As positive as the last couple of weeks have been, I want to make sure that I keep myself grounded in reality, and all of you as well. There is no “miracle” happening here, Ella is not awake because she has been blessed. Alycia and I had a meeting with the doctors and the rehabilitation team on Thursday, and they made us aware that Ella will have severe limitations the rest of her life. She will be a special needs child from this day forward and will not make a full recovery. So if this is a “miracle” that she is out of the coma, wouldn’t it then be a curse that she is now going to have severe disabilities the rest of her life?
Her brain was healing and that is why she was in the coma, this is a fact. She had her skull cut open, had a giant tumor removed from it, and then had severe swelling in her brain that lasted a week. This would put anyone in a coma, it is the body’s way of dealing with that severe trauma. How long she’d be in the coma or if she’d ever come out of it, were all unknowns, no one including every doctor that saw Ella, could predict what would happen to her.
Ella can’t talk like you and I can talk, she doesn’t have control over her tongue and the right side of her face is paralyzed. Her lips don’t move fluidly and her speech is extremely slurred. She has both long term and short term memory issues; she didn’t even remember Alycia being here earlier today or yesterday.
So while all of you are celebrating, as I am too, being that Ella awoke from an almost three month coma, she is far from ok.
I’m not trying to be negative, I’m only stating facts, telling the truth, updating you all of the reality. I could choose to only focus on the progress she has made, and not the whole reality, but that would be denial. The reality is that my daughter is alive, but she is a different girl, she will be disabled for the rest of her life and what sort of life awaits her? Will she be be unable to feed herself or bathe herself? What happens when Alyica and I die, who will take care of our daughter then? You see, all of these new concerns and the fact that Ella doesn’t even remember what happened 5 minutes ago, are still causing us tremendous amounts of stress and suffering.
So if it’s prayers and miracles that are to credit for my daughter waking from her coma, do these prayers and miracles have limitations? Why haven’t they completely cured her? Should we not have done radiation treatment with Ella and instead just prayed for the last remaining cancer cells to “miraculously” explode out of her head?
Dr.Pang and Dr. Zovickian saved my daughter’s life. Dr. Mueller and Dr. Hass-Hogan are using machines and 100 years of radiation science invented by Marie Curie (who sacrificed her own life for science), to destroy those last cells. And Ella gets all the credit for waking up on her own, it was her body that healed itself, not prayers and miracles. None of you will be here with my daughter to care for her the rest of her life, you’ll forget about her after awhile, now that you can rub your bibles and arrogantly take credit for her waking from her coma. Even though it was science, skilled surgeons and Ella’s body, that did all the work.
It takes no effort to say a prayer, it helps Ella not in the slightest. And yet I receive comment after comment stating that it was “an answered prayer” that Ella woke up and “simply a miracle of god” that she is alive. It’s offensive to me to read these arrogant comments, and it doesn’t help me deal with the reality that Ella will have disabilities. Remember, the burden of proof is on you who believe, not me. It’s not my lack of faith, it’s your lack of evidence, and whereas a donation or heartfelt note actually makes a tangible difference in all of our daily struggles with Ella’s illness, a prayer does nothing. At least you can’t prove it does anything.
Jesus was a character in a story, that truly cared for the sick and the needy, and he did a lot more than just pray for them, he fed them and clothed them. I’d love to believe that he was real, and that his followers live their lives just as he did in the story. But alas his followers completely miss the morals of those stories and instead do as little as possible to help their fellow humans in need.
Please stop leaving comments on this blog about prayers being answered and miracles happening. If you really care, donate some money to Ella, seeing as how she will need special care for the rest of her life, care that the state won’t pay for. Or if you can’t donate money-and in these economic times, we totally understand-but still want to make a positive impact on Ella’s life, send her a card with a personal message of hope, from you. Don’t quote bible scripture or mention god, just say something thoughtful and sincere, from your heart. She will read these cards and notes in the future, or have them read to her, and these kind words will do so much more for her than a silent prayer you said to yourself.
Remember, what happened to Ella could happen to your child, grandchild, niece or nephew, brother or sister. And if it does, what would you rather have, the most modern science and medicine, the most skilled surgeons and doctors or just some prayers? See my point?
Anonymous (who is actually dougkman@juno.com, I don’t know why he didn’t just post his name but did his email), allow me to explain myself further, so you can completely understand where I am coming from. I’m sure in your eyes, I was born evil, raised by Satan worshipers, and eat my fair share on new-born babies each month, right before the Wednesday night sacrifices. Actually, I was born in Santa Rosa, raised by a single mother and her parents, mostly my grandmother Arlene, and went to the Mormon church in Sebastopol until age 13. At age 13 I started asking questions, questions that were not answered by the bishop of the church, or the missionaries, or anyone else that went to that church. These questions I was asking were only later in my life answered, by science. At age 17 I decided that I would spend some time researching religion, it’s origins, evidence to it’s claims of supernatural events, and study keenly the people who act as the spokespeople for god, here on earth (the pope, the priests, the bishops, the nuns, etc.).
What I discovered is that religion is a construct of man, used to keep populations in order, or fearful, so that the rich and powerful can stay rich and powerful. There is not one shred of evidence for the existence of god, or allah, or buddah, or shiva or thor or zeus or jesus. And I don’t follow things that haven’t been proven.
So you are upset because I don’t want you proselytizing on my daughter’s blog, or crediting the supernatural with saving my daughter, where a natural explanation is all too evident and real. Well I’m sorry Doug, you should respect my beliefs and if you truly are a christian, then you should forgive me. Or are you the kind of christian who gets to judge people, even though your bible says you aren’t supposed to? If I wanted to take advantage of my daughter’s illness for personal gain, I certainly wouldn’t do it by letting the 85% of the readers of this blog, who believe in the man in the sky, that I am an Atheist. But see I have principles, my beliefs are so grounded in truth, that I could never commit an act of fraud like that because it would undermine the foundation of all I believe. So instead there are people who will read that we are a secular family, that Ella will be raised with no religious oppression in her life (not by me anyway) and they will choose not to help our family, based on my beliefs.
That is not only totally unchristian and is the very definition of hypocrisy, but it only serves to reinforce my belief that religious people live in a fantasy world where things like truth, facts, honesty, and real compassion, can have their definitions manipulated to serve their own very selfish needs.
The burden of proof Doug, is on you, not me. You claim there is a god who put the nurses and surgeons in that hospital to save my daughters life and that prayers and miracles, not my daughters body healing and biological chemistry, are actually to credit…Then, prove it. I’m not angry, I’m just not going to stay silent, that’s how all Atheists should be, as we have all the facts and proof on our side. We should be vocal and always ready and able to debate those facts, when faced with claims of supernatural acts. I’ve read your bible, but have you ever read Richard Dawkins, Christopher Hitchens, Sam Harris, Charles Darwin? I doubt it. Anyway, you already disrespected me by leaving your message of god and prayers, when I clearly stated that I did not want to see those messages, so obviously you are just an asshole who will do what he wants, regardless of how it affects people.
Respect should be the basis of our civilization, unfortunately people like Doug screw that up, so instead we live in a chaotic world, with war and murder and child abuse, theft and slavery. Thanks Doug.
Amen Summer.
I too, have no intentions of offended you. If anything, because I AM a Mother, and truly understand your “feelings,” as a Father, all I WANT is for Ella to be able to go home and be with you again. I want for her outcome to be that she is able to say, “I Love You, Daddy!” which has already happened.
Please give yourself a break, and Ella as well. Recovery from any kind of surgery always has it’s time limit. And worrying about the future, when one cannot “see” the future, is not going to do you or her any justice.
In our program, we remind ourselves daily the serenity to except the things we cannot change, the courage to change the things we can, and the wisdom to know the difference, one day at a time.
From day one, the doctors and nurse staff who have been involved in Ella’s surgery and recovery are certainly living proof that they were put here to be Ella’s saviors. They are truly gifted, and I am ever so grateful that they have all been there for you.
Hang in there Glen, and remember, One Day At A Time.
Peace Be With You,
Sara
As I read your post, while glad Ella is making progress, I couldn’t help but feel sad. Sad that you cannot allow those of us with faith in God to believe He is working in this situation. God never promised us our lives would be easy, just that he would give us the strenghth to get through it. You are right, the doctors and nurses all have a part in Ella’s recovery, but I also believe they are God’s instruments. I’m sorry if this offends you. If you don’t mind, I will continue to pray for your family.
I just want to say I in no way meant to offend you by saying a prayer for Ella and your family. I am a scientist myself and wouldn’t want to take any credit away from Ella, her doctors, and her family. I am not religious by any means, but believing in something greater than myself gives me hope that anything is possible, even when science doesn’t seem to be enough.
All those scientifically proven little cells are racing around in Ella’s little body, cleaning up and repairing. No one knows what will happen once they’ve done their good job.
All those little clean up and repair cells are doing what they do best. yay for the wonders of animal and plant life forms!
There is no doubt that the road ahead of you will be difficult, to say the least. But I believe in love. And I trust that the immense love you have for each other will ease they way.
Nicki
Everyone take an hour out of your day and go watch an amazing debate between Christopher Hitchens and Tony Blair, on whether religion is a force for good in the world or not. Hitchens is battling terminal cancer, yet his passion for truth is evident in the strength in which he argues in this debate. We need more open debate between the secular world and the religious. I mean we all share the same world, so talking with one another about our beliefs should be strongly encouraged.
We can avoid offending one another if we understood more about each other. I can prove science saved Ella’s life, I have the operating room report post surgery. Can any of you prove that your prayers did anything for Ella? There is a giant scar on the back of Ella’s head to prove that her skull was opened. Proof is everything, faith is fiction.
http://www.youtube.com/watch?v=4JDCHPF8m7g&feature=related
As a person on the outside, looking in, I cannot imagine the pain, anger and array of emotions that go along with having a long-term hospitalized child. My heart aches….
But I wish to thank all of you who have sent your thoughts, support and love to Ella and her family during these difficult times. You are WONDERFUL people…!! Thank you, always, for being there for them….
Lin
Hi There-
I’m downstairs in Long 6 with my daughter Grace (from Aveah Malesa’s class). She just had surgery on Thursday and is recovering now. W’ell be here for a week or so. I know that what we go through with our daughter does not compare to the nightmare you have been living for the last several months, but I just wanted to let you know that there are some Sonoma County locals downstairs going through the weird, altered hospital living reality too. Unfortunately, the “hospital life” is more familiar than we would wish it to be.
Anyway, our thoughts are with you. You guys have stayed amazingly strong for your little girl!
Kelly