Anj's comment struck a chord in me, as she usually does. I realized that like so many things I tend to sugarcoat my writing when I talk about Emily. I do it even to the people who know me in the "real" world. I'm not sure why.... I don't know, maybe it embarrasses me for you or anyone to know just how limited she is... maybe in some misconceived way I feel guilty. Maybe it stems for that old "stinking thinking" religious crap we were drilled with for so long... pretend like everything is okay, keep believing God will heal her and if that doesn't happen it is because I didn't do something right.
Well, believe me, I've done a lot of things wrong, a lot of things I would change if I could get a re-do but Emily's retardation is just not my fault.
It's hard for me to tell you that she is so morbidly obese that I worry about her life. It makes me feel like a horrible Mom because I can't seem to change it. I don't usually tell people the reason I never leave her for more than a few hours is because she physically can't reach to wipe her own bottom and if I'm not in the house when she needs me she sits on the potty and cries. I don't know what to do about the fact that more and more just walking around the house wears her out, from her room to the living room she is breathing hard and has to sit down.
I can tell you that at night I watch her like a newborn, getting up several times through the night, going to her room to listen to her breath, to make sure she actually is breathing and sometimes to turn her so she can breath better.
That she is not allowed to get her own food (to try to curb her gluttony) so I have to do everything for her.
That three times a week it takes Mark and I both to get her bathed and shampooed.
I will tell you with much joy that she is the light of my life. That she and I sit in her room late into the night and watch tv or movies or play on the computer. That she talks to me about her pretend world where she has a husband and kids and goes on dates to movies and dancing. You on the other hand would probably not understand a word she says but I get it. I understand her.
I love her with every fiber of my being and trying to be honest about what she is and what is to come is not easy.
3 comments:
Oh A, my heart just broke for you. The thought that you could ever blame yourself or feel guilty for any of this is so unbelievable, and yet I understand it. I know what has been drilled into us. I've had conversations with those who say "pray harder" or "maybe their is something in your life causing this." Of course none of it is true.
I know how much you love Emily. I've seen it in action so many times. I can't even imagine how it must feel. I've said some really stupid things to you about this topic in the past, and I don't plan on doing that again. So I'll just say that I love you and if it were possible to share this heavy load I would.
Thank you for this writing A. The stigma attached to being honest about how disabilities and mental limitations impact those we love is silencing most of the time. You are right, Emily's retardation is not your fault, and you are right, that she needs care most of us can not even imagine.
That "stinking thinking" and "magical thinking" that causes us to hide the reality of the truth we live with has to be the exact opposite of what Jesus wants.
My parents are 78 and my sister is 52 and they still will not talk about what happens when they cannot care for her anymore. I'm not sure they can care for her now at their age.
A- It is a gift to us to let us hear this part of your life. So that maybe you are not quite so alone in it.
I feel the love you have for Emily in each post you name her. That love is beautiful.
You are an awesome mom, Aola. I love it that you can talk about both the good and the bad.
BTW, I recently read about a (what's a delicate way to put this) booty wiper for people who are obese. If you think she could be taught to use it, it might be worth an internet search?
Post a Comment