Wednesday, September 22, 2010

read with care intially posted to facebook May 28

I went to the library to get a book yesterday. It was a more difficult task than I anticipated. I know that she told me that adult nonfiction is on the 3rd floor but somehow I ended up on the second floor. The children’s section. A nationally recognized children’s library. I got off the elevator and before I could slip back on unnoticed it disappeared to the floor I was probably supposed to be on. I think I just stood there for a few minutes, I am not really sure. I vaguely remember looking over at the librarian and saying something about adult nonfiction on the third floor. I pushed the button for the backstabbing elevator and felt that familiar wave come over me. The one that turns a fairly sane thirty year old women into a heap of tears and snot. I don’t even remember if there was anyone on the elevator going up, I just looked at the floor and hoped not to make a total fool of myself. The book I was looking for wasn’t even on the third floor. I gave up, left the library looking a little dazed and ordered the book on

It’s hard to describe my world right now. Not because it is hard to come up with ways to describe it, but because it is painful to do so. My son is so beautiful. I love the way he grips my hand. I love to feel his little feet and the way he looks at me with those huge blue eyes. People say he looks like me. He does have my eyebrows.

But I live in never land right now. Not too unlike the storybook land where lost boys remained children forever evading pirates and flirting with mermaids. My son will never grow up. He will never talk. Never crawl. Never walk. Never go to story time at the local library. Never audition for school plays or try out for the football team. He will never tell me jokes. Never bring his first girlfriend home. Never, never, never. Who hid the mermaids on me because this version of never land sucks.

My son is beautiful. And I will have to let him go. Now I know that God can still work a miracle, I am not ruling that out. That would be awesome. It’s just not what I think he is telling me is the road we are going to walk with him. Our road is paved with different miracles. For now I live in limbo. It’s not a pleasant place to live. It is filled with joy that cannot be separated from sadness. The two are married now and I can’t remember what it felt like to be just plain happy. I think it might be a long time before I feel happiness that isn’t tinged with the sadness of this life.

I don’t want to live like this forever. I can’t live like this forever; waiting for my son to die so David and I can begin to put the broken pieces of our lives back together. But wanting to begin that means ending this. Ending this means watching my son die. What kind of mother wants her son to die? I live in a world where I cannot separate my love for having him here with me from my hurt knowing it has to end. Where I can’t begin to heal from the current grief, something I want desperately, to feel normal and happy for a bit, without knowing that wishing for such comes at a terrible price. I suspect that most parents of terminally ill children feel much the same, but I don’t know that. Right now David is the only other person I know going though this.

So many times, no matter how much others try, and we don’t want anyone to stop trying, we are in a place that is, unless you have been there, unreachable. We won’t be here forever but that doesn’t stop it from being searingly painful right now.

Forgive me please if I am short with you, if I give you a blank stare. I am sorry if it feels you are walking on eggshells around me. I hate that it is this way. I don’t know what to tell you I need right now. I know that I may need to talk. Please let me. But please don’t make me talked either. If I tell you I’m “ok” or “fine” please just believe my lie and don’t take it too personally that I just don’t want to talk about it in that moment. It’s just awkward to say to people I feel like crap but I don’t want to talk about it. Fine just seems so much more socially appropriate. I think David and I really just need listeners who don’t ask too much of us right now. If you can avoid it, please don’t ask us to make too many decisions right now. Even small things feel overwhelming. I might need a hug but I might need some space too. I am a private griever and sometimes, though I am generally an affectionate person being hugged when I am not in the right place for it makes me feel trapped and uncomfortable. But if you ask me if I need a hug I will tell you the truth and be grateful that you are willing to give me my space if that is what I need.

I live in a land of “never”s. I serve a God who will never leave me or forsake me. A God who will never let me go. Thank you for understanding.

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