When Rain Hurts by Mary Evelyn Greene

May 5, 2010


Next Moves (April 2010)

May 5, 2010.  I learn tonight that my sister and her husband are heading to the Galapagos Islands on Friday.  A bit of a last minute trip, she tells me.  I’d be lying if I said I wasn’t jealous.  Those kinds of adventures are completely outside the realm of possibility for us, now and forever.  But I do wish them a safe and exciting journey.  Looking through the reams of photos once they return hopefully will help quell my unfulfilled wanderlust.  Lots of people my age are anchored right now to home, soccer games, and dance recitals, there’s nothing unusual about that, we have young children after all, it’s just that Pat and I may never again have an indulgent moment together, let alone an outright adventure.  Our son is a permanent child and my husband turns 62 in June.  They say kids with FAS are emotionally and socially half their chronological ages.  With luck, that means Peter should have the maturity of a 15 year old by the time he’s 30, about 21 years from now.  Too soon to leave him for the Galapagos, though, even if Pat at 83 was still game for the adventure (and we had a penny to spare between us).  But that’s all right.  I won’t despair.  We gambled our futures on two orphans from Russia and now it seems the entire rest of our lives are meant to be about loving, caring for, and where possible, healing them.  And that’s not such a bad thing.  If I look back at the end of my years and am able to say I’ve done the best by our children that I possibly could, then I believe my life will have had meaning, that my parenting efforts will have been successful.  Heavy thoughts for an uneventful hump day, but some nonsense going around a local online group of parents that I belong to has me thinking about what really matters, and what frankly doesn’t.  Around the start of the CPS phase in our lives, I naively sought support, even action, from these online folks, many of whom I know personally.  They live in our town and their kids attend Peter’s school.  But instead of an outpouring of outrage, letter writing, and peaceful protesting in response to our plight, reactions I secretly imagined and yearned for in the deepest recesses of my heart, I found, with a few notable but important exceptions, mere apathy and in some instances, outright annoyance.  I suppose this is why I’m feeling a little down right now about our lives, our future, the very choices Pat and I made so that we could experience parenting and the joy of a child’s love within the scope and breath of our marriage.  On days like this I feel life with our children, especially Peter, breeds unavoidable isolation and loneliness.  People are quick to write letters and attend public meetings when there’s a heated zoning issue or a recent crime wave (usually of stolen bicycles), but asking them to rally around and advocate for the rights of a brain-damaged child yields an entirely different response.  Its too sensitive, too messy, definitely too emotional; maybe these same parents worry that even slight involvement might impact the way the school treats their children.  The real crime here is that I didn’t realize any of this from the start.  These aren’t bad people, not by any stretch.  I’m the one who asked too much.  Despite occasional and appreciated heartfelt well wishes, we’re on our own, entirely, and always will be.  I need to remember that.  If only an FAS colony existed for adoptive families like ours, where CPS wasn’t called when you make tough parenting choices for your incredibly tough child, where the school understands the variable and overtaxed brains of our damaged kids, where healthy siblings like Sophie have friends who understand, and where otherwise good neighbors don’t close their blinds to what’s occurring in front of their very eyes.  Kind of like a leper colony only without the stigmatized fear of contagion.  I’d trade a trip to the Galapagos in a heartbeat for that kind of community.  If only it existed.

5 Comments »

  1. Only just now seeing the ‘drama’ on that local mom website. Seriously… do not let two lone voices of angst deter your sharing with the community! Many people cannot stomach the harsh realities of the world and instead choose to walk through life with blinders on. You have my continued unwavering support in your endeavors. I do hope (and I would say pray if I actually did that ;-) that the outcome of the new hearing is in Peter’s best interest.

    Comment by Jen Munn — May 5, 2010 @ 10:35 pm | Reply

  2. Mary, focus on the caring understanding friends that truly love you and your family and understand. Although it would be ideal to educate others and have them respond with empathy far too often people would rather point the finger and lull themselves into thinking that they are somehow superior or better. No one who has not walked in your shoes can truly understand. Treasure those individuals that are open and non judgmental.

    Comment by Victoria Campbell — May 6, 2010 @ 6:26 am | Reply

  3. Mary,

    I’m wondering if there is anyone in your family or friends who you feel is able to handle Peter and Sophie, if just for an overnight for you and your hubby? I understand completely. My family lives out of state, and I also do not have a support network for relief when I’m overwhelmed by some of my kiddo’s unintentional behaviors. And no, my ‘ex’ is not a respite care giver for me – he actually adds to the drama…

    Anyway, I do know my family out of state have volunteered many times to take care of my kiddo, if only for a weekend, to give me a ‘real vacation’ as they call it. Sweet of them. Sometimes all it takes is just to ask. Also, to help them know what to do to support Peter, of course. I know it’s not a trip to the Bahamas or anything, but it might be just enough time away to help. And then, do it again, some time in the future, if you can find that special family member willing. I’m sure they are there, just waiting to be asked to watch Sophie and Peter. Even a night at a Bed and Breakfast would be great for you and your hubby.

    I’m sorry you feel alone. I think we all do, in that we really didn’t know our life would just change so drastically. As far as financials, I just found out about a group who helps kids with neurological issues, for essentially no cost. I’m still looking into it myself for my kiddo. They have locations across the U.S. Just let me know if you’d like the name of the organization.

    My thoughts are with you. And yes, unfortunately, it seems neighbors and other parents at my kiddo’s school are the least likely to understand our situation, unless I share it straight to their face, when they feel the need to criticize my child. It tends to work. It’s not always kind, but if they feel the need to make an uneducated or unaware comment, I feel the need to educate them. Maybe it will help them understand other children more, maybe not.

    Take care.

    Comment by Lori — May 6, 2010 @ 11:55 pm | Reply

    • Thanks for all your thoughtful responses, Lori. I am feeling better now. But to answer a couple of your questions/observations: no, we don’t have family that can or will take the kids for a while. No one has ever offered and they’re quite aware of our situation. I’m very close to my siblings but they just don’t reach out in those kinds of ways. I wish it were different but its not. Also they all live in the south and we live up north. They can all afford the airfare, but I think the hassle is too much. And unfortunately, both my parents have passed away and my husband’s mother is 85 and far to frail to handle them for more than a couple hours (and usually one at a time). But we do have our home teacher, who has kept them over night – usually once or twice a year – and that is a godsend, certainly! And re keeping stimulation down and seeing improvement in wetting – you are absolutely right – I’ve observed the same thing. But you’re also right about our problem – we have another child whom we’re desperate to give “as normal” a life as possible, under the circumstances. She’s already been dealt a bum deal, and she’s a Russian orphan too, let’s not forget, with her own set of baggage, just much lighter than Peter’s. And other than our home teacher (who is incredibly busy) we have no one we can leave him with – so he has to come along.

      Anyway, we’ll figure it out – or he’ll figure it out – one of these days. And just when I was in the midst of despair over what seemed our very apathetic community, a new friend (really, we only just met a few weeks ago as we both have kids on the swim team), must have read my post and surprised me yesterday with two dozen of the most beautiful yellow roses for mother’s day you’ve ever seen. It was the most wonderful, appreciated surprise I think I’ve ever received. What a lovely person she is.

      Take care, Happy Mother’s Day, and I hope your daughter continues to grow and thrive – Mary

      Comment by whenrainhurts — May 7, 2010 @ 8:44 am | Reply

  4. Have you read the blog of Michael Schofield? He also dreams of a community, where children with special needs and their families can get the services and support they need. He wants to build it. You two should talk.

    http://www.janisjourney.org/

    Comment by julie — August 9, 2010 @ 1:04 am | Reply


RSS feed for comments on this post. TrackBack URI

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

The Rubric Theme. Blog at WordPress.com.

Follow

Get every new post delivered to your Inbox.

Join 773 other followers

%d bloggers like this: