alizesmom
Dreaming of Disney.
- Joined
- Jun 17, 2007
- Messages
- 1,462
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
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
