This, for those of you following at home, is called phoning it in.

I am so exhausted from a weekend visiting in-laws – during which Emilia took up drumming and basketball and other activities more ordinarily associated with teenage boys than preschool girls – and I think that I’m coming down with something and, also, probably suffering from an iron-deficiency and so I’m having real trouble summoning the creative energies to say anything profound or funny or even remotely interesting.

Shown: Hoodlum, Preschool Female v.2.0

So I am, for today, just going to have to direct you elsewhere:

1) I’m not sure, but I think that whoever is writing this blog knows my kid. Hang on: maybe it is my kid. Whichever one of you taught her how to blog, you’re fired.

2) This is me wringing my hands about Bill O’Reilly. Look how much fun I’m having! My joy is almost palpable. NOT.

3) You know how you’re always telling me that I never update you on stuff, like how is my nephew Zachary, the one who was so deathly ill last fall? Well, I don’t need to, because my mother is on top of that. You’ll be interested – or not – to know that he’s well enough to be having teh sex. I’m going to pretend that I didn’t just write that.

3) I didn’t write this, but I wish that I had.

4) Boobs.

That’s all that I’ve got. Sorry.

It’s been four years since my nephew, Tanner, was diagnosed with the condition that will kill him. During that time – which moved slowly at first, the disease not seeming to have taken hold in his little body, until he began growing faster, and it began its ceaseless attack on his muscles, crippling them and consuming them as the rest of his body grew – I never once saw my sister, his mother, cry. I knew that she did cry, of course, when the children weren’t looking, when she didn’t need to maintain a front of fierce composure, but her tears never spilled where anyone could see them. She was scrupulous about that. Tanner needed her to be strong, and so she was strong.

I wasn’t prepared, then, when she broke down in front of me last month, after we’d spent a week at the bedside of her eldest son, Zachary, as he lay hospitalized – tubed and wired and monitored against the infection that was attacking his spinal cord and nervous system – a week that we’d spent clutching hands and holding each other and her patting my back whenever my eyes welled up with tears: it’s okay, Cath, she’d whisper. Here, let me take Jasper if you need to leave the room. She hadn’t cried – although I felt her grief like an electric current, like a surge of energy that lashed out in so many broken wires, snapping and hissing, every time the doctors refused to give a prognosis, every time his father, her ex-husband, called and said that he couldn’t visit until very late, every time he flinched from pain, every time we left his room – she hadn’t cried, until we were many miles away from his bedside, and when the moment came, it surprised me.

I’d accompanied her to her doctor, to get some forms signed that would allow her to take yet another compassionate leave from work, so that she could attend to the business of watching over one sick son – too many miles from home, at the hospital for sick children – while making sure that the other son, the dying son, and the daughter, were cared for. He asked her how she was holding up, she told me as she walked out of his office. He asked her, and she burst into tears. The tears were still streaming down her face.

We were silent as we collapsed Jasper’s stroller and loaded it into the minivan, in the back, where Tanner’s wheelchair sits on the lift that was specially installed so that Chrissie could drive him around, so that he could go to school and to swimming and on errands with his mom, just like a regular boy. She didn’t say another word until we were in the front seats, her keys in the ignition. I feel like I’ve been raped, she said, the tears still streaming. I feel like I’ve been raped and beaten. It hurts that bad. She put her head on the steering wheel.

I told the doctor, sitting at Zach’s bedside, watching him, worrying that he would die, it was too much hurt, she said, not lifting her head. I told him I feel like that this was a dress rehearsal, like I was practicing for sitting by Tanner when the time comes, except that I won’t be hoping he won’t die, like with Zach, I’ll be knowing that he will die, knowing that he won’t leave the hospital, ever.

Her hands gripped the steering wheel, her knuckles white, her head still down as her body shuddered, sobbing. I put my hand on her heaving back; I stroked her long hair. I didn’t say anything. I didn’t have any words for her.

I didn’t have any words for her, because there are no words. There’s no lesson to be pulled from her experience, no philosophy to apply, no narrative that will make things better. This story already has its narrative, and although it’s tempting to impose philosophies and draw lessons – how precious life is, how precious love, how fragile the former, how enduring the latter – these are meaningless against the impending conclusion of this story, the loss that looms not like storm clouds but like a great, gaping black maw, a black hole of nothingness. There is only the inevitable conclusion of this story, and its finality. If it holds a poetry it is a wordless poetry, a song without lyrics that strums the distance between love and loss, light and dark. If it holds this poetry, it is well beyond my grasp to seize it. I can only witness, mute.

I have no words. I have nothing to give to my sister, only love, which is everything, I know, but still – it’s nothing in the face of so much pain. And so we can only march, together, bound by love, bound by pain, struggling with these and against these bonds to wring as much love-beauty-joy from the journey, while it lasts.

I can do one thing with my words, though: I can ask others for help. Chrissie will be running, in a few months, in a marathon to raise money for Duchenne’s research. There’s no cure for Duchenne’s, but there’s always hope, and Chrissie is running, as always, for this hope. With my words, I can cheer her on, and I can ask others to cheer, and to help by cheering and to cheer by helping.

You can donate in Tanner’s name here. It probably won’t change the ending to this story, but it will help the narrative maintain a recurring theme of hope. And that, right now, is all.

(I’m closing comments. Please use whatever energy you might have spent sending your love and good wishes and use it to pass this story along, or, maybe, to click the link and give a dollar or two in Tanner’s name. Thank you, as always. Thank you thank you thank you.)

Zachary has been released from the hospital. He’s still very seriously limited in his mobility – he still needs to learn to walk again, to teach himself some things that his nervous system used to manage automatically – and there are some concerns about permanent damage that are a little distressing, but end of the day, this is really good news. He’s officially out of the darkest part of the woods. He’s home.

And my heart is beating a little easier. A lot easier.

Thank you, all. Thank you thank you thank you. Your good wishes and prayers made all the difference.

I can come home now, please?

I am so tired, so worn out, so spent, so – it feels – cut off and adrift from everything – almost everything – that keeps me sane and happy in everyday life.

And so I just cling tightly to my baby – my one little beacon of joy and light through these dismal days – and wait for tomorrow.

Tomorrow, I’ll be home.

Thank you all so, so much for, you know, everything. I haven’t been able to access all the comments and tweets and messages, but I know that they’re there, and I’ll respond as soon as I can. In the meantime: THANK YOU. It has made all the difference.

Update on Zachary below.

This is going to sound trite, but I’m going to say it anyway: sometimes, on even the darkest day, a little bit of sunshine bursts through a gap in the clouds and that streak of light – even if it does not have the power to warm cold bones and frigid skin – reminds you that there’s blue sky up there somewhere, above and behind and beyond the dark. The smiles of my children – I warned you about the trite – are such bursts of light.

So is this:

Hi Catherine (& well wishers),

I kept up w/ your blog and every single one of your comments on my Beaner and I cannot thank you enough for posting my story and helping me out even though I know that you are going through a lot and I am so sorry if I put you in a position. I say this because I know the hurt you are going through now… but what you did is life changing for me and my kids and I will forever be grateful.

On Friday night I was able to get visitation w/ my two older kids for the weekend. It was the first time I’d been w/ them for more than 2 hours since Beaner was born. It was a great visit and they just adored her. I had originally told them when I was making the adoption plan that Beaner was going to live w/ a family that couldn’t have babies. I thought that was the only way for them to understand…I can honestly say it was a very hard weekend w/ all 3 of them, but I wouldn’t have had any different. We were all finally together, our family…My Family. How could I give her up and take her away from her big brother and sister who were lying nuzzled right next to her giving her so many kisses? Would they ever forgive me for taking her away from them, would she for giving her up? Believe me, there was a moment where all 4 of us were crying at the same time… I know its going to be hard, but you know I want to do it, I have to do it for them…

Everyone one that left a comment, sent prayers and thoughts my way will always be in my thoughts and prayers, as I will be forever grateful.. They gave me A LOT of advice and I read and processed every single one of them over and over…Thank you for sharing personal stories, I know how hard that is and was for some.. I wasn’t strong enough on my own to not get help and opinions from others. Right now I’m taking the adoptive parents backing out, your blog entry about your brother and I’m taking them as a sign…a sign that things are right now because they are supposed to be, that I will learn and grow and put this behind me as a very hard and confusing part of my life…

I can honestly say that this time last week it was at any moment that I was going to sign the adoption papers. I drove by the agency 8 times and visited my caseworker once, but there was not one moment that I could actually make the pen move on the paper…I couldn’t sign…So I’ll take that as another sign…

So, it’s final, a decision is made….I’m keeping my Beaner, she will grow up w/ her big sister (2yrs) Itty Bitty who will lovingly teach her everything she knows…and her big brother (4yrs) Lil Man who will always be there for her and protect her as much as he can… He was such a good big brother this weekend making sure Itty Bitty was gentle w/ Beaner… I am glad to know that adoption as an option was there for me, because I do know that there would have been parents out there willing to love her and take care of her. And it would have been my decision had this mess w/ my parents not happened…but I now believe things happened for a reason… this all happened for a reason…

Things are going to be different…I know they are, its not going to happen overnight…but I will keep believing because I will have my kids…all 3 of my kids. I love them more so much. And I will never give up, I promise them that…I will do everything in my power to make sure they are provided for…I won’t be ashamed to go the welfare office and get the help that I need now to get back up on my feet…I will do this because its too late to do an adoption plan…I love her too much to let her go now…

Thank you HBM, I don’t know if you realize it… but because of you and your help, my family will be forever grateful indebted to you… My prayers and my thoughts are with you finding your brother and that your Nephew Zach will get better…he’s young, and I’m sure a fighter…

Always here,
Marie

PS Attached is a picture of Beaner, so you can meet the little one who this was all about… OH, and, well she needs a name now… I don’t know about you but Beaner C, Attorney at Law doesn’t sound right for her future… So if you wanna ask your readers for any suggestions, I would welcome it… My other kids are names begin w/ M’s, so I would like to find an M name…

I want you all to know this: the greater share of Marie’s thanks is due to you, dear internets, dear friends. I corresponded with her, shared my meager thoughts, and posted her story, but you all did so much more: you shared your own stories, you shared your wisdom, you filled this virtual page with warmth and hope and love and realism and friendship and support. As you have done so often for me. As you continue to do now. For that, all the gratitude in the world is barely enough.

Now, you heard her. She needs a name for a baby girl – her baby girl – a name that begins with M…

(Zachary has not improved. The doctors still don’t know why the strain of meningitis that is attacking him is attacking so aggressively and unreservedly. They think that there is probably something more than meningitis that is waging war on him, but they don’t know what. Zachary continues to fight. I leave for Vancouver tomorrow, to sit with my sister at his bedside and offer all the love that I can.

If you have more prayers and good wishes to spare, I will accept them gratefully.)

********

Update on Beaner:

Hi Catherine,

I wanted to let you know that Little Mia Catherine is doing great! She is 8 weeks old and a great baby, ya I’m a little biased!! I just want to say thank you again, what you did for me was life changing… It opened new doors for me, and I am so happy w/ ALL my kids and her with me! Good news, I found a job…a bigger place to live w/ my friend that will accomodate all of us!! My brother moved down and is babysitting while I work (11pm-7am)…so everything is falling into place!! So anytime you are in NM please hit me up, I owe you a few drinks!! Much love Friend!!

Always,

Marie