When Rain Hurts by Mary Evelyn Greene

February 24, 2011

February 24, 2011


Peter and Pat (Birobidzhan, Russia, Oct. 2004)


February 24, 2011.  I haven’t written in a while, though I’ve started and stopped several times.  Peter’s not well right now, he’s disconnected and confused, and very, very vulnerable.  He’s getting the help he needs, and for that Pat and I are grateful.  He’s not in physical danger and his spirits, all things considered, are good.  It’s a terribly difficult time for us, and though I may one day choose to write about the intense panoply of emotions I’m experiencing, right now I need to honor my son’s dignity, bolster his courage, and attend to the needs of my husband and daughter.

For the present, and after discussions with my agent, I think I’ll return to the task of finishing the remaining book chapters.  Our current circumstances more than ever convince me of the need to get this book finished, to get this book distributed, and to hopefully allow people a window into the lives intimately and forever affected by prenatal alcohol abuse.  The older Peter gets, the more evident it becomes that his obstacles cannot be blamed predominantly on the neglect and possible abuse experienced in his Russian orphanage.  Our son’s brain has forever been altered by the devastating presence of alcohol coursing through his birth mother’s bloodstream throughout the gestational period.  And though she may have inalterably limited his cognitive, emotional and self-regulatory capacities, her reckless behavior did nothing to muffle the gentle beauty of his heart, or the genuine kindness of his soul. He is a beautiful but damaged boy who suffers the double whammy of permanent brain damage and significant early trauma.  I hope this project, if it does nothing more, raises awareness of one of the most devastating yet preventable birth defects:  Fetal Alcohol Spectrum Disorder (also called FAS).

A few weeks ago Sophie, our third grader, related a story she heard in school, about a child whose older brother is in jail because he drove drunk, caused an accident, and killed his best friend in the process.  A horrible tragedy for both families, I wondered what Sophie was thinking.  I was about to ask when she beat me to the punch.  “Mom,” she paused.  “Why isn’t Peter’s mom in jail?”  I looked at her calmly, and asked her to explain her thoughts.  “Well, she ruined Peter’s brain by drinking alcohol when she was pregnant.  I thought people who hurt other people when they are drunk have to go to jail.”

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13 Comments »

  1. ruined, damaged, broken, toxic, prenatal insult, victim of, illness of, disability of………..fetal alcohol is language we try to avoid. i do not want my son, even at 25 years of age, to feel broken, less than or like he is damaged goods. we try to use and reinforce words which keep a positive spin:

    everybody’s different
    we all learn differently
    we are here to help you learn to learn
    we will find the best ways for you when we work together and
    always give your best try and know that is good enough………

    just my lil two cents in the bucket. language really can influence our attitudes and actions. i know you both see and hope for the best in your kiddos mary but we have to teach the whole world abt honesty about what caused fasds with POSITIVE MESSAGES for our little ones. and even for ourselves. sometimes it is better for me to say i am weary than that i am burned out. both are true but the one sounds gentler at times. lindalee

    ps we are all being the best moms and dads we can be. yes we are!!!

    Comment by lindalee soderstrom — February 24, 2011 @ 7:55 pm | Reply

    • I hear where you are coming from, Lindalee, but I didn’t see negativity in her post. I just saw honestly and pain. Mary, I think we’ve all been there. Yes, the positive language is very important — especially in the way we speak to our alcohol-affected children — but there has to be space to express grief, frustration, anger, sadness, fear, and discouragement, too. These are just part of the journey with FASD. I’ve stayed up till 3:15 in the morning reading your blog because it’s one of the first times I’ve felt like I’m connecting with someone who really “gets it.” Thank you so much for opening up your heart and your life. You’re not alone…

      Comment by Jenny — April 14, 2011 @ 6:13 am | Reply

  2. I’m so sorry this is happening. I know how heartbreaking and terrifying it is. The first time our son experienced a psychotic break and had to be hospitalized he was only 10. It was at that point the most terrifying experience of my life. I was afraid that we had lost our little boy forever to a world of psychosis. He did come out of it though and although he has experienced subsequent breaks they are fewer and farther between. He will always have FASD of course and he will also have Bipolar Disorder but after years of medication changes he has been relatively stable for much of the last 8 years. He has his ups and downs but things have never been as bad as they were in those early years. Hopefully this will be true for Peter as well.

    (((Hugs)))
    Errin

    Comment by Errin Weigel — February 24, 2011 @ 7:57 pm | Reply

  3. I was worried that something was up since you had not written lately. My thoughts are with all of you. My heart goes out to you.

    Finish that book, Mary. It will help so many out there; your and Peter’s gift of love.

    “Dear little Sophie” is all I can say. She is so perceptive, so thoughtful.

    Love,
    Kathy

    Comment by Kathleen — February 24, 2011 @ 8:13 pm | Reply

  4. Mary,
    My thoughts, my heart and my prayers are with you, Pat, Peter, and Sophie. I can’t imagine how terribly hard these days must be. I know, though we are not dealing with FASD, I know that Peter’s actions and condition have nothing to do with you as a parent.
    Your book may be the gift that you and Peter give to families dealing with FASD and to professionals seeking to stop it, control its impact, manage it.
    I do hope you are giving yourself some hugs, some good thoughts, and some fun, stress reducing and enyoyable things to do. The world needs you Mary, please take care of yourself.
    Chris

    Comment by hvspecialeducationnetwork — February 24, 2011 @ 9:07 pm | Reply

  5. I will be praying for your family. Sophie is learning some tough lessons at a young age about the world and life. Ultimately she will grow into a sensitive and caring person and may use what she learns to make the world a better place. Hugs…

    Comment by Victoria Campbell — February 24, 2011 @ 9:55 pm | Reply

  6. I am so moved by your story. Yes, the world needs to know, so I can’t wait for your book to come out. Sending all my best, C

    Comment by Christiane Alsop — February 24, 2011 @ 9:58 pm | Reply

  7. Makes me want to cry. Loads of love to you all!!

    Comment by Sheila — February 25, 2011 @ 7:41 am | Reply

  8. My thoughts are with Peter and the rest of your beautiful family as you navigate through this confusing, frustrating and challenging times.
    Blessings.

    Comment by Ani — February 25, 2011 @ 8:34 am | Reply

  9. I’m so sorry… we deal with FASD as well, though much milder, with our son, just a year younger than Peter. I hold you and your family in my heart always, and read everything you write. I hope things will get better soon.

    There is a prayer in the Buddhist tradition called Metta – it varies, but the gist of it is: May you be safe, may you be happy, may you be healthy, may you live with ease. The tradition says that we pray it first for ourselves, then for someone we love, then for someone we may love but find difficult, then for the man on the street, then for all beings. I am praying it for your family, especially your Peter. Much love.

    Comment by Tamara Grant — February 25, 2011 @ 9:22 am | Reply

  10. Mary,

    I am drawn to your candid posts about your life experiences raising your children. I am an adoptive mom of two; one of whom I suspect has FASD (in addition to his autism spectrum disorder), and I have felt the feelings you describe and thought the thoughts you share. Some days, I find that I am able to cope reasonably well. Others – well, I guess I would say I survive, despite a combination of grief and overwhelming exhaustion. And a nagging fear of what the future may hold is with me constantly.

    At one point last summer, I wondered if our family could withstand another day dealing with FASD behaviors. As you know, the challenge is extreme. I am glad to report that things have improved with the help of in-home autism therapists and family counseling, though.

    I hope you are able to access additional resources to help your family with the difficulties you are expriencing. In-home therapy was extremely helpful for us.

    This is your blog – your place to honestly express your thoughts and feelings. This should be a venue where you do not have to put on a great face and act like things are wonderful when they’re clearly not. Your attitude and approach to your reality is just right and completely acceptable just the way it is. Perhaps “genuine” attitude is a better term than “positive” attitude in this situation. I admire your courage and candor, especially because I can relate to your perceptions.

    Stay strong, and never give up hope for better days.

    Comment by Jan — February 25, 2011 @ 7:31 pm | Reply

  11. Hi Mary,
    The fact that you haven’t written in over a month leads me to ask these questions – in this order.

    Are you okay? How is Peter? How is Sophie? How is Patrick? How is the family?

    I know you have been posting from time to time on other topics on Facebook, so I know you haven’t fallen off the face of the earth.

    Please do not take this comment as needing a reply. I’m just expressing my concern for you and yours – which to my ears sounds so trite, but in fact is what I mean.

    Chris

    Comment by Christopher Duncan — April 2, 2011 @ 10:41 pm | Reply

  12. Mary, I regularly check here to see if you’ve posted any new entries, and I hope that you and your family are doing as well as possible. While I don’t have a child with FASD, my son does have bipolar disorder, so we are walking a difficult road as well. I can identify with much of what you write from the perspective of being the (very tired) parent of a child who is hurting and struggling … of not being able to “fix” things even as you move mountains to try to figure out how to help your child live the best life possible.

    Although I’ve been reading your blog for awhile now, I don’t think I’ve ever commented on a post. But one of the earlier comments you received has been troubling me for some time now, and I finally decided to speak up. As someone else said, this is YOUR blog. You are not obligated to paint a rosy, positive picture for anyone if rosy and positive don’t happen to be how you feel. If the words that seem most on-target for you on a given day include “broken” and “burned-out”, then those are the words that you should use in your writing.

    My son is aware that he has bipolar disorder (as well as ADD/HD, anxiety/depression, ODD, and a bit of OCD); he will never be “low maintenance”. He just came home from a stay at a behavioral health hospital … not his first experience there. We, too, are also going through a Due Process battle with our school district that’s costing us an obscene amount of money that we frankly don’t have. But, somehow, you make it happen because not to … well isn’t an option.

    Despite all of that, we certainly don’t paint our son’s life or his issues as a tragedy or an imposition, and we always try to encourage/support his dreams and aspirations and do whatever we can to provide him with the tools he needs to achieve them. He knows that we love him unconditionally.

    However, we also don’t try to “snow” him: He knows that he will always have to struggle with challenges that others don’t face. His “normal” will likely always include meds, and doctors, and mood shifts that he will need to learn to navigate. And, like every other human out there, there will be things that he won’t be able to accomplish even with the most Herculean efforts – and he knows that, as well. I don’t think that it does our son any favors – or that it would do anyone who may be learning about his issues any favors – if I were to try to sugarcoat, or “spin”, what our lives entail. Being supportive and trying to maintain a positive outlook doesn’t mean that you need to suppress the darker moments and emotions. Particularly, in your case, if you are writing in a forum that is not likely to ever be read by your child.

    I’ve learned so much from your posts … about FASD, yes, but also about parenting in the face of adversity, about how to keep going when it seems as though you can’t, about love and the loss of dreams. And I would absolutely not have learned as much, or been as affected by your writing, if you’d stopped to edit yourself from expressing your authentic feelings. Please continue to express yourself without any filters that don’t feel genuine. You are helping so many others out here, and – I suspect – it’s much more of a cathartic approach for you, as well.

    I hope that you’ll check in soon and let your readers know how you and your family are doing. (I do worry when you go a long time between posts!) In the meantime, I anxiously await the publication of your book. And, as always, I wish all of you abundant peace, health, and happiness.

    Comment by Ruth — April 3, 2011 @ 11:08 pm | Reply


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