I dont even know what to write anymore. I dont even know what to say when people say - I hear Megan is doing great. It is one of the hardest things to answer without sounding like I am wallowing in her disease or a totally negative unhappy, unappreciative person. You would think this should be one of the easiest things to respond to....Great is not a word I would use to describe how Megan is doing...and I feel like an ass for even saying that. While I KNOW that she has made huge progress from last year with coming off the vent and having her trach removed, there is so much still going on every day. Seizures just plain suck. I am not even counting them through the day anymore. It is too sad because I know they are peeling away at her and we have tried everything to stop them. And we have the muscle spasms where she is stiff as a board and crooked all at the same time. It is getting very difficult to hold her and comfort her through these because of her size and her strength. She has a very strong right fist..I have great bruises to prove it. The crying fits from pain are also very painful, for all of us. I am so angry that nobody can stop her pain. It is so unfair to watch this. Yes - I am asking myself quite often why, why, why? And the disgusting stoma that wont close is driving her crazy - and me - it is an oozing snot hole that gets clogged up - so gross. I think she feels like her air is stifled at times because of it and it stresses her out, which then leads to the muscle spasm, which then leads to a seizure, and crying, and on and on - every day - all day - throughout the day. God help her if she does not go to the bathroom in the morning - we just add the stomach discomfort in for some extra fun. I probably sound like an insane person but it is how I feel. It's one of those days that I have had it with all of this and dont know what to do anymore which then makes me feel guilty because in other aspects of my life I know I have so much. Guess I might kind of be feeling like I'll be punished someway for feeling so pissed off. I really feel like punching my fist through a wall and screaming until I have no voice left. Ryan was trying to read Ripleys Believe It or Not to me tonight but couldn't because of Megan's screaming - what else is new. He takes the backseat again.....which I'm noticing is starting to wear on him. He feels unimportant. Sandwiched between James who is the oldest, in high school - funny, and between Megan who is so pretty and so sick and needs so much. I guess I would feel that way too - middle child and 4 years of this.
We do have some nursing and I get to sleep at night now. Huge bonus. It is helping me to feel more human. Day nursing is not so great I find. They have NOOOO clue what to do with Megan. The nurses that are here for a few hours a day seem to think if we just keep pumping drugs into her and request more and more, stronger and stronger it will help her. So what - drug her up like a patient in a mental hospital???? Would they drug their kid up that way? I think not. She is cognitive of her surroundings and loves, loves, loves me. So lets take that away from her too....they are callous and ignorant mostly. But I am in a catch 22 - I can not do this without people that can work a gtube, feeding pump, nebs, meds....a second person to help carry all of her crap to ALLof her 10,000 appts a week...it is exhausting. And it is stressful to have to manage all of their personalities - they are all women so lets face it - it gets interesting. Of course there is always the sunny disposition I am always supposed to have with them or else I am a bitch. It is hard to always have the sunny face for everyone around me - my kids, my husband, my mom and mother in law, nurses, doctors, therapists...........AAAAAAAHHHHHHHH! I just want to be left alone.
Ill figure it out - probably by tomorrow morning, and hopefully I'll deal well for another while...
I absolutely love Pat and all of my children and the rest of my family and would die for any of them- it all just is a bit much sometimes, thats all.
5 comments:
Since your daughter is to sick to go to school, u need to request from the board of ED to get her home school teachers and therapist, also apply for Medicaid ,once you are on it apply for Medicaid waiver, that my help you a little bit also find agencies that provide respite services .
Board of Ed denied her any home schooling except for her deaf and hard of hearing and vision therapy. Her therapy is not educationally relevant. We got medwaiver which is how I finally got some nursing. I am finally getting to sleep at night after 3 and 1/2 years of sleeping a couple of hours a night only. If we would not have pushed so hard to get her off the list - I mean pushed - it would have been impossible to function at all. She is 24/7 care.
I hate the questions of "how is she doing" too....it is such a tough one to answer. Not great but better than yesterday, kind of, I dont know. I know people mean well when they ask, but it is so tough to answer questions when you have such a medically fragile child.
So glad you have gotten some nursing and getting some sleep.
Going to so many appointments and therapy sessions, or just getting out to go shopping is so tiring, so dont feel bad that you are venting. We all have our days when we want to just scream at everyone. I know I do. There are days I feel so blessed with what I have, and days I feel terrible that I am asking God all the why questions and feel bad that I am not more thankful for what I have.
Then you add in the rest of the family, and trying to lead a somewhat normal family life...is there really such a thing?
Geez am I overtaking your vent with my own vent...hopefully not...just know you are not alone and you know maybe those nurses that expect the sunny disposition just need to hear you crying in from another room someday, so they can get that you are not always sunshine and roses and you have breaking points too!
(((((HUGS))))))
I prayed for your family at our church this week. Your story has touched me and I can only imagine what you're going through. Seek help in anyway you can. There are people I'm sure who are willing to offer help. God Bless you and your family. Megan is a special young lady.
Terri, I truly can understand the way you feel. There are still times when I still need to be alone, just me ,myself and I to
re-group.
I never did feel the need to put on the happy face for people when it was my child's care in question.
However I did sort of wish I could own an island and keep everybody else off it with a huge wall.
It's sort of sarey when you need others to help and don't feel that you can really trust them.
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