Do not read without kleenex

Mom of one · #1 Mar 31, '05, 9:24 pm

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.

Mom of one · #2 Mar 31, '05, 9:26 pm

Shelby communicates in her own way; when there is a new nurse (most of her nurses have been here for years) I tell them that even though they know how to use her equipment, they just need time to learn Shelby. They need to learn to read her moods, her signs of being uncomfortable. Shelby definitely responds to pain (ask the person who draws her blood). She responds to the noises of the house, the dogs barking, the kids running around and most of all, to my voice, to my touch.

And I'll let you in on a little secret that my family doesn't know, since everyone thinks I'm a tower of strength. It's a rare occasion that I have to be Shelby's nurse; sometimes I have to do the night shift, which is 11 p.m. to 7 a.m. It's during that shift that if I fall apart, it will be then. The house is quiet; the other 4 kids and hubby are asleep, the dogs are quiet. It's just her and I. I will lay in her bed, snuggling next to her and talk to her just like we used to before her accident. I will tell her it's time to get up, it's been long enough and I will her to get out of that bed. Through my tears, my comfort lies in God, the peace that comes with faith, to release your burdens that are so heavy, and no matter the outcome, you know He's in control. I trust that God and Shelby know why she is still here; she survived her near drowning for a reason. I believe that because she was without a heartbeat for so long that she went to heaven and has seen the face of Jesus. I believe that Shelby came back, even in the condition she is in, for a reason. She has blessed and touched so many people since she was born, and just because she is not the little DS girl she was for 4 years and 4 months, she has touched and blessed more people than she did before.

I miss my daughter teaching me about DS and miss what having a DS child entails. You all may not understand where I'm coming from, but come and hang out at my house for a while. Spend some time with Shelby; you'll know soon enough that she's talking to you, too. And she's a great teacher of the important things of life.

May God bless all of you richly in your lives, as I have been so richly blessed!

Lisa4Catholics · #3 Mar 31, '05, 9:31 pm

You know how insulted and hurt this mom is to hear people on the MSM talk about Terrie like a worthless plant

SusanL · #4 Mar 31, '05, 9:32 pm

You warned me.

harveyc · #5 Mar 31, '05, 9:35 pm

Thank you and God bless you for sharing.

I was immediately reminded of listening to the debate on the final version of the Florida Senate bill last week. The senator (forget his name) that sponsored it shared a recent e-mail he received from a friend. Until receiving the e-mail, he had been totally unaware that his friend had a daughter that was in much worse shape than Terri. The friend's e-mail made comments about how much richer his life was because of his daughter. I remember these words from the e-mail quoted in the Florida Senate:

Quote:

The weak need the strong and the strong need the weak.

It's so obvious, but many just don't understand it. The story you shared helps.

Mom of one · #6 Mar 31, '05, 9:37 pm

OK, now I need the kleenex-again. Just reading the replies.....

Mike_Olson · #7 Mar 31, '05, 9:41 pm

That is a very touching story; thank-you for sharing it. It tells us all that life is precious. It is not a commodity it must not be bought and sold. I am ashamed to admit that before my conversion I thought it would be better to just let someone that impaired go. I don't feel that way any longer. Everyday God gives us is precious; we must not play God and let someone die that we can save; and we must not kill someone by taking away from them life saving measures. God bless you and your daughter. You are a strong person.

antiaphrodite · #8 Mar 31, '05, 9:53 pm

my eyes are pretty dried up...

thanks for sharing. God have mercy on us.

Mom of one · #9 Jun 18, '05, 11:49 pm

Bump. I know some people need to read this.

STIOFÁN · #10 Jun 19, '05, 10:44 am

I read your story, it's hard to watch our loved ones when they suffer.
I used to hang around a Protestant boy when I was younger, Thomas was his name he was born paralized.

I used to push him in his wheel chair to get him about as he could do nothing for himself.

He couldn't move his legs, and his arms wern't much better, he could only get those to swing from the shoulder.

I hate watching children suffer the most, but sometimes they can teach us a lesson about the important things of life, and not get caught up in trivial things.

Little Audery Santo from Worcester Mass; had a simular accident to your daughter, they say she is a victim soul, and she probably is.

Anyway I promise to remember you and Shelby in my prayers, God Bless.
http://members.aol.com/theBVMPage/audrey.htm