Finally some sleep

Last night I finally got some sleep. Of course my dreams did not take me far away. I wish they had. I wish at least for a few hours I could escape the realities of my life. Before I went to bed I was reading a few blogs, a few medical websites and a few things really stuck out in my mind. One was that everything with a down's child is uncertain. We won't know if Sean is going to be high functioning with mild retardation or whether he's going to be severely retarded with major physical handicaps. And with everything I read, more things come to light. I never would've thought to think about whether he'd have hearing or vision loss.

I was reading this site, http://www.aheartbreakingchoice.com/t21mom.html, and this stuck out.... "Of the handful of parents we know with a child who has Down syndrome, about half opted for prenatal genetic testing in their subsequent pregnancies. These parents told us they would never subject another child to what they have seen their child with Down syndrome endure."


I can't tell you how that statement scares the ever loving hell out of me. If we do decide to have more children I will most certainly opt for earlier testing. I don't know what my choice will be if something is wrong, but I want the choice. 


Of course I went to sleep with that statement on my mind. It has only served to reinforce my belief that I am incapable of caring for a down's child/adult. Of course we were also watching a show on discovery about the real "Rain Man". I marveled at how dedicated his father was in taking care of Rain Man's every need even at 70+ years old, but he looked exhausted. The more I thought about it, the less I want my children still living with me when I'm 70. Even more.... I don't want to still be taking care of their daily living needs (showering, dressing, etc) for them when I'm 70. I just don't think I have that kind of will & dedication. Would I do just about anything for my kids? Yes, but I want them to be able to go home. It's kind of like when Meredith goes to bed. She's going home & I get a break. 


I also thought about frustrating Meredith can be at times. Sometimes I have a real hard time coping with her tantrums, non-napping days, eating issues, etc. I find myself wondering, "what the hell was I thinking by thinking I could handle being a mother?" I can't even imagine how frustrating it would be for me to have a special needs child. 


This morning I woke up & the weather matched my mood. Dark & dreary. I swear if it hadn't been for alternate side parking, I'd probably still be in my pjs, M probably wouldn't have eaten & I'd be pining away for nap time so I could crawl back into bed. Not that I'm not still pining for nap time. 


Instead we got dressed, went to breakfast & then jumped in puddles. If it weren't for Meredith, I'd probably never get out of bed. I don't want people smiling at me when they see I'm pregnant. I'm tired of the comments like "wow you're gonna have you hands full aren't you?" I feel like screaming "YOU HAVE NO IDEA!!!!" I don't want people to ask how it's going or when I'm due or anything you'd normally ask a happily pregnant woman. I'm not a normal pregnant woman & I'm getting tired of pretending for everyone. I'm not happy. I'm not even sure I'm coming home with a baby when I go into labor. 


I'm also increasingly jealous of people who get to have 2 or more normally developing children. This is increasing my desire to not go out until we've reached a final decision & it's over. Ya know? The jealousy is just adding to my already increasing bitterness. 


I've started to think about what I'm going to tell people if we do decide adoption is for us. When people ask where the baby is I'm just going to say there were complications. It's not a lie & I don't have to go into details. 


I've also started to wonder how I would feel if I got an update that Sean hadn't made it through his heart surgery and we'd given him up for adoption. I feel like the guilt would kill me. Yes it's 99% fixable. Yes the odds are with him, but what if? 


I'm tired. I'm drained. I feel like no matter where I turn there's something else weighing on me. My shoulders can't bear anymore. I wish I didn't have to make these decisions. I really need someone to not tell how wonderful it is to have a down's child. I need to hear the nitty gritty. The truth about how hard it is. The truth about what a down's child & then adult is really going to need from us. I'm tired of feeling like people are sugar coating raising a child with special needs. I do the same thing with Meredith. I don't tell people the horrible truth that there are just some days I need to get the hell away from her because the whining, screaming, kicking, head butting just wears me out. I don't tell people the ugly truths about parenthood. No one wants to hear those things. 


I'm off to find a good rainy day activity for Meredith & I to do.