Quality of Life Issues: Life on a Ventilator does not mean a painful or poorer quality of life.

Quality of Life Issues: Choosing Life on a Ventilator, Is it Selfish? Is It Giving Others False-Hope? What do you think?

(First I acknowledge every case is different and the choices are tough- I want to pass no judgment on peoples choices. I do believe , however, people are not always given all the true facts and make decisions without complete knowledge.)

I received this comment on my blog-
The commenter accused Samuel's parents of being selfish and giving others false hope.

Anonymous said...
I simply have to ask. How is this choosing life? My son also had TD. My husband and I chose to do the best, unselfish, and humane thing in the world which was let him go. Why put your son through such a horrible life to satisfy your need to parent? Yes, I completely understand what it is like to have to go through what you went through; however, your giving people false hope. These children have no quality of life and never will even if they survive past the 48 hour mark. They will never smell a rose, play in the leaves, or feel the warm sun on their little faces. They will only ever know a machine breathing for them, the pain of several needle sticks and procedures just to sustain a heart beat. And for what? Answer that for me, what?

November 24, 2009 11:51 PM

Dear anonymous I truly feel for your loss. I can never know what is is like to make those decisions you and my sister-in-law faced. No one can fault you for the decisions you made out of love, caring, and compassion. I am in no position to tell anyone that their personal decision was right or wrong. It was best for them at the time. My original response was a gut reaction to your comment on my blog. After re-reading my response, I thought maybe the tone might have come across as harsh or judgmental, which was not my intent at all. My quarrel is only with the medical establishment and others that want to say what quality of life is worth living. I want to let others know that life on a ventilator is not a bad or painful way to live. We have come so far from the iron lungs of the past. Please accept my sincere apology if my original response came across as unloving, or uncaring or judgmental in any way. That was not my intent. Sincerely Deana

My Original Response back to the above poster:

Anonymous first off I am not the mother-- I am the Aunt. Second you are so mistaken on everything you just postulated. Samuel has a wonderful quality of life- Did you not look at the pictures? He laughs, he smiles, he plays, he has favorite toys he loves to look at himself in the mirror, he interacts. He even has a teacher who comes and works with him and he can push buttons and operate a computer. He has been to Disney World, and Sea World and to the beach, He has felt the sun and the breeze on his face, tasted the wonderful taste of all kinds of food including candy, and smelled the roses. My sister-in-law and brother-in-law take him for walks (the ventilator is portable) They take him to church regularly. They take him over to family and friends houses. You were told that these children would have a poor and painful quality of life but that is not the case. You were lied to. My sister-in-law chose to have him ventilated so he could survive. if God want's to take him home he can certainly do so on the ventilator. And miracle of miracles he has been off the ventilator for up to 4 hours (but it might have only been 2- I am not sure I don't remember what my SIL told me) So who knows. No-one has allowed these children to live long enough to actually know what their potential is. My sister-in-law was told he would not do almost all the things he is doing. And for what you ask?- For life the simple joy of life and for hope. Maybe his life is meant to give others hope. You sound like you were given no hope for your little one and made decisions accordingly. Samuel is 4 years old now who knows how long he will continue to live and thrive .

Here are the links to the many blog posts I have done on my nephew Samuel with many pictures and a video that show his quality of life.
(In order from most recent at the top to oldest post at the bottom)

Chose Life Story, Samuel living with Thanatophoric Dysplasia

Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 4 years old!

Samuel's Belly Laugh (you tube video)

Update: Sam a Surviving 3 1/2 year old Thanatophoric Dwarf has Fun at Sea World & Disney

Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 3 years old!

Love, Hope and Miracles; Miracle Baby

Pride is the Opposite of Loving Your Neighbor: My thoughts on spritual pride.

Wow Wow Wow my insight for today.

I needed to write it down before it disappeared from my mind.

I was contemplating the sin of pride and had an "a ha" moment. I was reading and this popped out : Pride is the opposite of loving one's neighbor. I never actually thought of pride like that before. Pride = a desire to be more important, more special, or attractive than others, failing to acknowledge the good work of others, and excessive love of self. Dante's definition was "love of self perverted to hatred and contempt for one's neighbor. Hmm this led into my thinking about spiritual pride (which I have been and still am guilty of from time to time). I truly never equated pride with not loving my neighbor. To feel superior and/or spiritually superior to anyone is pride. The feeling I am special or better than you because I am a Christian or a better Christian than you or I am a more faithful Christian, or I am more pleasing to God because I do this or that, is not just pride but it is hating your neighbor. Even the thought, "I'm saved but I am not so sure about you" is very prideful and presumptive. Ok sorry for the sermon, I didn't mean to be preachy or anything just my "a ha" moment.

I also realize it is almost impossible to be completely humble and not the slightest bit prideful. I certainly am very prideful in many areas. Pride and humility are on a sliding scale and as one increases the other decreases. The best I can hope for I think is to keep them in relative balance and hopefully not let pride completely take over.

It is also way too easy for me to spot the spiritual pride of others, probably since I have been there and done that. I also think that pointing out the spiritual pride of others is a way of being prideful too. It is kind of a catch 22, so I need to stop myself when I find I am doing that, which is all too often. I can look back and say wow I have come a long way in this area looking back on 20 + years and I need to remind myself that others may be struggling with their own spiritual pride and they will grow and improve in the area too. I need to be concerned with my spiritual pride and progress alone, take out the plank in my eye.

How to Make and use an Advent Wreath at Home in Family Devotions

(parts of this taken from other websites)

My Advent Wreath (not homemade)


Here are some other pictures of advent wreaths

Make an Advent Wreath at Home

Did you know that Advent wreaths were originally used
in the home? They didn’t become popular in churches
until the middle of the twentieth century.
You can make an Advent wreath with either four or five
candles.

How to Make an Advent Wreath
To begin, put four candles on a wreath or at least in a
circle. Traditionally the candles are purple, because in
antiquity, purple dye was very expensive and it was the
color of royalty. We use purple for Advent because it is
the season of the coming of the King. If you can’t get
purple candles, you can substitute blue ones. You can also
make one of the candles pink if you like—technically, it
is rose colored. The Pink Candle is put traditionally in the 3rd week spot. The third candle, usually for the Third Sunday of Advent, is traditionally Pink or Rose, and symbolizes Joy at the soon Advent of the Christ. It marks a shift from the more solemn tone of the first two Sundays of Advent that focus on Preparation and Hope, to a more joyous atmosphere of anticipation and expectancy. Sometimes the colors of the sanctuary and vestments are also changed to Rose for this Sunday. If you have a fifth candle, it goes in the center of the wreath and it should be white and is the Christ candle.

How to Use Your Advent Wreath
The idea is to use the wreath in conjunction with worship
services or personal or family devotions on the four
Sundays in Advent. You light candles at the beginning of
each service and snuff them out at the end.
• On the first Sunday in Advent, you light the first
candle. Have your service, then snuff out the candle.
• On the second Sunday in Advent, you light two
candles, first the one from the previous Sunday, then
the second one. Have your service, then snuff out the
candles.
• On the third Sunday in Advent, you light the two
candles from the previous weeks, in the order you lit
them before, then you add the third one. Have your
service, then snuff out the candles.
• On the fourth Sunday in Advent, you light the three
candles from the previous weeks, in the order you lit
them before, then you light the fourth one. Have your
service, then snuff out the candles. You should get a
stair-step effect, since each candle is a different
length by now.
If you have a fifth candle in the center, then on Christmas
Day you light the four candles in the order you lit them
before, and then you light the center candle. Have your
service, then snuff out the candles.
You notice how I emphasize snuffing out the candles at
the end of each service? This has absolutely no liturgical
significance whatsoever, but it is vitally important and
you must not leave it out. It prevents the candles from
burning your house down.
I recommend that you snuff out the candles, rather than
blowing them out. The reason is that if you blow them
out, you might spray hot wax over everything.
Prayers for Use with the Advent Wreath
When you use an Advent Wreath in personal or family
devotions, you can use whatever scriptures and prayers
you like. If you need a point of departure, here is
something to get you started. Please don’t take it as a set
form. You can use different readings, you can modify the
prayers, and you can add hymns, carols, or other prayers
as you like. (Here are some Other Suggestions for Advent Readings and Songs)

On the First Sunday in Advent
• Light one purple candle
• Read Isaiah 60:2-3
Lord God, we light this candle to thank you for your
Son our Savior Jesus Christ, who is the light of the
world. We who have sat in darkness have seen a great
light, the light of Jesus Christ, our salvation. We give
you thanks and praise in Jesus' name, because he
lives and reigns with you in your glory, and in the
unity of the Holy Spirit, Amen.

(Opt) Sing: O come, O come Emmanuel

On the Second Sunday in Advent
• Light two purple candles
• Read Mark 1:4
Lord God, we light this candle to thank you for your
Son our Savior Jesus Christ, who is the way. We who
like sheep have gone astray have found the way to
you through Jesus Christ. We give you thanks and
praise in Jesus' name, because he lives and reigns
with you in your glory, and in the unity of the Holy
Spirit, Amen.

(Opt) Sing: Come Thou long expected Jesus

On the Third Sunday in Advent
• Light Two purple candles and the Rose Candle
• Read Isaiah 35:10
Lord God, we light this candle to thank you for your
Son our Savior Jesus Christ, who brings us great joy.
We who have walked in the shadow of the valley of
death have found life in the resurrection of Jesus
Christ. We give you thanks and praise in Jesus' name,
because he lives and reigns with you in your glory,
and in the unity of the Holy Spirit, Amen.

(Opt) Sing: Joyful, joyful we adore thee

On the Fourth Sunday in Advent
• Light all the purple candles and The Rose Candle
• Read Isaiah 9:6-7
Lord God, we light this candle to thank you for your
Son our Savior Jesus Christ, who is the Prince of
Peace. We who live in discord and strife have found
peace in the promise of eternal life, through Jesus
Christ. We give you thanks and praise in Jesus' name,
because he lives and reigns with you in your glory,
and in the unity of the Holy Spirit, Amen.

(Opt) Sing: Come Thou long expected Jesus

On Christmas Eve or Christmas Day
Remember, it isn’t Christmas Eve until sundown on
December 24!
• Light all the purple candles the Rose Candle and the white candle
• Read Luke 1:68-79 and Luke 2:1-20
We praise you, Lord God, because on this day, your
Word became flesh in our Savior Jesus Christ, was
born of a woman, and walked among us as a man.
Help us to imitate your incarnation, by manifesting
our faith in our conduct as well as in our speech. To
you, O Lord, we give our honor, praise, worship, and
love, in the most holy and precious name of the One
who is born today; because He lives and reigns with
you in your glory, and in the unity of the Holy Spirit,
Amen.

(Opt) Sing on Christmas Eve: Silent night
On Christmas Day: Hark, the herald angels sing, O come all ye faithful

Chose Life Story, Samuel living with Thanatophoric Dysplasia

As most of you know my nephew Samuel was born with a condition called Thanatophoric Dysplasia which is a condition that is considered incompatible with life. My Sister-in-law and brother-in-law went against Doctors wishes and did not have a therapeutic abortion. A few weeks ago Spirit FM 90.5 aired their story This is an audio file of that story that aired on Spirit FM.

Here is the audio Story/ Interview that aired



Here is a link to some pictures of my nephew Samuel
Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 4 years old!

Samuel's Caring Bridge Website


Tags: long-term thanatophoric survival, living thanatophoric dwarf, thanatophoric dwarf turns 3, laughing and happy child with thanatophoric dysplasia, Living with thanatophoric dysplasia, surviving thanatophoric dysplasia, living on a ventilator

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