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Old 08-21-2008, 11:29 PM   #1
Pumba is my hero but I love Donald
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Join Date: Jun 2007
Location: Cochranton, Pennsylvania
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Can I vent, too? Long.

I'll be honest, I've come hoping to get lots of understanding. I don't think I want pity in fact I don't know what I'm looking for. I need to introduce my situation so hang in there.

Married for almost 30 yrs to a loving husband who unfortunately doesn't understand what I need sometimes. He asks what will make me happy, I tell him to do A,B and C. He decides D,E and F are more important things and ought to please me. He really doesn't get it.

Daughter number 1 is working on her 2nd divorce. She has a 2 yr old whom I rarely get to see because daughter is too busy.

Daughter number 2 is doing alright but has 2 boys (age 2yrs and 6weeks) whom I babysit for 3 or 4 days a week. I enjoy this but it can be hard.

Daughter number 3 lives with us while going to LPN school. She has a history of depression and tends to be stand-offish and self-centered. I have a history of depression and understand where she's coming from but would still like to see her contribute a little time to the household.

Son number 1 and his pregnant wife moved into our MIL apartment last month. He's making a half-hearted job search.

We have been helping the kid's financially when we can but things are getting really tight for us.

Son number 2 is 5 yrs old. We adopted him last year after fostering since 2004. He was a micropreemie and has the following wrong with him: profound MR, CP with dystonia, cortical visual impairment, functions on the level of a 4 month old, a tracheostomy, a feeding tube in his belly, seizures, hydrocephalus, colitis and polycystic kidneys. He is a sweet child but dealing with doctors, therapies, special schooling, in home nursing help, medical assistance etc. is overwealming. Dealing with him is no problem. Right now I am sitting in his hospital room because his brain shunt failed and was replaced yesterday. This is the 3rd inpatient hospitalization for him this year.

Daughter number 4 is 3 yrs old and we are working on the adoption. She is developmentally delayed, cortical visual impairment, Chiari malformation, mild conductive hearing loss, an unrepaired cleft palate, hypersalivation, unilateral paralysis of cranial nerves 7,9,10 and 12, no swallow reflex, hypotonia, a trach because her airway collapses otherwise, a feeding tube for reflux, sleeping and behavioral issues. She is mostly a pleasant child and functions on a much higher level than our son. She has been hospitalized 4 times so far this year.

I'm tired people, not of my kids but of all of the crap involved with them. I'm tired of having to argue day after day with someone to get the care they need. I'm tired of having strangers in my home 16hrs out of the day. I know my kids need the extra care given by nurses so we can do the normal everyday things like clean house, get groceries etc. I'm tired of worrying that the next hospitalization will be the one where I will lose one of my kids. I'm tired of professionals who see my kids as "throwaways". I'm tired of getting on boards like the CB to hear people state that they ought to be able to use handicapped parking, accessible restrooms. I'm tired of hearing people brag how they used the GAC pass to use needed space that WDW provides for people like my kids. I'm tired of people who tell me/my kids to suck it up when a term like retard is bandied about. I was told by one poster that my life was humorless and dreary merely because I argued that people could find humor without reverting to insulting a helpless group of people.

For the most part, I have a great (if busy) life. All of my kids, but especially the fragile ones bring me joy in some way. In my house, there is laughter. You can't imagine the excitement/joy that occurs when you're 5 yr old learns to hold his head up with just a little wobble to it or when your nonverbal 3 yr old learns to say mom-mom. Watching my 2yr old grandson gently stroke either of my little ones' heads or hands is precious.

I think what has pushed me to vent to you was learning that the almost 2 yr old son of a friend on one of my support boards died suddenly last night. It was always a possibility but not expected. How do you comfort someone long distance that you have never met or spoken with?

I thank any of you who are still with me. I still don't know what I came to you for. I don't want to be told how wonderful I am for adopting since I get more than I give. I think that maybe I just want someone who isn't in my shoes to try to understand my life. My sisters and father totally ignore my kids. At my church we seem to be "out of sight, out of mind", on my support groups the people get it for at least one part of my kids. I want people to be willing to approach us and actually talk to my kids instead of over them/about them. I don't mind kind questions and interest.

Okay, I'm going to stop rambling and venting. Talk to me, ask me questions, let's chat about things like God and politics (isn't there a presidential election going on?) LOL. Karen
Mom to Gilbete', Jeanette, Andrea, Ben, Alize and Brady (with God), Ciara and Brian. Grandmother to seven.
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Old 08-22-2008, 06:56 AM   #2
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Hey Karen..

Welcome to our little board where strangers comfort strangers and suggest ways to cope or just listen..

I read your vent, and thought sounds like she has it together. Sure I could say wondrous things like how courageous you are to be raising those children with unbelievable needs, but you already know what you are doing and how difficult it is, and joyful at the same time.......you have chosen that road.

I am just going to say here when my husband became ill, I saw family members back away... I am talking brothers, cousins, etc.. back away. No one wants to face what you face daily or what I face. It is too hard for them. I have said many times, it is the kindness of strangers that get me through, neighbors, my gym buddies, or the posters here, the others think if they listen to you or get involved, it could happen to them or you could bring them down with your stories. I say too bad for them and made my peace with it and have moved on. You are doing great and the husband thing, well I have been married 39 years, we will never think the same.. politics, kids, movies, whatever, 39 years and I always have a different opinion than he. I try to accept that he does and either I am happy with that or not, we have great discussions in our house.. Also, children.. our own children, we think we raise them to adulthood and we are done, the job is never done, they are always your children and need help even as adults. As parents, you will be there when they need you. It is human nature.

One little suggestion, this is what I do.. I make lists, if I need something done and I cannot get to it, I hand it to him.. little things, but things that I cannot get to.

You know recently I had a run in with Disney, my husband is disabled...he is terminal and not strong and has the pass that you speak of, but the one I had to fight for. Everytime I think of what Disney put us through to get this pass, I called a manager of the customer service area in Epcot, she was horrified at what we had been through. You know some people have disabilities that are not visible but they are there.... I try not judge anyone on who they are or what they have. Shame on those who abuse that pass.

Anyway, we are here for you.. come and chat...I try not to do politics on this board, we have the CB for discussions like that as political opinions can get terribly heated. This board is about support and kindness to each other as we go through difficult times or if you just need to vent.. This is the place.
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"Great spirits have always encountered violent opposition from mediocre minds." -Albert Einstein
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Old 08-22-2008, 08:08 AM   #3
Have will travel
ABD trips = clothes optional
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Welcome. I think many of us can understand what you are going through. I know I was the main caregiver to my late husband.

Keep coming here and venting. Sometimes our families just don't understand all that we do and would appreciate some help.

That is great you get pleasure with the small things that happen with your children. I am sure that helps get you through the days.

You will find that coming here and posting really does help.
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Old 08-22-2008, 10:58 AM   #4
I am like HELLO IT IS TEN OCLOCK...Anderson is on

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Old 08-23-2008, 08:31 PM   #5
Guarded by Dragons, Gargoyles...and Figment!
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Welcome, and God Bless You!
When life gets tough, we go to WDW!!
1991 - CBR ; 1995, '99, 2004 - Off site
2005 - July 3 - 6 off site, 7 - 10 POFQ
2006 - 3 trips this year - all Disney'd out for now.
2007 - another wonderful week at WDW (off site)
2008 - the saddest year of my life - DH has ALS; AKL for his final trip.
2009 - DH passed on 1/3 - "memory trip" 3/5 - 3/9 with his daughter.
Memory trip 6/28 - 7/4 POFQ - first solo trip, a little rough
F & W Festival trip - 9/24 - 9/29 with sister-in-law - AKL
2010 - 6/19-25, DTD hotel - carried DH in my heart, had a lovely trip!
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Old 08-23-2008, 09:14 PM   #6
If I did the beach would be rolling in laughter
I would be so empty without the mouse
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Karen I had just found this board a few days ago. The ones here are wonderful to chat with. If I am around I would be happy to talk with you and I will say a prayer for you and your family. Shirley
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Old 08-24-2008, 09:18 AM   #7
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Welcome, and know we can empathize with you. I an only child and was my mom's sole caregiver for the 4 years she had Pancreatic Cancer. My mom and I were close, but we still battled, even when she was sick, she wasn't the easiest person to get along with.

I battled with the hospitals and doctors offices and nursing homes, you battle with anyone who isn't giving your loved one good care. Being a caregiver is an exhausting and sometimes hopeless job. We do it out of love but its hard, I took care of mom while working full-time, and having a DH and a toddler and dealing with my own health problems.

Sometimes I just wanted to scream "I give up" but you do what you have to do because thats what you do....

My Doctor actually sent me to Disney World last September - he said either go on vacation or I put you in the hospital because I was so stressed.

Mom died in Feb. 2008, and this has indeed been the WORST YEAR of my life but I know I took good care of her and did my best - in the end that's all that really matters.....

God Bless..................
8/86 - offsite, 10/99 offsite, 9/00-Honeymoon CSR
5/01-CSR, 9/02 -CSR, 9/03 -CSR, 9/07-POP,
9/08-AsMu, 12/11 - Lucie's 7th Birthday Surprise Celebration -POP
April 2013 - Disneyland here we come!

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Old 08-24-2008, 07:05 PM   #8
They're not microphones. You don't have to speak into them
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I am tired from reading your post so I can't imagine how exhausted you must be both mentally and physically. It sounds like you take care of everyone, but please take care of yourself, too.

A woman's place is in the house.....the White House!
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Old 03-23-2010, 12:39 PM   #9
Earning My Ears
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what is protocol?

When someone vents do we just listen, or do we offer advice? I am sorry for what you are going through.
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Old 04-07-2010, 11:37 PM   #10
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I am by no means "in your shoes" I just want to give you a hug and thank you for being you, I am sure you are a blessing to so many people.

It's ok to be tired, it's expected, it's ok to get mad and vent too.
I hope you are doing better now and I will be praying for you.
Castle wishes and Dole Whip dreams....Sept 2015

This freezing weather is crampin my style A Dec 2010 TR
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