Wednesday, November 3, 2010

On Strength

I just want to thank everyone again, just for being here and reading, and also for all the incredibly thoughtful and supportive comments over the last several days. I can’t tell you how much it helps for people to remind me of the things I know in my heart, especially when those things are getting overshadowed by the grief—in particular, that Hudson knew every second of her life that she was loved and that I did everything I could ever possibly have done for her, both before she got sick and after. I’ve been suffering through a period where I’ve felt as bad as I have since late summer—and that is hard, because I want so badly to believe that the grief lessens over time (because how can it ever feel as bad as this again?), only to be smacked in the face with the reality that it is entirely non-linear and unpredictable and will be that way forever. Forever. And it’s on those days that hearing from you helps so much.

I want to write today about something I’ve thought a lot about since the first time I invited people in to witness this terrible journey, which, really, was back when I first posted on Facebook about Hudson being seriously ill. Since then, and particularly since I started writing here, so many people have told me how strong they think I am, how brave they think I’ve been, how well they think I’m handling this, that they would have crawled under a rock and never come out. I won’t argue on these points, but I will just say that from my perspective, I don’t feel particularly “strong.” It’s not that I feel weak—I just feel like this is what it is and I’m just going along the best-- no, the only-- way I know how. A Facebook friend posted a quote awhile back that has continued to resonate with me every single day: “You don’t know how strong you can be until being strong is your only choice.” I heard a similar quote in a movie recently, where a character said, “You don’t know what you can do until you have to.”

I remember when my mom was first diagnosed with terminal cancer, I kept saying, “I can’t watch her die. I can’t watch her die.” I just didn’t think I could do it. And yet I did. Not only did I watch her die, but I helped her do it peacefully, helping my dad and sister take care of her for the final weeks of her life, doing things I never dreamed I was capable of: changing her diapers, dressing her sores, giving her suppositories, telling her it was OK to leave us, holding her hand as she took her last breaths. How did I do this? I still wonder the same thing myself. Just like I wonder how I sat through a discussion where I learned that my child would either not survive this illness or would be disabled for life. Or how I sat and watched them disconnect all the machines that were keeping her alive and then held her while she died. Or how I have continued to get out of bed every day for the last six months. I really have no idea how I did all this. How I am doing this. But you just do what you have to do. And that is all that I am doing now. Because it is all I know how to do.

But with that preface, the point I really wanted to make today is that not everyone has to be this “strong.” Hopefully no one I know will ever have to be this “strong” (and I’m using quotation marks because, again, I don’t necessarily think this is strength—it just IS). Hopefully no one I know will ever have to do what I am being forced to do now.

Another message that I hear so often from so many readers is how much our story has changed the way they look at their lives and their relationships with their children—for that, I am incredibly grateful. As I’ve said more times than I can count, the fact that Hudson’s life can continue to have that kind of meaning and that kind of impact on the world is the only thing that brings me any consolation whatsoever. It brings at least an iota of meaning to something that seems otherwise totally meaningless and senseless. But I’ve also worried sometimes when I’ve read comments and private messages that some people feel what seems to me to be guilt. Some of that guilt is just natural, I know, especially that their children are alive while my child is not. I know it is about as impossible for me to tell those people not to feel that kind of guilt as it is impossible for me not to feel resentful and jealous of them at times. It is in our nature. But the last thing I would ever want is for anyone to feel guilty for feeling frustrated or overwhelmed or short-tempered with their children, or for complaining every once in a while. At least, please don’t feel that way because of Hudson and me.

I’m glad that Hudson’s story helps people have some perspective about how they interact with their kids and really, how they live their lives in general. Life is too short and it is very precious. And we should cherish what is. But life is also life. Things that are going on in your life may be hard. Then you may compare it to what’s going on in my life and think what you’re going through is not so hard. But if it’s hard to you, then it is hard. A healthy dose of perspective is great, but it is perspective. And it is relative. If Hudson were here, and I were dealing with the frustrations of potty training and picky eating and regressions in sleep habits and all the other really hard things about raising an independent-minded toddler, I’m quite sure that I would have really hard days, too. And I might complain a little or at least express some frustration. It is only because I’ve had to go through this unimaginable thing that I can look around me and go, “OK, well, the rest of this is really not that hard.” But not everyone has to be this “strong.” It is OK to have a hard day and to feel like it’s a hard day for you. I would never want anyone to downplay real feelings because they feel like they don’t have it as rough as I do.

I guess I am just saying (rather inartfully, I’m afraid) that I don’t want anyone who knows me or who reads here to ever get so caught up in trying to cherish every moment that you forget to actually do it.

Thanks again for the last several days.  I really needed it.


  1. You. are. amazing. Other than that, I am uncharacteristically speechless.
    Big hugs,

  2. What I take away from this whole horrible journey is something different from these things-- although, of course, all of the things that have happened weigh on my day-to-day, too.

    Mostly, what I have seen here is that you have given those who have to live on the outside of this terrible grief a way to support you. I have heard and read many grieving people say that they did just "hide" for a long while. I know that I am always faced with how completely inadequate "I'm sorry" is--- and so after I said it a few times, that is when I just shut up, figuring that the grieving person must be so tired of hearing that. And then, unconsiously, there comes the isolation. You have given me the belief that I can go on saying "I'm sorry" and "I have no idea what to say but I'm still sorry" and that that you are not ever tired of hearing words of support, however repetative they may be. You have given all of us who read this the OK to keep reaching out, keep supporting, keep saying the same things, even when saying words can't change the situation. It's a rare person who could do this, Mandy-- you are a rare person, and the words you put down here are powerful and meaningful and such a living tribute to everything that you would have taught Hudson to become. Hugs from afar.

  3. You are so...selfless...reaching out to let others know it's ok ~ you continue to blow my mind. And I'd say you did it VERY are an incredible writer. The words you put together paint such a poignant picture of what you are going through. Whatever cathartic powers this blog holds for you, I hope it truly helps to pour your heart out to us ~ we're here for you always!

  4. I also believe that you are a very strong woman. From all the post you have written about your precious little Hudson I admire what an amazing mother you were to her.
    One day when you have a minute you should look at the website There are some really amazing talks on there that I think could bring you some great comfort. Once you get on the website search "working through my grief." Another mother talks about how she handled the death of her child and how she found comfort.
    I have had to deal with some hard trials in my life also, a lot of death in my family, and it has been hard. I lost my mom to cancer too and two of my siblings. It has been a few years, but I feel like I am just dealing with the grief now. I don't know what your religious views are, but I do know that having faith in something can bring so much comfort. I think of you often, and I pray for you and your family to find strength and happiness.

  5. What a beautiful post. Thank you.

  6. You don't know me but I have been reading along since about July. You are an incredibly gracious person and you have a gift with words. Thank you for sharing Hudson with us.

  7. beautiful and artful...
    and such a wonderful tribute to being, just being, wherever we are and doing the very best we can in that moment. thank you. and love and Light to you as you continue your journey.

  8. I hated being told I was strong, because as you said you don't really have a choice in the matter. You just do what you have to do and wish you didn't have to be strong.

    Even with perspective, I have days when a temper tantrum and no nap on top of no sleep feels hard. I know it is better than the alternative—no one here to have the tantrum and skip the nap and keep me up at night—but in the moment it is exhausting. After my baby died, I gave myself permission to have bad days, not bad grieving days, just run-of-the-mill bad days. And I do.

    As for grief getting "better" with time, I think it does in some ways. It will continue to smack you down, and you will be amazed sometimes at how strong and how raw it can be, but I've found that those moments when I can barely breathe when I feel like I'm drowning it, those moments come less frequently now. They still come, but not nearly so often.

  9. I am so blessed to hear from you today. You are an amazing mom and an amazing woman. Thank you for sharing what is on your heart -- it would have to be (in a way) infinitely easier to pull the covers over your head. Instead you are articulating what is the most difficult thing a mom can write about. As I read what you have written, I am reminded about what you wrote way back in the beginning of your blog -- I think it had something to do with 'enlightenment' ---I will have to go back and check. Anyway, you wrote that as you received info from the docs in the PICU, you took and dealt with what was right there in front of you at the time, and only when that had been dealt with, did you move on and take on the next thing to deal with (do I have that right?). Mandy, I commend you. At a time when it is so impossible to dig down and find the strength to move forward, you have down the impossible -- the digging and finding. Bless you, and praying for your burden to be lightened. Mariann

  10. Wow. I started to draft a comment yesterday that started with "You are an incredibly strong woman" but ended up deleting it after thinking about whether reminding you of your strength was creating too much pressure to be strong on a day when you just didn't want to be. It's a fascinating aspect of the human condition that we summon up the power to face those situations we should never ever have to face. You handle yourself with grace and perspective and humility (as evidinced by last night's post) and, when you have to, with a super human strength.
    Emma will be 17 months old next week. Every single day she does something that brings me right back to Hudson - every day, several times a day. It's both agonizing and heartwarming and it nearly bowls me over every time. Lots of love to you and Ed.

  11. You amaze me...thank you for this post. You have no idea the encouragement it gives me to continue "living in the moment". I don't have any incredibly frustrating times with my child; however, I miss her more when we are apart. Working this wonderful new job gives me less time with her. So much so that she has learned to say "bye bye mommy, have a good day". It's cute, but it breaks me a little because all I want is to nuzzle next to her and draw an income from doing it.

  12. I had a recent conversation with a dear friend of mine whose second son died less than an hour after birth in the beginning of the 3rd trimester. It has been 3 years, and her third child's birth (and 2nd birthday) since his death. We were talking about what he would say to her now. And, she said he would say 'thank you for loving me so much.' She said that whenever the pain becomes too much for her, she thinks of it as love and focuses on his face and continuing to love him. Painful, yes, but pain refocused in a positive way. And, pain that reinforces the positive and wonderful things of his all-too-short life. It is my deepest hope for you that you can focus on how much you love Hudson and let that love wash over you and wash away feelings of worrying about what else you could have done. Loving our children, that is the greatest gift we can give them. And, you. are. love.

  13. I definitely think of you and Hudson when I am sharing moments with my son. Just last night as we were playing cars and I was able to sit back and let him play on his own after getting him started I just watched his face. I loved watching his facial expressions change, his little hands grip the cars, the sounds he made as he pretended to fill up the cars with gas. And I am counting my blessings in those quiet moments, wishing you could be doing the same thing with Hudson and looking forward to the day when you will have those moments back again.

    But I have also thought that you can't spend too much time worrying about what might happen and has happened and miss out on what is going on right in front of you. It is a fine balance of quiet reflection to appreciate your blessings but also showing your appreciation by living life as it is handed to you. Thank you for this reminder.

    I have read your blog posts over the last several days and have just been trying to think about what I could say that is different than what I have said before or what others have said, what I could say that might possibly bring you a modicum of peace on an otherwise awful day. And I hadn't yet been able to think of anything that seemed right. But I DO think you are an amazing mother. I know Hudson knew and felt your love for every second of her life. Your ignorance and innocence during her last hours of consciousness helped her to feel peaceful and not be scared of being sick and in a hospital because you were confident that everything would be fine. She took her cues from you and I know you did your best every day of her life to be exactly what she needed you to be, even on that day when it all went to hell. You spent the majority of her last conscious hours holding her in your arms. That's all she needed to feel safe and loved, and so she did. Try not to let the tragedy of her death and your grief overshadow the joy and love of her life.

  14. I just wanted to respond to a post you wrote several weeks ago about dealing with grief while pregnant and worrying that that would have adverse affects on the baby. I want to assure you, as you already know, that life is too complicated for that kind of easy cause and effect relationship. I had some bouts of severe anxiety, panic attacks, insomnia, during my last pregnancy and our baby is the sunniest smiliest guy in the world. I was totally fine in the previous pregnancy and that little boy is moody and melancholy and seems to understand the world's grief. You just take care of yourself the best you can and by doing that you're doing everything you can to take care of the being growing inside you. You're doing good, you're making your way through it and you are going to continue to be an amazing mom!

  15. Mandy: YOU WROTE: 'You don't know how strong you can be until being strong is your only choice.' 'You don't know what you can do until you have to.'

    Brings to mind, a line from the character of Olympia Dukakis in STEEL MAGNOLIAS: 'That which does not kill us, makes us stronger.'

    You are a 'steel magnolia.' (((((hugs)))))

  16. Mandy, as it seems appropriate today, I want to know that something else I've taken away from this terrible tragedy (and as you said at Hudson's memorial service) is that you and Ed did not happen upon this incredible support network by accident or overnight; it was there for you all along because of the kind of people you are, the kind that draw people to you in so many ways, the kind that make and keep connections with people from many different walks of life. This has obviously served you guys immensely in both the good and the awful times. You have made me try harder to establish a community and a network for myself of people who truly care about me and my family, not as insurance in the event of a tragedy (although the thought has certainly crossed my mind that such support would be invaluable if I ever truly needed it) but rather as a way to enrich and add fullness to life on a day-to-day basis.

  17. Mandy: Here is the quote about Enlightenment:

    'Enlightenment is the awareness that you must be and do only exactly what you ae being and doing at this very moment.'

    Just beautiful and what words for everyone to remember and to live by. That quote answers many of the questions you write in the third para of your blog post above. Thank you for sharing. Mariann

  18. I read a story to Dylan before nap each day. He gets to pick out the book. Today he went to our bookshelf and picked this book out. I had just finished reading your post prior to nap time. I thought about you the whole time reading it to him.
    This is my wish for you
    By charles Livingston Snell

    This is my wish for you...
    That the spirit of beauty may continually hover about you and fold you close within the tenderness of her wings.
    That each beautiful and gracious thing in life may be unto you as a symbol of good for your soul's delight.
    That sun-glories
    And star-glories
    Leaf-glories and bark-glories
    And glories that lurk in the grasses of the field
    Glories of mountains
    And oceans
    Of little streams of running waters
    Glories of song
    Of poesy
    Of all the arts
    May be to you as sweet, abiding influences that will illumine your life and make you glad.
    That your soul may be as an alabaster cup, filled to overflowing with the mystical wine of beauty and love.
    That happiness may put her arms around you,
    And wisdom make your soul serene.
    This is my wish for you.

    Mandy- you are an amazing woman, wife, and mother. That you allow us to be a part of your life is a great gift. Thank you for all that you do and all that you are.

  19. Another reader who doesn't know you in real life, wanting to say that your love for Hudson (and Ed's, too) shines through all the time. There's no way to know, of course, but I have to believe that she was aware of it up until the very last second. I'm sorry I didn't say that before, reading along.

    and yes, I think about Hudson very often, even -- sometimes especially -- on the hard days. Sometimes in the midst of washing diapers it strikes me that washing diapers is a privilege, not a right, if that makes any sense.

    (By the way: I suspect you're not around the online community where I first saw you post about Hudson's story much these days, but one mother who lost her baby last year had a healthy girl in mid-October, and two others -- including one with an illness in the family -- are pregnant again, and the ill person seems to be doing pretty well and tracking towards beating it. I hope that's vague enough to protect privacy while still being useful! I suspected you would be happy to hear the good news.)

  20. The writer, Gretchen Rubin, shared a truth about parenting: "The days are long, but the years are short." I remind myself of this daily, and it sustains me through some of those difficult moments.

    My wish and prayer for you is that these long days of grief will ebb and make room for some peace and joy in your life.