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March 23, 2005

Two Readers Who Identify with Terri and Want to Help

Topics: Testimonials

Jodi's daughter is fed through a tube.

I am 39 yrs old and have a daughter, almost 10 yrs old, who was severely brain damaged at birth. This case with Terri is very close to my heart because of my daughter and knowing first hand about these situations. Kristin has relied on tube feedings her whole life.

She does live in a skilled nursing facility because of her 24/7 care needs, but we go see her regularly and I do all her laundry. I cannot imagine what Terri's family is going thru. To see your child starve to death and not be able to intervene. Just want to say I have written many letters to the President and Senators and Representatives and cried out to God in prayer many times. I will continue to pray, pray. pray. She is in God's hands and He will take care of her whether here or in heaven. Let me know if there is more I can do.
Alicia was in a coma but is now in college:
I'm 19 and a freshman in college. I'm in a wheelchair, I was in the hospital; I was in a coma, then in 'locked in' syndrome.. for a while i was only able to move 2 fingers, but now I can do almost anything.. my parents were told i should be placed in a convalescent home, but i was put in a rehab hospital instead, and that helped quite a lot. Plus, they established a way of communicating with me, through blinking. I had a trach and was unable to speak for about 6 months. I have a lot of pictures, if needed. I too am currently being kept alive by a g-tube. I was way worse off, as are a lot of people i know now.. if need be, I'll go down to Florida and help in any way I can, just contact me. -Alicia

(Thank you to those who have added to this in comments!)

Posted by tim at March 23, 2005 12:30 PM

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If someone could interview Alicia, or if Alicia could get to Florida (it's spring break right now, I think???), that would be wonderful. Bless you both, Jody and Alicia!

Posted by: Mary in LA at March 23, 2005 12:48 PM

My daughter too relies on a feeding tube. We could feed her by mouth, but it takes such a long time and we usually can only provide 25% of her needs that way. She has profound mental retardation and severe cerebral palsy from hypoxic encephalopathy caused by an enterovirus she acquired as an infant. She will never walk or talk. She has no trunk support and hence cannot sit on her own. She has regular seizures and is unable to sleep through the night. Still, despite all of this, she is very much "alive". No person has the right to deprive her of the life God gave to her. When she was ill, her heart did stop. But it was God that decided to let her live again. Denying nutrition and hydration not only violates the commandment not to kill, but it violates the first commandment because the sinner elevates himself as smarter than God in deciding who should live and who should die.

Posted by: John C. Walker at March 23, 2005 12:58 PM

I have a disabled daughter. At 4 months of age, a highly respected UCLA neurologist told us based on her MRI's and his physical inspection of her that our daughter's cerebral cortex area of her brain was hugely gone. He went on to further say that we should just try to make her as comfortable as possible, and not to invest in any therapies as they would not help. As you could imagine, this news devasted my husband and I....it did not however deter us.

While Amy (now 4) still cannot swallow her own saliva (and Terri can), through a long process we taught her to eat everything by mouth. Due to intense physical therapy and other alternative treatments, Amy is taking assisted steps and beginning to sit. We did not give up on her.

I have looked at Terri Schiavo's videos, I have spoken via e-mail with Mr. Schindler, and I am 100% positive that Terri is no different than my daughter. Even with the many years that Terri has been left with no therapy and stimulation, there is still hope. Will she ever have full capacity, the answer is no. But I have seen the eyes of my little girl daily for 4 years and I have seen the eyes of Terri. Terri is not brain dead she is alive.

Posted by: denise at March 23, 2005 1:00 PM

CS Lewis: "There are no ordinary people. You have never talked to a mere mortal. Nations, cultures, arts, civilizations -- these are mortal, and their life is to ours as the life of a gnat. But it is immortals whom we joke with, work with, marry, snub, and exploit --immortal horrors or everlasting splendors."

Posted by: rightallthetime at March 23, 2005 1:05 PM

To all who have children or loved ones with these same needs as Terri, please:

email Governor Bush (jeb.bush@myflorida.com) or call him (I don't have the number -- someone?)

and President Bush (president@whitehouse.gov)Comments: 202-456-1111
Switchboard: 202-456-1414) and let them know you would never allow this to happen to them, so why are we allowing an estranged husband to do this to his disabled wife?

God bless you all! Terri, we love you!

Posted by: Sirena at March 23, 2005 1:24 PM

This is a letter I posted on one of the News websites. I think it was on MSNNEWS or CNN. They were asking the public to respond to a couple questions, so I did.

I would NOT kill my loved one. Terri is so much ALIVE. Have you ever ONCE asked yourself WHY Michael wants Terri dead so bad? What really happened that night in 1990? Why did he, once he got the money, why did he send her away and refuse treatment for her that could have helped her recover? While Terri lay in a bed day after day, night after night, year after year, he was with another woman. Living with another woman and having children by her while Terry stayed locked up in a far away room in some hospice. Is that his love for her? He’s NOT the one who has been taken care of her all these years the nurses have. Terri is alive and if you and the viewers can see her for who she really is and not just see her disability then you to can see how very much alive this young lady really is. I can see how Terri smiles at her mother and how her eyes light up whenever her family is with her. She knows she is loved by them.

Now let me tell you a little about my son. He was a miracle baby weighing only 2 lbs and 1oz at birth. At age three (3) we were told that he had Cerebral Palsy. He couldn’t walk, he dependent on us, his parents, who loves him very much. Just because he had to use a wheelchair and eat by a feeding tube didn’t make him any less of a person then you or I. He could still express his emotions, feelings and his likes and dislikes. Having a disability doesn’t mean you shouldn’t have a chance at life, Right? Do we really know what Terri wants? How is she to let us know if she isn’t given that chance to let us know? Can you please tell me that? Why is it that some people believe the word of one man? When we really don’t even know what happened to Terri that night years ago that caused her to have this disability.

My son, he was 4 years old when he had his GT (feeding tube) placed in his stomach. He could not eat by mouth because he aspirated food back into his lungs causing him to have pneumonia a lot. But like Terri, he could love, he could smile, he could cry, he could laugh, he could let us know his wants and dislikes even though he couldn’t talk like you or like myself, but he could feel pain and he understand and was aware of his surroundings. My son lived 15 years, most of his life, with a feeding tube but that did not make him inhuman. He passed away at age nineteen (19). My son was a gift from God. He was our angel.

Your question is: Have you had to make medical decisions on behalf of a family member? If so, what were the circumstances, what did I decide and why?

Yes, we have had to make medical decisions on behalf of our son, on several occasions. The first circumstance was at the birth of my son. We were asked, “Do you want us to try and save him?” As shocked as we were with that question my husband said, “hell yeah”. We know if it wasn’t God’s will our son would not have made it that morning nor would he have lived for 19 years. God gives us life and it’s up to God when we should die. NOT our husbands, mothers, or fathers for that matter. Terri is not on a breathing machine for God sake she is breathing on her own! Maybe if the MEDIA will show Terri interacting with her loved ones and be around her for a period of time maybe then you, the media, would see that and share that with the public just like you all keep sharing how much Michael so call loves his wife. He loves her so much that he has already started a new family.

I have a question for you. You eat everyday, right? Does that mean that you are also on life support? I think NOT! Terri is NOT on life support. She needs food and water to live, to survive, just like you and I.

The bottom line is they are starving this young lady to death while people sit back and do nothing. She hasn’t done anything wrong. But yet a man who kills our children gets three meals a day and gets a due process hearing. A dog has more rights then a human in the USA! Now you tell me is that fair? NO! It’s insane.

One more question. Why is it that you, the media, portray Terri’s family as the bad guys? But yet you seem to favor Michael’s side to KILL his wife? Terri’s family is only asking for a chance to keep their daughter alive. They know that their daughter does NOT want to die?

Posted by: Tina at March 23, 2005 1:32 PM

Tina - Bravo! And I'm sorry about the loss of your son. *hug* God bless you and your family for your efforts in trying to save Terri.

Posted by: Sirena at March 23, 2005 1:48 PM

Jeb's number: 850 / 488-4441. I'm off to call.

Posted by: Mary in LA at March 23, 2005 2:14 PM