Tina, Re: Introduction; seeking realistic support...

[Guest guest]

Tina, i feel you, its only been two years though (while there are some who

have endured this for a decade or more) caring for my husband at home,  who

survived a moving vechile accident, (along with two young kids and limited

money) sometime i think, the doctors just had to play God and rather than let

him rest and go to heaven, the doctors just had to do a heroic rescue and put

him on life support, he has severe brian injury and is completely dependent (the

quality of his life is not great but i do what i can, put his favorite shows on,

buy him neat clothes, he goes everywhere we go, park, church, shopping etc..) ,

i am his voice when he is away at rehab hosptial i constantly worry about

someone mistreating him taking advangante of him, and his mental health ( i know

he understand what goes on around him but he is stuck inside his head), as

for the thepary it feels like he is giving up i told myself if he doesnt

improve by x years from now i

will let him take it easy for the rest of his life..... but I realized i cant

ever stop searching cant stop encouraging him to stand up to feed himself dress

himself, I CANT do it ALL no one can do it all and make everyone happy

so I put it all on Gods hand, and I take it one day at a time, do the best I

can and I have prayed so many time to God (ask and ye shall recieve) to allow

me to live long enough to care for my husband until my kids are older to support

themselves and can at least check on him that is if they want him in a nursing

home... i put my hope in the rapture knowing Jesus is coming soon, i will be

able to see my husband smile again and be able to break free from the bondage of

his body rising to the sky... much peace to you and i cant tell you what to do

search your heart He will tell you what to do... steph

________________________________

From: mightymousies <mightymousies@...>

medicaid

Sent: Fri, February 19, 2010 3:04:40 PM

Subject: [ ] Introduction; seeking realistic support...

 

My name is Tina and I am the mother to 3 multiply challenged children. I am here

to specifically focus on my daughter Mackenzie today (age 12). Mackenzie was

born at 23 wks gestation and suffered from anoxia for several hours during her

2nd wk of life (which I didn't know the extent of until she was 2). Over the

course she's been dx'd with severe MR, blind (no light perception), epilepsy,

CP, and now a very servere and seemingly rapidly progressive case of scholiosis.

She is mobile and attends a school for the blind/multiply disabled. She does not

talk, and is in diapers. She is happy in her own right and has a normal life

expectency.

I personally define myself as a realist. I try to live by a standard that

permits me to enjoy life as it is, helping others, without denying the reality

of what our lives are. Mackenzie is my greatest personal challenge.

The day she almost died, I was burying her sister. The doctor beleived she would

die, and I later learned that is why my husband (ex) and I weren't given the

full explanation of her situation, nor the option to remove her from life

support.

Every day of my life includes at least one thought of what will happen to my

daughter when I am gone! Her sister's are impaired (although not to her level),

and we have very minimal extended support. We do have a wonderful support

system, but they are made up of those who are my age or older. I then think what

happens to this poor girl as we all fade away over time.

Today, as the surgeon and I discussed her prognosis and options with the

scholiosis (now 58 degrees at its worst place), it dawned on me that choosing to

have her spine fused may be more selfish than helpful. I struggle with how life

will look for her if I don't give her this surgery (she will most likely die due

to lung complications over the next x amount of years), vs. putting her an

extermely painful procedure for which she will not understand, only to prolong

her life, and then what? Nursing home, paid staff, little/no QOL, and eventually

no living family/friend to watch over her and protect her? Due to the surgical

backlog, I have time before I concretely decide what I am to do in the best

interest of my daughter. She is likely not going to be able to receive this

surgery prior to November of this year. As of today, I signed up for the

surgery, because better on the list in case than off... but I am struggling

here. I feel shocked and numb. I feel

alone in this decision, as her father has been relatively absent since my

children were 2 yr old. My fiance' & I have not even spoke of it yet. But I know

he can't appreciate how much this tears on my heartstrings because she is my

daughter, born of me.

Honestly I am just exhausted. After almost 13 yrs I feel like we cannot escape

such painful and horrific decisions. I feel bitter at those medical

professionals who decided for us so long ago. I feel frustrated at having to

even entertain the thoughts of should I help her live or should I help her die.

Anyone of you out there been through this? Any words? I am really intrested in

those who have decided to let go over fighting. I do ask that no one please turn

this into a discussion of " life at all costs " I have gone that route before & I

am not up for it right now. I only hope/pray I find some good support here!

Thanks for listening!

Tina