One day you finally knew what you had to do, and began,
though the voices around you kept shouting their bad advice,
though the whole house began to tremble.
and you felt the old tug at your ankles.
"Mend my life!" each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried with its stiff fingers
at the very foundations, though their melancholy was terrible.
It was already late enough, and a wild night,
and the road full of fallen branches and stones.
But little by little, as you left their voices behind,
the stars began to burn through the sheets of clouds,
and there was a new voice which you slowly recognized as your own,
that kept you company as you strode deeper and deeper into the world,
determined to do the only thing you could do, determined to save
the only life you could save.
that sense of awakening. There is a gentle
rage simmering inside her, and it is getting
stronger by the day. She will hold it close
to her - she will nurture it and let it grow.
She won't let anyone take it away from her.
It is her rocket fuel and finally, she is
going places. She can feel it down to her
very core - this is her time. She will not
only climb mountains - she will
move them too.
Maybe it's the fact that I feel pretty raw and unwanted at the moment, but it just reiterated to me how I don't fit in here in Northern Indiana either. The only people who have ever accepted me for who I am all seem to live in Indy. John comforts me and says he accepts me for who I am no matter what, but that's not true. There have always been aspects of me that he won't accept, characteristics that he loudly trash-talks, criticizes and ridicules, knowing they are mine as well but not respecting because he doesn't agree with them. It's very similar to what Dad does, just on the opposite end of things.
Too liberal, too democratic, too religious, not religious enough, not Christian enough, too gay, too straight, too outspoken, too intimidated, too independant, too weak, too country girl, too city girl, too, small-towned, too sheltered, too accepting, too settled, too irrational, too flippant, too passive, too emotional, too detached, too traditional, too scared, too 'other.'
So what are these? These are all me. And no matter what, I am not enough. I'm not even sure why I care; too attached, I guess. I feel like no matter what I do, I'm already filling out a list of things I regret. I regret not moving forward with the adoption and becoming a mother. I regret staying in the same job for over a decade when I don't like it but feel like I can't afford to move on, I regret not being more brave and going after my dreams but at the same time if I do that, I will be soley responsible for tearing our household apart and putting even more financial and emotional strain on our marriage because John won't ever go with me.
I am stuck. I am drowning. I don't know where I belong, but I know it's not where I've come from and it's not here. How do I get there? And will I even bother or am I just too scared?
We made the decision last fall to stop preparing and to just stop everything until after the holidays. The sense of relief I felt after that was huge; a weight was lifted that I didn't know was there. And I know John felt the same way. I'm not sure what that says. I'm terrified to put voice to that, for a cluster of emotional reasons. And now that it's time to pick it back up, neither of us are really motivated to do so.
At this point I'm not even sure I want kids anymore. Let me rephrase that; I know I still want kids, but I'm no longer sure if I should. I've lived this long on my own, doing my own thing, having my quiet time and I have my routines. My solitude is a big part of that and a big part of my mental health (would it need to be if I had a child?). I'm now 36. No, that's not too old to have a child, but it is getting up there. Then again, I'm 36 - I'm getting close to the cutoff time for adoption so if we're going to do this, we need to do it now because we won't be able to later on.
Part of me thinks that I'll always regret giving up on this dream and I worry about what it will do to me and John. I think of all the things I want to do with my child, all the times I've so desperately longed for this, all the happiness I felt when it looked like it was going to happen, and I still want that. But I also have to look at the uniqueness of our situation and all the pain when it was ripped away. Then I see the ways friends struggle with temper tantrums, behavioral issues, losing themselves, having no time for anything not child related, and I find myself thinking, "thank god we don't have kids." Kids drive me crazy now; I don't have the patience for them long term. Sometimes I think I make a much better aunt than I would a mom. I walk through baby/kid departments, see notices from our attorneys, see the motherhood happiness everywhere and think, "I just don't want to DO this anymore."
I've spent this weekend with my mom; the most supportive person I know. And only because she and I had that hard conversation am I able to finally put this into words now and admit that after all this, I may be walking away. After all the money, the time, the tears, the plans, the items we've purchased and that have been purchased for us (we have a full nursery set up and ready, complete except for baby)... I may be walking away from it all.
Pain changes a person. Dreams change and evolve over time. Letting go is not the same as giving up. But I'm paralyzed with indecision. Look how far we've come. I've been holding on so desperately and for so long my fingers are bloodied. Shouldn't I continue to climb that mountain, despite the treacherous areas ahead? If I let go, will I fly or will I fall?
My aunt Oma has ALS. We've known for a few years that she had something going on, but the doctors didn't know what it was because of the way the disease came on. But as of almost a year ago, they knew for certain that she has sudden onset ALS. I'm going to see my aunt for the first time since her diagnosis this weekend. I truly don't know what to expect.
I admit I didn't know much about this disease before her diagnosis. I had heard of Stephen Hawking, of course, and knew he has ALS and has had it since the 70's, but that didn't really give me much to go on. The summary of the disease is thus: something in the brain suddenly stops the muscles from receiving nutrients, therefore causing the muscles in the body to atrophy. Your mind stays fine so you are perfectly aware of what's happening while your body wastes away and gradually stops working as you attempt to go about your somewhat normal life. The life expectancy after diagnosis is on average three to five years. Five years of life until the disease has ravaged your body to the point of death. Think about that. Five years. That passes in the blink of an eye. I have learned that Stephen Hawking is the rare exception and not the norm. ALS is a death sentence.
Unfortunately for my aunt, she had had symptoms for about two years before she was diagnosed. Not that an earlier diagnosis would have changed anything, except to give her more time to adapt to the knowledge that her life would end before she saw her late 50's. The onset of her ALS was unusual; attacking only one limb instead of a lateral onset. She had a few symptoms but not enough to make it a concrete idea in her specialists mind – until the day came when she suddenly lost mobility in her other hand. It started in the fingers; pinky, ring, middle, index to thumb. Then it moved up her arm until all she could do was shrug. Soon, she couldn't even do that. She's now declining rapidly. I saw a video of her tonight and was surprised to see she's already in a wheelchair. I don't know when that happened. It was expected by the end of the year, but not by the end of summer. Things are moving quickly and it's out of our control to slow it down.
I hate feeling helpless. There's absolutely nothing I can do. There's nothing my aunt can do for herself except prepare for her inevitable death. Nothing will stop this, nor slow this down. There are no treatments. There is one medication on the market. ONE. It may extend life by a few months, it doesn't really treat the disease but treats the symptoms and it's so expensive that insurance companies often won't pay for it – and for those that do, it's still over $2,500 each month for the patient. The only thing she could do was quit her job (after working for so long – and falling at work – that she was forced to quit because she had become a liability to her company), go on disability (which they push through the system if you have ALS... yay?) and now she's spending as much time with her loved ones as possible while my uncle balances taking so much time off work and actually keeping his job.
It's so hard for my mom. My aunt and my mom have the stereotypical sister relationship that everyone wishes for; they are so close and do so many things together. They keep each other sane. My mom is a nurse; it's her calling to take care of people and make them better. She's proactive to a fault and to see her struggle to accept the fact that there's nothing she can do to fix this is terrible. My mom is the ADON of a nursing home; for that very reason, my aunt is planning to live out the rest of her life there once she is bed-ridden, so she can at least be with her sister a little bit each day. My mom is going to be my aunts main caregiver until she dies. I don't know what's going to happen to Mom then. She's going to be lost and I don't live close enough to be there as much as she's going to need me (not that she would admit she needs anyone). I suspect she feels the same way as I feel when envisioning the prospect of losing Mom or Dad.
For everyone who has done the ALS ice bucket challenge this summer, I thank you. My aunt won't see a penny of it, but if it can fund the research needed to make a medication that works or to discover some sort of a treatment that ALS patients can have in the future, it's worth it.
The birth father, the man in jail with no job and no way to provide for a child, decided on the last day and in the literal last hour, to file a paternity suit. The birth mom is going to talk to him this weekend in an attempt to feel him out to see if he's just being a douche bag out of spite or if he's serious.
Joel Kirsh seems to think he's being spiteful but has no intention of backing down. He's warned us that this situation will most likely fall through. We're being waylaid by douchebaggery. We should know more by Tuesday.
The staff at Kirsh & Kirsh have been wonderful through all this. Joel, one of the two brothers who runs the firm, called me personally to discuss the possibilities and our options. Our options are not good. I spoke to his wife, Jacque, who told me not to worry, that this could just be a speedbump. This is a big damn speedbump.
So close. We're so damn close.
This has been a seriously crappy year.