We went home on Thursday night after me begging to go home because I was hoping Quinn would do better in a home environment. He came home with the feeding tube so in case he didn't eat I could feed him through the tube. He is also getting his meds through the tube for now because that is one less battle for me to fight right now. Thursday night he ate all his *food* an same with Friday until night time... then he threw up. Saturday he refused to eat all day so I had to tube feed him all day.
So I am just so frustrated, exhausted, ready to quit life at this point. It seems whenever things are starting to look up just a little everything goes crappy again. I am missing the girls soooo much an cant wait for them to come home. BUT honestly have no clue how I am going to do this when they are home since Quinn takes all my time. I don't even have time to me to eat never mind take care of the girls. My day goes like this... Up with Quinn, help Quinn through some seizures, measure and weigh food, prepare food... beg Quinn to eat it. Then an hour later end up making him stuff for a tube feed which needs to be weighed out ( since he didn't eat anything). Then I measure out all meds and have to give the meds, deal with a few more seizures. Play with Quinn a little bit and then back to trying to make a *meal* an get Quinn to eat again.....
OK now into the selfish rant ... ;)
I am tired, exhausted, just cry at the drop of a hat. Wonder how I am going to get through the next hour, angry, annoyed, sad and just not understanding WHY. It is just soooooo hard to go 3 years with a healthy normal boy and then in 10 weeks reach the point we are at with a not to positive future. I have no clue how to accept this and be happy with this because honestly I hate this. I was a negative person before this all and not a happy smiling lalalalala person like some people. SO how to deal with this...It seems like there is a crappy surprise around every corner. We have to fight for everything for Quinn, everything is a battle. From his meds not being covered to waiting lists to him not eating.. the list goes on. I try SOOOO hard to think of positive things about this situation and I cant find too many. I am sad and angry every time I go out and see people with healthy children.... they have no idea how blessed and lucky they are. I am angry and annoyed at all the adult people that just stare at Quinn whenever we go out because of his feeding tube... Just ask me something instead of staring and more staring ! I am angry and sad that my poor boy has to go through pain each day and frustrations. That he has to hit his head several times a day and he can't do the things he used too. It hurts me so badly when he says Mom lets make cookies or mom I want toast... and he can't have any of that. Long story short... I am hurting, sad, angry and frustrated. I really am trying to be happy because I hate feeling like this. But whenever Quinn has a few good moments and I start to think we can do think then everything comes crashing down....
Now off to start my day with begging Quinn to eat something....and trying to convince him we aren't poisoning him !
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