Do not read without kleenex

[Mom of one]

As some of you know, I am a nurse. I am a home health nurse. Most of my patients use what the Church considers extraordinary means-a ventilator. My patient's mom sent this to her Down's syndrome support group when Terri's story started to become national news. Then, she sent the e-mail to all of her nurses. But, take heed: DO NOT READ WITHOUT A BOX OR TWO OF KLEENEX.

As most of you know, my 10-yr.-old daughter Shelby had a near drowning accident on
May 15, 1999, when she was just 4. She suffered an anoxic brain injury, lack of oxygen to the brain. I won't ever forget that day; I can still hear my husband's voice screaming to call 911, that he found Shelby floating in the pool. I remember doing CPR, all the people along my fence watching, someone coming in the pool area saying that they would take over. Going into the house, never looking back into the pool area, trying to call my sister in Florida and could not remember her number. Calling for another ambulance because the one outside overheated! Going in the police car down the highway to the hospital and once inside fell to my knees sobbing and sobbing and sobbing. The doctor coming in after a long while, saying he finally got a faint heartbeat, but . .. and telling him I did not care and wanted him to keep working on her. Finally going in to see her, still in the ER, and she was all wrapped up in this blow up like plastic (to get her body temp up). She was without a heartbeat for about an hour and without a heartbeat you are dead.

My sister flew up the next day with her husband. My father, who at that time was ONLY 85 (he'll be 92 this year) was up at camp and I asked someone to go up and get him (it's an hour away). He's very capable of driving himself to Florida all alone, but I was worried about him driving with the news of his darling granddaughter. We kind of, not on purpose, took over the doctors conference room at the end of the Ped floor. There were so many visitors that we took over the tables with all the food that was brought up. There was much laughter, along with many tears in that room. So much love and support. One of the doctors on the floor, who was an intern, told us that he had never witnessed such an outpouring of love on that floor and felt blessed to have witnessed it. (see, even in tragedies there are blessings!) I, personally, did not leave that hospital for 10 days.

Six weeks later Shelby was ready to come home. We needed to be trained on how to take care of her -- the ventilator, feeding tube (gasp!) administer meds, straight cath her (her kidneys were not functioning at that time.) how to suction her trach, etc.

Now here we are six years later; I'm an old pro at taking care of Shelby and am intimidated by nothing pertaining to her care. We have an absolutely wonderful group of nurses who are here every day, all day, seven days a week. Her therapists are here -- PT, OT and teacher -- throughout the week, along with delivery of supplies and oxygen, case managers each month. Everyone who walks in my house walks in with a positive attitude. Why? Because they know my daughter.

Which brings me to why I choose to write this in the first place. Many of you will not agree with me and that's okay. But when you've walked the walk, you can talk the talk. You can assume all you want, but don't underestimate the strong bond a parent has with their child. And faith plays a large part in it, also. I do not and will never agree with them pulling Terri's feeding tube. Just because Terri is not a contributing person of society does not mean that her life is meaningless or without value. Terri feels, Terri responds, Terri makes verbal noises. She is not brain dead, or else her body would not function. And you learn the communication of someone who cannot verbalize. Her parents know her, are in tune to her and are willing to sacrifice their life and time to care for their daughter and they should be allowed to do just that. There are so many issues pertaining to her husband that it amazes me that the courts have sided with him instead of investigating his actions. Terri, like Shelby, survived for a reason. When God is ready to take her, He will. It's His timetable, not ours. And a feeding tube is not the same as being on life support. We all eat every single day, and I'll bet that Terri is healthier than any of us are. All of her organs are functioning. She was not dying; she will now without nutrition, just as we would, too.