some evaluations done. Now they said it was ECHO encephalitis. It acted like a paralysis, like a polio type thing. The thing that got to them was that even though he couldn’t stand, and it seemed that he was very, very weak, he could still wiggle his feet. I can’t tell you how hilarious it was to be sitting in a hospital room at a teaching hospital and having neuromuscular specialists and neurologists come in the room with groups of students and go, “Look, no weight bearing, can’t use his lower extremities, but look, he can wiggle his feet.”
[Read more…] about Not “How to” But “How Did I” Transcript

How Did I Get Started on the Internet?

May 13th is a special date to me. It’s the day I got engaged (1976), it’s the day I got divorced (1990), it’s the day my youngest son died (2002). Each year on May 13th I try to do something he would be proud of. He was a big supporter of my photography skills and my writing ability (although he was the one with all the writing talent 🙂 ) so every year for the past several years I would go somewhere and photograph something. Some years while I was in Rochester it was the lilacs at Highland Park and other years it was Red Rock Canyon, and still others NYC parks. This year I had a bad fall this week and can’t hold a camera or go for a walk. So I challenged myself to do something I don’t normally do. I recorded a solo podcast. It is meant to be an inspiration to other parents of children with disabilities and a peek into life before the World Wide Web, when the internet was just green letters on a black screen, but that still allowed you to do research you would ordinarily take months to do.

I kept it to 20 minutes and didn’t say all that I had to say, but will add more later. For this special edition I just wanted to tell part of the tale, the part that will hopefully inspire other parents to reach out, start a blog, use online resources to make their lives and their children’s lives the best they can be.

Podcast: Play in new window | Download

How the Internet – Not Yet the WWW – Helped Me Find Info on My Sons’ Disease

When my sons were diagnosed with Spinal Muscular Atrophy back in 1981 I had to pull the name of the disease out of the doctor over the phone. Chris was born in 1978 and was very sick when he was 7 weeks old which left him very weak. He regained his strength to a point and at about 8 months old he stopped again. In the meantime I got pregnant for his brother, we dealt with Chris like he was paralyzed, the drs couldn’t explain what was wrong. He started getting physical therapy. Danny was born, developed normally, no illnesses and at 8 months old stopped developing strength in his legs. Time for tests. They ran tests on both boys and we saw a neuromuscular specialist. That is the dr that I got on the phone to try and get the test results. We had been playing phone tag for a week and I was frustrated. He wanted to talk to both me and their dad at the same time, and I said no, just tell me what they have. Longer story short… he told me. (I later found out that when he explained the condition to another mother in his office one day that she physically attacked him. I understand that, but I was on the phone and wasn’t about to drive across the city to go punch him.)

I got off the phone with him an hour before a nearby library was closing so I headed out quickly and went through the card catalog (remember those?) The librarian wanted to help, she stayed open a little late while I did basic research. She found reference in a book and she gasped before she showed it to me. It said most children with the disease died before reaching age 1. I reassured her that one of my children was already 3. She sighed and found some more stuff, we copied it and she said I should search medical journals. I had access to a local University and started searching there.

Since I was computer literate, I did also did a library search online. At the time there was no World Wide Web, the internet was a black screen with green letters on it. I had found a medical library online that was very expensive to use during the day, but was much less expensive in the off hours. I printed out pages of results and called the main library that could then find the articles that were referenced and copy the pages of the physical journals. The online information was just abstracts, full text was like $300 an hour. The service I was using was KnowledgeBase and it was $20 an hour if I remember correctly.

By the next doctor’s appointment (this was a noted specialist in neuromuscular disease) I had copies of research that even he hadn’t seen. Flabergasted, he asked where I got this information and then asked if he could copy my research, and I handed him over 100 pages of medical journal articles and printouts of more abstracts. I still have a yellowed manila envelope of all those copies.

I never treated my sons like they were going to die, or pampered them. We took what we learned, we worked with an angel of a physical therapist, and we gave them the best life we could, because we didn’t just take the diagnosis and listen to the doctors and therapists and other parents – the ones that just blindly follow the “this is all we can do” philosophy. My sons never walked unaided, were never able to bear weight, but they were healthier than their peers because we did things out of the norm.

Danny didn’t die from his disease, he died in a car accident. Chris outlived most of his peers and had (a phrase I actually intensely dislike, but it’s all we have to describe it) – he had a great quality of life.