Sunday, December 18, 2011
life
So I am not sure if I have any folks still reading the blog but thought just in case I would come to yall. I am wondering what yall think give quality to life? what does that mean? what is value in a person? what things make someone have value? what to you constitues suffering? I may be opening myself up for who knows what by asking these questions but I just want to hear what yall have to say. Please if folks do start responding dont argue with each other but just share your thougts and feelings. Also please be in prayer for our family in so many areas. and for me personally and for Jeremiah specifically as well. For those praying, Bobby did get a job and is one week into training. The pay is very very low but its a job. He does seem to like it so far and is doing his very best at it. I am blessed by him. Anyway, please share your thoughts about life.
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The FIRST Picture we EVER saw!
Noah WesLee 5 months old
The First Picture we ever saw of:
Jeremiah Harold Sisemore ~1 year
9 comments:
Tami, God created us and as such we have value just in that, regardless of what we can or can not do. God has his purpose in our lives even if we don't understand it. God made Junior like he is for a purpose, Junior's disabilities are not a surprise or mistake, they are part of Gods plan. I am in the midst of reading Life Without Limits by Nick Vujicic and he touches on all of this.
"Quality of life" is an excuse people make for takinganother life into one's own hands. God gives life--and each life is quality because it is from God. Only He has the right to end it.
I volunteered at a daycare center for years. Two of the workers adopted a precious daughter who supposedly had maybe just the stem of her brain. They were told she would do nothing. But "K" is amazing. I saw her wheel herself around in her chair. She smiled, she laughed. She taught me that only God knows what somebody is capable of doing. "K" was created just as she is--perfectly in the image of God--and He made her the way He did intentionally. Her life is of the highest quality. She is loved, and she teaches people things that others cannot. Her purpose on earth is different than the purpose of those who were given a whole brain--but it is just as significant.
I think a lot of people would share opinions that I have, but would choose not to comment out of fear of being crucified in your comments section.
I believe that an unfortunate result of modern healthcare is prolonging the suffering of people with terminal conditions being called home to God. If I, my husband, or a child of mine is faced with a terminal condition that will not improve... we want to be fed, made comfortable at home, attend to our spiritual needs, and let God call us home when it is time.
If you are asking these questions about quality of life, consider a consult with a pediatric pallative care physician. Pallative care helps enhance to quality of life and helps provide options for children and their families facing life threatening conditions.
http://www.aap.org/sections/palliative/WhatIsPalliativeCare.html
I believe that God gives life. Each life is created by Him and He has a plan and a purpose. We are His vessels carrying out His plan for our lives. In that, we have to remember to keep our focus on Him.
If someone, my husband or children, were suffering with a terminal illness I would want to make sure they are comfortable and would want to enjoy all the moments I have left with them. Jesus knows the number of our days.
Hi Tami! I'm so glad to see you continuing to blog. I'm here reading it, and I don't do Facebook, so please continue. I've been praying for your family ever since you started this blog.
Every person is created by God, no matter what he/she can or cannot do. We are all loved by God. I can't answer "quality of life" questions, and I think that some things are beyond the scope of our human minds. I would think that if a person is suffering, that suffering should be treated. I also think that keeping people alive on machines, when there's no chance of a cure isn't a good thing. I'm not talking about a temporary need.
My husband and I have lost 3 parents in the past 18 months. They were all 90 or older. They lived in nursing homes and got excellent care. We chose hospice at the end - no machines, no extraordinary measures. We know that's how they would've wanted it handled.
I will be praying for your whole family, Tami, SO glad your husband has a job, and I'm praying for Jeremiah as well.
Hugs and Merry Christmas,
Susan
You can write me at: moot96 AT aol DOT com
I think you shouldn't worry right now about this Tami. Miah is no where near the condition where you would need to be faced with these kinds of decisions... When it's time to make this kind of decisions, your God will help you. You will know if your heart when it is time to say Good-bye... Not by what doctors say or do but by what you see and feel in your heart. My wish is that when the time comes, your God will make these decisions for you. Unfortunately I don't believe that is always part of the plan and we are forced to make very hard choices. If you are forced to make this kind of decision, I am confindent that you will be able to.
Jeramiah is beautiful Tami. It is obvious that he gives you every bit of love,joy,comfort and happiness that you give to him.
Please do not let worries of what the future might hold keep you from enjoying what is right in front of you now.
Kisses in the wind to both of those Sisemore boys!!!
Big hugs to you my sweet friend.
You and Bobby will get through this. I have faithe...
Quality of life.
For me, personally, living with my two profoundly disabled girls, quality of life is what I choose over quantity. That means, I choose the treatments, the therapies, the surgeries, the drugs, which improve present quality of life even if they may end up reducing the quantity of life the girls have.
How that looks is different for each girl. For A, I choose multiple complex surgeries in the belief that this will improve her quality of life in the longer run. She will have a miserable few months coming up with two major ops one after another. But, after that, God willing, she will have more independence, be healthier, and be in less pain than she is now.
For I, we have taken the decision that she will have no more surgeries (unless there is something immediately life threatening which a short surgery could fix). Instead, we take a conservative and palliative route with her treatment. We manage her pain, treat her symptoms, do whatever we can to make each and every day as good as it can possibly be.
It means for her that we will take an hour of happiness followed by 23 of sleep, rather than 18 of awake and alert but miserable. We'll take happy and comfortable lying down over being forced into splints and braces and other devices which are tortuous for her.
I'm not saying that's the right choice for everyone. I make very different choices for each girl, depending on what we believe is right. But what I do try to manage to do is make decisions which will prolong the life of the child, not prolong the death of the child. That means that with I, we have ruled out certain treatment options (she does not have a full DNR, but there are things we specifically do not want Drs and medics to do in the event of an arrest) because we believe that certain things are extremely unlikely to prolong her life, and I don't want her last minutes on earth to be spent with someone jumping up and down on her chest.
That wouldn't have been right for us a few years ago, and things may change again in the future, but for us, right here and now, we have a plan for the most likely critical events in her life, and it is a plan which specifies which treatments we will and will not try.
The flip side to that is that we now have far more treatment options available to us at home. There's nothing stopping me taking her to hospital if I need to, but equally if I decide to keep her at home in a crisis there will be no criticism of that decision. That's not necessarily where you are with your precious boy, and that's ok. It's just what is right for us. I know that my I gets weaker after each infection, gets huge infections after any anaesthetic, and so we have decided some things would merely prolong the inevitable.
The other side to that though is that I do firmly believe she has a good quality of life right now, despite the fact she is non-verbal, in pain a lot of the time, profoundly physically disabled, unable to eat, fully dependent on others for everything she ever does. She has a good life, and I don't allow Drs to make judgements based on their misinterpretations of that. We aim to live deep if we can't live long - making the ordinary extraordinary - who says you can't have a blast at the supermarket if flourescent lights make you giggle, just trying to find special things, small things, every cay.
Today, it was a drop of gravy and a hint of a lick of chocolate, it was a bounce around outside in the wind. That's enough to give the day a sparkle - and days with sparkle are good days in my book. I choose to concentrate on that and not the huge amounts of drugs it took to break the screaming spasms she was having at other points during the day.
I found Tia's comments beautiful, especially this phrase. "We aim to live deep if we can't live long - making the ordinary extraordinary - who says you can't have a blast at the supermarket if flourescent lights make you giggle, just trying to find special things, small things, every cay."
Tami,
I would definitely seek out the support of a palliative care doctor/team. They are all about quality of life. This is not, repeat NOT, hospice. This area of medicine is all about quality and maximizing comfort for a child or adult who may have a life-limiting disease or condition.
I did homecare for a number of years for children very much like Jeremiah. They were happy and healthy at home and treated as much like typically developing children as possible. Their comfort was our top priority, which meant that painful procedures which would not improve the quality of their lives were minimized. I had to say goodbye to several of these children, but I took comfort in knowing that I had helped them be as comfortable as possible and to truly enjoy their lives.
You are giving Jeremiah the very best in life. Whatever decisions you make for him will be the right ones because you will make those decisions in his best interest.
Much peace to you and your family in this great new year, Allison
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