I'm a parent of a special needs child. She suffers from 2 rare disorders which they have given her delays, epilepsy, and feeding issues. She has been diagnosed with autism and intellectual disability, as well. This is my blog about my life raising a special needs child.
Sunday, May 1, 2011
ugh
I haven't written even though this is probably the time I should be venting the most. I can't believe how many times we have been in the hospital lately. It's been 5 times in 2 1/2 weeks and a total of 8 days in 17 days. I really don't feel like I can handle anything else. I've spent three weekends in a row sleeping there and I can't do it anymore. I used to live for the weekends to catch up on sleep, cleaning, and relaxing and I've experienced none of that. I feel like I need a maid to live here and not get paid because we all know that teachers are poor. I need a break. I really don't want to resent my daughter, but I hate that I have no life. I knew having a baby would change things, but I had no idea it meant giving up everything, and I seriously mean everything. I never get to go out with friends and I never get to go to bars and see my husband play and I never get to go out with my husband. I mean who is going to watch my daughter. I can barely handle it, so how is anyone else going to help? I would give anything to not have to work. I just need time. I can't work all day and then deal with a sick child all the time. I love my daughter to death. Why does she have to go through this? Why did this happen to our family? I thought I was past this point, but now that there's so much going on, I'm back to it again. I feel like I'm losing hope and faith. I never in a million years thought this would be my life. I never thought I would have a child that can't walk or talk to me. I usually look at the positives of her milestones, but I just don't have it in me now. I feel so burnt out. I wish we had the money to get away. I would give anything to go to Disney. Liv just adores Mickey. I'm sure it will take us awhile to save up that kind of money. I just want to get away, even if it wasn't Disney. We need a break away from this place. We just need to go somewhere that we can enjoy the day and relax. I don't think I know what that feels like. Considering the last escape to AC resulted in a seizure on the way home. We got to put over on the side of the highway to undress our daughter to give her meds rectally to get her out of the seizure. I think I'm going to try to get out of work again, but I don't know how easy that will be since I was out 6 months last year. I thought spring break would rejuvenate me, but we spent time in the hospital instead. I would love to have another child, but I mean really, how could that be feasible? I would love to know what it feels like to have a child more on their age level and one that eats. Don't get me wrong, Liv is great!!! She is so affectionate. She is my life. But I just wish I didn't have to give so much of it up!
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