When Rain Hurts by Mary Evelyn Greene

December 3, 2010

December 3, 2010


Peter and his cousin Ethan, 4 (Blowing Rock, NC, Thanksgiving 2010)

December 3, 2010.  I’ve chosen not to write lately because I don’t know how or whether to put into words the events of the last few weeks.  The good news is that our lives are back to normal again, at least relatively.  The bad news is that Pat and I, and perhaps even the kids, glimpsed a reality regarding Peter’s future that we had never allowed ourselves to consider before.  To put it bluntly, Peter fell off the sanity wagon for a few days, without warning, precursor, or any other obvious explanation.  It was the scariest experience of my life, and it’s left me a little shell-shocked.  I don’t want to rehash the details, the particulars of those few days that are now branded into the consciousness of our lives, and so I won’t.  But I will describe some of how the incident has left me feeling.  Suffice it to say there was a break, a sudden, catapulting crack in the fragile chemical balance that is our son’s brain, his personality, his heart, his very identity.  Fortunately, it lasted only a few days because with the help of some pharmaceutical intervention, bam!  He was back.  A little dazed, a little more confused, but he was with us.  All of this happened the week before Thanksgiving, a time when I’m usually preparing for our annual 12-hour road trip to Blowing Rock, NC, where my family gathers for the holiday.  We weren’t sure we’d be able to go, because stabilizing Peter, and keeping him stable, was our main priority, but his recovery was faster than his descent, which is remarkable.  We aren’t quite clear about what happened – and we’re still waiting on some test results, but his psychiatrist thinks he experienced a manic episode.  I know my siblings were worried about our coming for Thanksgiving, for Peter, and for themselves.  The news that his psychiatrist cleared him for the trip – she actually thought it would be restorative for us to proceed as originally planned, was received ambivalently.  It seems that no one, not even my family, wants to insert his or herself into the maelstrom of a mental health crisis.  “What if something happens?  We want to see you, you know that, but are you sure he’s okay now?”  I deflected these and other concerns, raised over the telephone lines, with as much grace and confidence as I could manage, all the while holding my breath when it was my turn to listen so that my agitation, the hurt and growing sadness, would remain concealed.  How lonely I felt in those awkward moments as I clung to the promise and hope of family reunion while all the while defusing the doubt, maybe even dread, I was hearing on the other line.  Lately I’ve been feeling like I’m in a rowboat, drifting steadily toward the open ocean, without benefit of rudder or oar, helpless to do anything but watch the throngs of happy, oblivious beachgoers as they inevitably fade from view.  I used to be one of those carefree beachgoers, with nothing more to tow, on any given day, than the normal dose of angst and anxiety, but now I have to wrestle my way toward every lighthearted moment and orchestrate, even carefully construct, our family’s every move.  Peter’s problems, and Sophie’s too, have a way of pulling Pat and me, slowly but surely, ever further from the comfort and easy companionship of friends and family.  Our daily lives, aside from attempting to stay solvent, are filled with doctor’s appointments, therapists, psychologists, special education, strict routine, and therapeutic parenting.  While in North Carolina, I caught up on all the comings and goings of my many nieces and nephews, all of whom I cherish.  One is heading to Australia for a college semester abroad, another just got her driver’s license, and a third grew a foot since I saw him last March.  Their lives, as well as all the others, are proceeding more or less according to plan, and with great expectations for their very bright futures.  My children’s lives are proceeding too, with accomplishments that dwarf by comparison even their most accomplished cousins, but their achievements aren’t as obvious, and Pat and I have had to move mountains, always, to further even the smallest progression.  And its taken a toll, a fact never so obvious as when I’m with my siblings, who are immersed in the important and blissfully ordinary business of making sure their kids get into a good college, have nice friends, are well-traveled, and learn to navigate different kinds of social and professional circles.  Theirs is the world in which I grew up, but it’s not the world our children will occupy, nor is it a life to which I’ll ever return, and therein lies the rub.  I don’t know what our children’s futures hold – I don’t allow myself to envision an outcome beyond self-sufficiency, intact self-esteem, and the capacity to give and accept love.  Sophie is an amazing child whose talents could take her to heights she’s not yet imagined but whose skeletons may rattle her confidence and cloud her way.  Peter has a beautiful heart but a damaged brain, and he’s more vulnerable, I realize, than I ever allowed myself to believe.  I hope and pray he never loses his capacity for love; beyond that, his future is too uncertain to speculate.  Maybe the uncertainty is what drives my present melancholy, that and the growing feeling of loneliness that continues to gnaw at me.  I miss my family so much, especially my parents, now long dead, and yet I worry that there may be more than just geographical distance coming between my siblings and me.  Our lives have become so different that I wonder whether we are losing the glue that is our commonality.  Pat knows I’m struggling with this, the unacknowledged gulf that’s growing like a patient tumor due to our difficult circumstances and the isolation which it breeds, and night after night he holds me tight to let me know that he’s there, and that he always will be.  He is single-handedly nurturing my sanity these days and I cherish him for it.  He appreciates as well as I that my siblings can no more understand, for instance, the extent of the trauma we’ve endured with the school district, or why we lack the money to pay our income taxes, than I can presently fathom the freedom that their lifestyles afford.  Despite the fact that my siblings (and a few of their spouses) are high-income lawyers, no one has ever truly offered to help – monetarily or otherwise, with any of our various legal battles, crises, or just the every day challenges of raising two special needs children.  The entire week we were in North Carolina, no one even offered to watch Sophie and Peter one night so Pat and I might take two hours to ourselves and see a movie, something they know we very rarely get to do.  It’s not a message they mean to send, I’m sure of that, but nonetheless, it seems obvious that we’re alone on this journey, the four of us, and absent a catastrophic event, they won’t be assuming a more proactive role.  On the heels of Peter’s’ breakdown, I craved more than ever the companionship of my siblings.  I guess I thought they might hold me, help us plot a roadmap, or ask what they could do to help.  Something, anything, to alleviate the fear and desperation that has taken root inside me.  I was homesick in a way I haven’t felt in years.  But in North Carolina this past week, in the summer home of my childhood, where I always felt safe and supported, I was genuinely lonely.  It’s not their fault, they’ve done nothing wrong.  In truth, and maybe in part because I’m the youngest, I worship, adore, and admire each of them more than they will ever fully appreciate.   I’m just seeing reality a little more clearly these days.  As we prepared to head back home, I had the strange sensation of looking into the window of normal life, my siblings’ lives, and catching only a flickering glimpse of memories formed long ago, back when I naively believed a true heart and sound mind were the only ingredients necessary for building a fulfilling life. Though the camaraderie of shared experiences and common interests – as well as the comfort it offers, permeated the air around me, what I so yearned to grab hold of this Thanksgiving seemed impossibly past my reach, and eons beyond my current circumstances.  Our son’s challenges are not only a cross I have to bear, they’re fixtures in my life with which I clearly still need to come to terms.  I’ve made a lot of progress, but there’s more to go.  My post-Peter life will never again resemble my former life, but its rich in love and purpose all the same.  I have to remember that, and work on new ways of embracing what we have rather than dwell on what we’ve lost, or what will never be.

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22 Comments »

  1. i am going to suggest you share these feelings with each of your siblings. these are people you need in your life. we all do. sibs are the longest with us in life. that’s the sib-ship. they are there before our spouses and children. they live on after our parents. they and you are part of each other. my hope is once they know how much their closeness means to you in all ways, that they can do more about it. from their ends, to love and support you on your journey. if they never know what it feels like for you in the here and now, the very things you wrote about above, then they may further slip away from not knowing your love and faith in them. lindalee.

    Comment by lindalee soderstrom — December 3, 2010 @ 2:43 pm | Reply

    • Lindalee – as always, your advice is right on target. You’re 100% correct, of course, though I am afraid to have the discussion for all kinds of different reasons. I don’t want to put demands on them they’re not ready or able to meet, possibly sending them further away from me than I already feel they are. But I will think on it, and take your words to heart. Thanks again – Mary

      Comment by whenrainhurts — December 4, 2010 @ 1:49 am | Reply

  2. Don’t envy your siblings, they should envy you. You have had the courage and compassion to raise these two very lucky children, a feat that still leaves me in complete awe, and in some respects, has inspired me to fight for custody of my son. In Iraq, I get to go back to a solitary room at the end of the day, I can read a book or watch a movie if I chose… or work on a manuscript. What you and Pat are doing goes well beyond what I may ever endure out here. You are the real heroes.

    Brad

    Comment by Bradley St Paul — December 3, 2010 @ 3:03 pm | Reply

  3. My heart is so very sad for you right now. I understand somewhat the oddity of lifestyle differences, the gap between D’s parents and my own being very wide. I hope my hands will be less full next Thanksgiving and I will very happily keep the kids so you two fabulous people can scratch out some time for a movie. I have thought of Sophie several times and how she very sweetly “ruined” Ethan’s room;).

    Comment by sheils — December 3, 2010 @ 3:13 pm | Reply

  4. Oh, I totally hear you. As a single parent who is now living low-income because I needed to leave my job to be home with my child because of his support needs (and because our finances from the divorce have still not been handled in family court for over 10 years and “the former” spends more on his mortgage payment than what my son and I receive for all of our living expenses), I have found that people tend to shy away rather than pitch in to help out. Friends and family members don’t ever offer to take my son (or me!) out or to chip in with expenses, etc., and it seems that they’d just rather not know that we are heavily relying on the foodbank and therefore cannot provide food for get-togethers. I’ve found that the less I could afford to go out and do things with people, the more people withdrew. It’s an isolating feeling; either raise my son with the types of home-supports he requires, or place him back in care so life can be as “normal” as other folks? Life is a strange thing sometimes

    Comment by Christine — December 3, 2010 @ 3:20 pm | Reply

  5. Mary, I would like to help. Please e-mail me: mash_brooklaw@yahoo.com

    Maria

    Comment by Maria — December 3, 2010 @ 3:28 pm | Reply

  6. I’m going to second Lindalee’s comments. It is possible that distance will force the loss of commonality you fear – I saw that happen with one sister who’s far away and whose child is in a totally different place than mine in both age and needs. However, effort on the part of each of us has fostered a more adult relationship in which we take some support from each other despite the different circumstances. And if nothing else, reaching out when you’re low and talking with someone who can remind you about those dreadful haircuts Mom gave you, or the time you drew on the wall with crayons can lift you a bit.

    Comment by Nan — December 3, 2010 @ 7:20 pm | Reply

  7. Wow. All I can say is wow.

    I know what you mean about family…I have tried explaining, and still get “I think you just feel too guilty to discipline him, that’s all”. Good Lord. Yes, all the specialists I take him to must have missed that. After a time, I just let those relationships go. Frankly, I don’t have the time to nurture them, and don’t have the energy either. I have spoken my peace in the past, either they’re on board or not, and if they’re not, then they can jump over and let someone else aboard.
    I put more energy into friends now, many of whom have adopted kids with issues similar to my son’s. It makes life SO much easier when there is no explaining to do. To have people who understand, care, and actually involve my son and invite him to things! Sometimes you have to carve out your own new “family”.

    Comment by Elizabeth — December 3, 2010 @ 7:39 pm | Reply

  8. This post broke my heart. I hope you feel the love I am sending via this email. You are amazing parents and I continue to be in awe of your perseverence and grace.

    Comment by Amy FitzGerald — December 3, 2010 @ 8:15 pm | Reply

  9. You so eloquently put into words many of the feelings that I have.

    Noah had his own break from sanity earlier this week. It was only for a couple hours, but looking back I know that it was coming off of a two-day manic episode. For two hours he raged and screamed and cried hysterically as he told us he didn’t deserve to live, begging someone to just kill him. He’s seven.

    My family has all but abandoned us. My brother and his wife completely broke off all communication a year ago when he found my blog and read about my frustrations with the lack of interest and support my parents show my children. He still reads my blog, so clearly knows all we go through, yet not once has he expressed even the smallest amount of concern or support, verbal or otherwise.

    The sadness in my heart for the pain my son is experiencing, the fear for his future that has intensified exponentially in the past days, and the incredible loss and disappointment I have in my own family at times feels like more than I can handle.

    I can offer you nothing except a virtual hug and the knowledge that in so many ways I understand what you are going through.

    Comment by Kristine — December 3, 2010 @ 10:59 pm | Reply

  10. I wanted to invite you to read my friend’s blog — her son also struggles with mental health issues and I think you ought to know each other. Her blog is: http://www.kidneysandeyes.com (I know you from the adoption group on linkedin)

    Comment by dawn — December 4, 2010 @ 10:33 am | Reply

  11. Many parents feel the isolation you do. As my friend says “If a child has cancer people hold fund raisers, do the wash, bring meals. If a child has a mental health diagnosis they run.”

    Sometimes it helps to be specific with folks. “If you want to help me could you make dinner once every other week?” To a sister far away “It would really help me if you called once a week so I get some support.”

    Can you get some respite through the mental health consortiums in your state? Is there a support group? Does your state have funds to help like Family First moneys? Or some post adoption money? Taking off some financial pressure helps. Maybe a friend or relative would be happy to take on the task of researching that for you as I am sure you have neither the time nor the energy.

    God bless you for what you do for the children.
    Regina

    Comment by Regina — December 4, 2010 @ 10:55 am | Reply

  12. Mary,
    I’m so sorry. Yes, family and friends often aren’t available when we really need them are they? I’ve accepted this fact years ago. With my little one, so many want to believe she is lying about whoever did what to her. I know her truth. It’s so easy to hide from the realities of kiddos such as ours, when they are living their truth, and no one really seems to care. It is very very painful, and I have spent time crying and raging about to no avail. I handle alone. You are fortunate in your marriage. Pray. It helps.
    Lori

    Comment by Lori — December 4, 2010 @ 12:44 pm | Reply

  13. This is another powerful post, Mary. I’m so very sorry for what you’re going through, what Peter is experiencing and the distance that is growing between you and your family. I’m sorry to say that siblings are not always good at helping and understanding. And the problem doesn’t have to be as serious as yours.

    I’ve endured a difficult business loss–nothing as devastating as what you’re living with every day, but bad enough. My siblings have not been understanding. In truth, they’re almost accusatory…like how dare I put myself out there, take a risk, fall on my face. How dare I. Well I can just live with consequences. They’re not mean, just not willing to try to be supportive. Families often just aren’t the same after parents are gone.

    But every step of progress you make will be your own. And that’s something that makes you (us all) stronger.

    On a positive note, I have a friend whose family literally fell apart. Husband bi-polar. Lost their home. Divorce and a youngest daughter that appears to have inherited Dad’s problems. It’s ripped her apart. Her family has been there in the background when things were at their absolute worst, but never have stepped in to help get the whole matter under control. My friend works two low-paying job, has a small apartment and barely keeps it all together.

    Things became even worse this past Fall for a variety of reasons. My friend hit rock bottom, even had a melt down. She spent a week in a facility trying to get her balance back. Her elderly father, who has done what he can financially, finally has taken her in and her siblings are now involved too. My point is that she had to really hit bottom for them to realize just how bad her situation has been for the past several months. I think now she will actually eventually come through this, something I didn’t think was going to happen.

    So maybe everyone is right that you need to open the eyes of your family to the truly terrible situation that you are going through. You have done nothing wrong. Just the opposite. They need to understand that. Goodness, you haven’t abandoned these kids. You’ve loved them and giving them every bit of love, help and support possible.

    I hope that we get a report from you in the future that indicates that they understand what’s going on and support you, even if it’s just for you to know that they care and have your back.

    In the meantime, you sound focused and strong. I believe you and Pat will continue to weather this, which is maybe what they all believe too and don’t believe that you need their love and care…overtly and verbally.

    Comment by Kendra — December 4, 2010 @ 4:08 pm | Reply

  14. It helps to touch base with each other as well, and know that none of us are alone in spirit.
    (((hugs)))

    Comment by Christine — December 4, 2010 @ 4:24 pm | Reply

  15. Thank you all for your kind words and support. In defense of my family, though, I do have to say they haven’t done anything wrong – I guess I just was hoping for a little more. I don’t want my words to be misconstrued. They are sympathetic, they are wonderful, but they live far away, and their lives are busy and full, and well, that’s all. I just wish they were closer, or might consider visiting more, or offer to help in some way, whether its legal help, financial help, occasional babysitting so we could get a break, something.

    Comment by whenrainhurts — December 4, 2010 @ 6:59 pm | Reply

    • So many conflicting thoughts have run through my head since reading this particular post of yours. While I always have sympathy for you and Pat, and don’t know how you do what you do with such courage, perhaps this remark of yours is a clue to your predicament: “They are sympathetic, they are wonderful, but they live far away…” That’s exactly the point. They live far away. They do not have one iota of the 24/7/365 experience that you have had with Peter from the day he became your own. You have the experience; you have the accumulated knowledge; you know what to do in an emergency. They do not. If Peter’s recent break with reality would be terrifying for you, how much more horrifying would it be for them if it happened while they were caring for him–without a clue of what to do for him? How do they protect him? How do they protect their own children? That is their first responsibility. Family love (an ideal vision, a utopian dream, not a reality) has absolutely nothing to do with it. You couldn’t pay me to be responsible for the very LIFE of a child with such extraordinary needs. Let’s face it: your neighbors have more experience with him than your family does! By placing secret expectations on your family–that they surely know nothing about since you have never expressed them–you are unwittingly placing an unfair burden on them and on your vision of what a family “should” be or “should” do. The “shoulds” will get you into trouble every time. While you have a loving “wish list,” it’s quite possible your family has a quite reasonable “fears” list. No one can be condemned for that. If you would like your family to help, you’ll need to be very clear in your mind exactly what kind of help, and you’ll have to ask them for it. If they do not feel equipped to shoulder the responsibilities you have chosen to bear, you can not blame them for it. But, if anyone in the family is willing to learn, then it’s your responsibility to help them learn. Love will not help them pull it out of thin air any more than your infinite love will magically give Peter the future you might ardently wish for him. As another commenter here said, “Just the idea of brain damage is frightening. It should be no surprise when even our sibs are afraid and just don’t know what to do or how to help.” Those are words of wisdom and understanding.

      Comment by Kathleen — December 6, 2010 @ 6:27 pm | Reply

  16. Hi Mary,
    Our kids really are a test of what “family” means. Just the idea of brain damage is frightening. It should be no surprise when even our sibs are afraid and just don’t know what to do or how to help. For me, a big piece for dealing with my own growing sense of social isolation was to actually open my mouth and speak my needs. Asking for help was not something expected from me, judging from my multitasking “superwoman” facade. [Sometimes superwomen just keep stumbling along in shock, putting one foot in front of the other, and even our nearest and dearest don’t notice our inner overwhelm and exhaustion]. Your sibs may be respecting the brave face you put on daily and afraid to interfere?
    There should be a rule for superwomen: you have to speak out your needs in order to give others permission to help.
    Believe it or not, people feel a need to get permission to help others, and don’t have a clue about how to help.

    Mary, from the bottom of my heart I want to believe that if you ask your sibs for what you need, you’ll receive. You may not get exactly what you want, but at least you’ll have been heard. FASD has taught you lessons beyond the range of your sibs paradigms, but that doesn’t mean that your love can’t find a way to your sibs hearts.

    Ask for the help you need, that’s the way good families become even better families.
    Maybe you’ll get some surprises, but you’ll also know you’ve been seen and heard.

    good luck

    Shirley

    Comment by Shirley Hill — December 4, 2010 @ 7:00 pm | Reply

  17. wow. This post has me in tears. I can only suggest you talk to your family as well. Don’t use distance as an excuse for them – part of my family lives close and the other part is visiting 4/5 a years and we are still mostly left to our devices. Apparently half an hour is too far to drive to visit us more than once when they are in town. We’re lucky to see the relatives that live close once a year – apart from when we visit them. The only way I could get through to them of the hurt they cause is to TALK to them and I feel you need to the same. It’s possible they are waiting for you to tell them what you need from them. It possible they don’t know what to do or say to ‘make it better’. If nothing else, share this post with them, because you have managed to get the feelings down on paper in a way that perhaps words will never do. All the best, Kerrie

    Comment by Kerrie A — December 6, 2010 @ 12:10 am | Reply

  18. Mary, my heart aches for you. I kept checking your blog worried that things had tipped for the worse. I am so sorry to hear that was the case.

    Family doesn’t seem to mean what it used to or maybe it just doesn’t mean what I thought it should. I moved back to my home town before bringing our children home from Russia. My husband is Australian and wanted to be closer to family. We both wanted a loving, caring supportive environment to share with our children. The move was not without cost or consequences to our lives and careers and it seems to be for naught.

    I don’t have the same level of struggles you have with your children but we have struggled with PI issues. My family may have good intentions but their idea of support seems always to take the back seat to all their other priorities and time demands. No one has offered to give us a bit of respite for two weary parents, not even for the span of a movie. No one takes time to know our children or know where they’ve been or what their struggles are today. They may have good intentions but the true heart behind the matter is lacking. I spoke with my older sister just recently pouring out my heart and pain and need for support to she a mother of five grown children. I have finally given up. She is ‘just too busy’ and we are not a priority. So be it.

    I agree with Elizabeth. I believe we have to make our families for ourselves with those who understand, share and care where we are as a family. We have to build the kinds of community we long for by being there for others as we would ask them to be there for us. The loneliness of our lives shouldn’t be this way. I powerfully believe we can make it different, heal our lives as we try to heal and support our children in reaching their full potential. I am working on finding a path out of this lonely existence. I don’t have the answer but the map is starting to become clearer.

    Know that your online community is here in any way we can be for you. We can’t take the place of those nearby but we can support, listen and care.

    May your family heal and your heart be comforted.

    Ronda

    Comment by Ronda — December 6, 2010 @ 2:04 pm | Reply

  19. We’re having chocolate covered Kleenex for dessert on Weds.
    I wish it were “just” your gift with words that floors me so….

    Comment by Jen — December 6, 2010 @ 9:38 pm | Reply

  20. Again, thank you all for your insights, support, rants, and even criticisms. What I set out to do when I began this book project, which has morphed, as you know, into a blog, was present our experience (largely my experience) with as much raw truth and “in the moment” feelings as possible. Are my feelings always correct? YES! Because they are my feelings. Do my emotions at times cloud my rational judgment? Absolutely. But I promised myself, and the readers, whether in book form or blog, that I would be 100% honest, and never candy-coat the ups and downs of our journey. I set out to let others who may be experiencing similar circumstances – whether through international adoption or not – know that tackling, examining, and conveying the feelings that come with the pain as well as the triumphs is validating and important, for all of us. And raising a child like Peter, who is so wonderful in many ways, and yet barely manageable in others, is an incredibly isolating, lonely experience. That is just the truth. If I was convinced of that, all I have to do is read some of your comments. And for a person like me, who is outgoing and loves to be around people, its one of the more difficult aspects of our particular journey. But it is nice to know that there are other folks out there that understand; and conversely, that there are people willing to say, “Wait a minute, buck up. Don’t go and feel too sorry for yourself.” It’s all valuable, and important. As I said, I set out to write this book (blog) to help others. I never dreamed how much it would help me. So again, thank you. And if you’re inclined, please by all means, keep reading. Best – Mary

    Comment by whenrainhurts — December 7, 2010 @ 8:45 am | Reply


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