distance (updated)

Thank you so much for your outpouring of support. Every one of your kind words and thoughts reached their way through the box and warmed my ailing heart. Seriously, many thanks for all the virtual love. I needed that.

I still have not spoken with her.

We got the news about my mom on Monday, while she was still under anesthesia from opening her up before they determined that she was inoperable. Since then, she’s been sedated by painkillers for her incision, and all communication has funneled through her husband, my stepfather of 25 years.

As I explained before, my mom hasn’t wanted anyone else there during her procedures. She just wanted to get through them and come out the other side. She was encouraged by her team of doctors to believe that if she could pull through this surgery, she could have quite a decent quality of life after a difficult recovery. She just wanted to get through it and enjoy what was left.

Now she sits in her hospital room at a world class facility wondering if there’s anything at all this team of experts can do for her. Or whether she will simply wither away and die an uncomfortable death while slowly losing her dignity. And find a way to come to peace, to heal her heart, if possible.

And she’s not ready to talk about it.

It has been really hard knowing how difficult this must be for her. To have lost hope. Yet she doesn’t have the energy, the will, or the desire to speak with her loved ones with what she is facing.

Since she was diagnosed just weeks before Baby J was born, I’ve spoken with my mom about every other day, sometimes every day. Although miles separated us, we were as close as we could be. She was reluctant at first to be candid about her illness with us, afraid that she would somehow damper the excitement of anticipating the birth of our maybe baby. But we made it clear that we wanted to know everything. I reminded her how upset we all were when my grandmother hid her disease from us, and she agreed. We said we would do whatever we could to support her.

After Baby J was born, every conversation began and ended with the latest things the baby was doing. The most wonderful diversion. My mom was crushed when she couldn’t meet her sooner and had to wait until after another round of tests. Once she was diagnosed with a course of treatment, we offered to travel to be with her. But with a new baby, travel would be a challenge and she knew that. Our offers to visit were declined. But so too were everyone else’s. It wasn’t just me. Family and friends all offered to be with her, to surround and support her.

She wanted to face this alone, with her husband and no one else by her side.

This is a hard thing to explain about my mother. It’s not simple stoicism. It’s partly her need to feel in control (and she was not). It’s partly her need to not appear weak and vulnerable, to not be afraid (but she was). It’s partly her need to feel like a hostess and entertain her guests (but she could not). I think it’s partly that she can not bear to look her children in the eyes and know that she is the one who now needs care. It’s her need to not be mother or sister or friend, but to be just a patient. Even her husband said he would rather wait alone than have others fussing around him.

I’ve had to respect their decision.

But still.

It adds a whole other dimension to my grieving process.

Ever since May, when I first heard the word “cancer” from her, I have been more or less holding my own feelings at bay too. Trying to protect my heart, I suppose. Distracting myself with the hope of a new baby and K’s needs. That day, I was driving home with my headset on; I had been waiting for the call. She was still very hopeful, though a long road was ahead. My first reaction when I hung up was “fuck.” I actually screamed it. The tears came and flowed. I had been there before. I knew where this road leads. Since then the bad news has just kept on coming.

Hope has been had and lost.

It’s one thing to hear the words. It’s another thing to speak them aloud (or write them down). It’s another thing altogether to understand and accept in your heart their irrefutable truth.

Grief has the capacity to pull people together. If you allow it.

It’s times like this that I sort of wish I had a larger family, a closer family, one that is not separated by mere miles alone. Instead we connect by phone, by email, or not at all. Where once I was the glue, the mediator, the peacekeeper, I am no longer able to serve that role. While I will plan a visit as soon as she allows it, right now I can’t even go cook her a meal, or give her a hug.

We are all being kept at a distance.

I have to abide in my own way.

I am helpless.

~~~~

Update. After posting this Thursday night, I spoke with my mom Friday morning. She sounded tired and weak, but I was happy to hear her voice and to know that she wanted to reach out. Since then, I’ve spoken with her twice more and also connected with both of my brothers and other family members. My local family has been great; it’s just been hard to connect with the others who are 1000, 3000 and 5000 miles away.

It looks like there is one more procedure they hope to try in an effort to relieve some of her symptoms and make her more comfortable. This is not an attempt to cure the disease as it is incurable. It is a risky procedure that she consented to only after accepting that it is her only available option. The doctors won’t perform this procedure for another week, as they hope she might regain some strength from her last operation a week ago.

At this point, the best we can hope for is that she will be strong enough to withstand the procedure on Monday, that it goes well and offers some relief for some quality of life. We have to hope that her heart and liver don’t give out first. We have to hope that she makes it home, so we can plan a visit when and where she is more comfortable, as soon as possible.

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~ by luna on November 12, 2009.

34 Responses to “distance (updated)”

  1. I’m so sorry, Luna.

  2. As you’re abiding with your mother the best that you can, we’re all abiding with you, Luna, and also wishing that there was something more that we could all do.

  3. I’m really so sorry. I did the same thing when Maddy died — stopped talking to everyone, including family. For about two months. I couldn’t pick up the phone or email or anything. And I’m sure it just about killed them, but thankfully they were extremely patient. Also? They still talked to *me*. They sent me messages, but ones that never demanded a response so I wouldn’t feel obligated to reciprocate until I was ready. I’m wondering if you can do the same — simply send messages to the hospital, through your stepfather, telling her how crushed you are, how much you love her, and that you’re there when she’s ready. Having people simply tell me “I love you, I”m thinking of you” got me through even when I couldn’t say it back, yet.

    Again, I’m really sorry. Grief is never easy, is it.

  4. {hugs}

  5. I understand where you are coming from. It is difficult being separated by distance. It is even more difficult when the family member has a lot of pride and will not accept help.

    Take things day by day, and I am sure you will keep her in your thoughts. Wishing I could do more for you.

  6. I live at a distance from my family too, & it’s especially hard when people are sick or dying, & I can’t be there. I’ve had to miss umpteen family funerals because I just don’t have the time or the money to fly home for every one, but I miss having that kind of closure & feeling part of a larger family group at a sad time. And I know I sometimes don’t get “told” things, because people don’t want to “worry” me.

    It’s tough. I’m sorry.

  7. I have a speech about the choices we make, and how we cope with things, but this isn’t the time.

    I’m sorry Luna. Sorry that you have to spend any time at all in this place.

  8. I am glad you can use this blog as an outlet. My heart breaks for you. I cannot imagine experiencing so much joy and so much sorrow in less than one year’s time. I hope that soon your mom will want to gather her family around her and enjoy all of you to the fullest. I hope more than that, that her condition will improve despite what the doctors say. I’m just so sorry for you and your family.

  9. I am really sorry about your mom’s prognosis and hope that they can find an alternative treatment.

  10. I’m so sorry that this is happening. When my friend was suffering from a disease she put everyone at a distance and wouldn’t speak to anyone. What I did is grab a big yellow legal pad and write down all the things I wanted to say to her. Sometimes on the same page I would say how angry I was with her and how much I loved her. I asked questions that I never thought to ask before the spectre of losing her came up. I was fortunate that I didn’t lose her, and I brought the pad with me when I visited her. I told her about it, and I read somethings off of it to her.

    It helped for me, a little.

  11. I am very sorry to hear about your mother and wish I had some fantastic words of wisdom to offer that would make everything better. In the blogging world, that’s what we are left with, words. Words of comfort, support, and friendship, but often being in the commenting position, I feel helpless to really make a difference when someone is hurting. The words just don’t seem enough. Please know that I am thinking of you and sending out thoughts of comfort and peace during this difficult time.

    (I’ve been reading your blog for sometime. I formerly wrote Waiting on Life and Waiting on Life Part II. As an adoptive mother, thank you for writing a truly thoughtful and heartfelt blog.)

  12. Oh, Luna.

    My family was scattered (physically and emotionally) when my mother became ill. The doctor told us the bad news while she was still on the table. Despite her front of confidence (to protect us), her first words upon waking were “Is it cancer?”

    And somehow, we couldn’t talk about it. Not with her. Not til the very end. I was just thinking about this today, when I heard a song that reminded me of that time, how much it hurt not to be able to really be present in that way.

    Oh, Luna. That helplessness is brutal. I hope it helps to know that you are not alone. I will abide. We will abide with you. And I’m always here to listen.

  13. Oh sweetie, that is so hard. My heart is with you right now. It’s so hard to respect her needs, give her her needs, but also take care of your own heart, your own needs in the process when everything conflicts. Is there anything all of us can do for you while you wait? Would it help to talk about her?

  14. This is so hard. Part of me says fuck it, go anyway, despite her protests because as a mom she is protecting you from seeing her this way, knowing that it will cost you something … in a way. But you also get something as well. But you are torn right now between being where you need to be with Baby J and not being asked to come to their side. I understand why you respect their decision. Because it is their right to have things the way they want them. As my friend said once to me, just because she has cancer doesn’t mean she’s has to be any other way than who she is.

    To be helpless, despite every medical intervention, and know that your mum is suffering, is a terrible burden to bear. And one fixer/peacemaker in the family to another, you always feel that you’re the one to fix things. Somehow you can ride in and save the day. This time, you can’t. I have every faith, every faith, that you will KNOW what to do WHEN you need to do it.
    Much love, much love.

  15. I am so sorry. *hugs* I don’t know what to say, I know if it was my mom I’d be tempted to say to hell with it and go out there anyway. To be by her side and show her that she didn’t have to protect me that I desperately wanted to be there with her and help her any way I could. But I can see wanting to honor their wishes. I’d just ask if I could just go and sit with her, no fussing, just keep her company. And hope she said yes. Good luck, we’re all here for you. *hugs again*

  16. I’m so sorry. I can’t imagine how difficult this is to know what is ahead and want to respect her wishes but yet you still want to spend time with her and not be able to. I hope that soon things will calm down some and that you can be a comfort to each other. Hugs to you and to your mom.

  17. Feeling your loss and grief and frustration and sadness, and oh how I wish I could help in some way. Sending you enormous hugs. Please lean on us when you need to.

  18. Luna, I’m so sorry this is happening to you and your family. Know that you are in my thoughts, and that I am hopeful you all will be able to find more comfort soon. Take good care of yourself.

  19. I’m so sorry your family is going through such pain.

  20. I don’t know what to say because I’ve never been where you are, but it’s a hard hard thing to do what she wants/needs and what you want/need, all at the same time. I understand her need to handle this her own way, and really, when it comes down to it, this is all about what she wants right now, but that doesn’t make it any easier on you when you have different needs for dealing with it. It’s all just very tough, and a really shitty thing to have to go through.

  21. Just go. If you can, go visit your mom. What if she dies before she thinks she will? Will you regret it? I’m saying this as someone who had a friend with cancer who died before I ever expected him to. I didn’t realize how serious it was because he kept if from me. He was dead within a year of being diagnosed with cancer. I never got to see him. Just go. I see moms on planes traveling alone with their babies all the time. You can’t do anything about your mom’s cancer, but you can be there for her, if anything, just to hold her hand.

    My mom got sick recently. Not nearly as sick as your mom. She told us all not to bother to go, but we all went anyway, most of my brothers and sisters, at different times. My parents did appreciate all our help. They are proud, and they do not want to admit that they needed help, but sometimes, you just have to ignore your parents and go to them!

  22. My heart hurts for you. My family is like that, although we’re not very close, and I cannot imagine. My heart hurts so much. I’m just so sorry, luna.

  23. If I had a magic wand, or words that would provide actual comfort, I’d surely do both. But I know neither exist.

    Instead, I will just say that your family is in my heart, thoughts, and prayers.

  24. I am so sorry. The distance, geographically, is so difficult. When my grandmother was dying, I couldn’t afford to travel twice, so I had to choose whether I’d visit her at the hospital to say goodbye or attend her funeral. I knew I couldn’t do both, so I waited and came for her funeral. It sucked. Although I called her and spoke with her on the phone before she died, I still wish I’d thought to send her something. A care package. It would have helped me feel like I “did something” for her. The thought didn’t come ’til after her death — but perhaps this is an idea you could use with your mom.

    Huge hugs, Luna.

  25. Sending love to you and prayers for comfort and peace to your mom.

  26. I’m happy to hear that you talked to her. Does your dad have a laptop? Maybe you could make a video of you, hubby and Baby J – I bet you she’d love to watch that.

  27. Oh Luna, I’m so sorry. I hope you find a way to get out to her soon. Part of me (in my bullheaded interfering way) wonders if, sometime soon, you should just take matters into your own hands and bring her grandbaby to her anyway. Obviously I don’t know the answer–I don’t even have that kind of relationship with anyone. But it hurts to see you hurting and alone, and it bothers me to see her self-imposed distance from the thing that’s going to bring her the most joy.

    Hang tight, Luna. If life has taught you anything over the years, it’s that you can handle this, too. (FWIW, I think you’re amazing.)

  28. You and your mother and family are in my thoughts and prayers…

  29. Thinking of you and your mom. Sometimes, it feels like life just can’t let us *be* for a minute, doesn’t it?

  30. Hey Luna

    I’m very sad reading this post and the last one. It must be heavy times. I hope you are able to be with her. You have a lot to teach us all about acceptance. I hope you are able to stand by your mum and support her to face her future without fear and with peace.

    love Barb

  31. Just wanted to let you know that I am thinking of you and your family.

  32. I’m so sorry about your mom. You have such amazing strength. I found my way to your blog through links from other blogs and read the whole thing from start to current, like a novel. I was so moved by your story and found inspiration in your journey. Light seemed to come into your voice as things progressed and your dream was realized. The tone was so different that I actually started to think that your photo of sunrise (sunset?) was becoming brighter, as though the sun were rising.

    It has inspired me to enter the blogging world. I am going through a very different kind of challenge, but I relate to your theme of loss and perseverance. Writing has always been cathartic for me and I can tell how much it helped you to write and have a community of support. Thanks for sharing your story.

  33. […] Thank you all again for your support these past few weeks. I posted an update to my last post (at the end), but I just haven’t had the time, energy or chance to write much […]

  34. […] spent Thanksgiving in a hospital far from home. She didn’t want anyone around, kept everyone at a distance. Not long after that she was told — after pressing her doctor for his best guess as to her […]

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