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Me, me, me and my blog

For years, I have written this blog, sometimes regularly, sometimes not so much… In fact, I was surprised to find out that this nonsense has been going on for about five years.  I write when I have nothing else to do or when I have too much to do, but whatever the reason, it always makes me happy…

As all good procrastinators, I also read a few other blogs- particularly one about a boy with CP named Max, oddly enough, written by a mom with whom I have lots in common.  I have tried a few times to befriend her, but for some reason she doesn’t seem to see as much value in that as I do and blew me off.  The other blog is about a family who has a daughter with Down’s Syndrome, but really it’s just about how perfect and wonderful and beautiful and crafty the mom/photographer’s life is.  I read these two because I am ridiculously jealous that they both have become well known published writers because of their blogs.  They have insane followings and all kinds of wonderful things happen to them because they write.  I want to be them…

However, since they are already taken, I have no choice but to be me.   From today on, my blog will be found at wearingcostumes.com. Please visit often, bookmark it, comment on it, pass it along.  I love everyone who reads this blog, all three of you!

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Next?

At this very second I am arguing with myself about everything.  I literally have those annoying  voices in my head and they are both pissed. My good fairy is disgusted with me because I am begging, literally begging to go back to sleep, eat junk all day and hide my face under the blanket.  My bad fairy is saying, “Hey, what wrong with a little rest,  you should just stop for one day, what’s the big f-in deal?”

This is what it is like in my head – no one in charge.  Its a virtual free for all and I need someone to  make the decisions because I clearly cannot be left alone with myself.  Here goes… I have been working out every single day for about 7 weeks, sometimes more than once a day, eating only good, clean, healthy food, doing the housework, finishing the laundry, even putting it away, paying the bills, doing all my work, cleaning the house, heck- I have even made dinner most nights.  I haven’t yelled at anyone, the kids are fine, I’ve seen some friends and I have even organized the filing cabinet.  I’m bored of being so damn good and I want to eat a grilled cheese sandwich and do nothing all day while Hun is hard at work and the kids are suffering at school.

Is that so terrible?  I have never, not once in all these years when I have been home, done nothing after the kids left for school.

I am seriously going to have a problem with being retired … My term just ended on the Council, and while I am still involved in things, my meeting requirements are significantly limited, my semester hasn’t started and it will be an easy one, my house is as close to decorated and finished as it is ever going to be, my mother went and died on me, my kids don’t really need anything… even Max…and I am totally superfluous.  I thought I would get more bang out of working out and watching myself get skinnier everyday, but the thrill of staring at myself in the mirror while wearing yoga pants and a sports bra is kind of wearing off and it turns out that it is not possible to lose 10 pounds every day no matter what you do.

So, what next?

Sometimes numbers are cool too!

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 2,600 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 4 years to get that many views.

Click here to see the complete report.

Parting Words

Today… a reprint from last night’s meeting:

Thank you for giving me this opportunity to speak at my final Council meeting. As you all know, I did not seek re-election to Metuchen Borough Council. This decision was not a political one nor a reflection of any action taken by the Council.  Instead, it just feels like my time to go.  I have been fortunate enough to serve these past three years with Mayor Vahalla and my fellow Council members. While the faces may have changed a few times, the desire to do the best job possible was ever present. It feels good to be told that I will be missed and I suspect that is mostly because people like to see what I am wearing or what hair style I am sporting at any given time. Nevertheless, as my mother always told me, “ It is best to leave a party while you are still having fun!”

 

On a more serious note, I want to take this chance to thank Metuchen for the support and kindness you have shown me and my family.  In almost every encounter, people have been gracious and warm and I have many more friends now than I had before. I have had a front row seat to celebrations and losses, ribbon cuttings and parades.  I witnessed the Congressional Medal of Honor being awarded and the expansion of our cultural and artistic community.  I have seen businesses thrive and some unfortunately fail. I have awarded Girl Scout badges and watched Emergency Management literally save our lives multiple times.  I have been honored to witness the events of so many Metuchen residents up close and personally.

 

However, in government there are difficult and frustrating moments.  At those times, I hope that residents and Council members remember that we are all neighbors and that our official actions are personal too.  The hardest part of the last few years was reading hateful and false comments about the Council online or hearing rumors spread unfettered.  I wish there were some way I could assure those of you who feel disenfranchised and angry that the men and women sitting up here are serving without pride or glory.  There is no personal gain, no back-rooms deal, no secret society. In fact, you may be surprised to learn, that Mayors and Councils have unselfishly allowed the given stipend to remain unchanged for more than thirty years.   Metuchen is a model of honesty, ethics and good management.  If you take time to learn the truth, I can promise you that the joy of shared contribution will be much more rewarding than spreading lies could ever be.

 

As in all walks of life, things could always be better.  I’m not here to pat myself on the back.  I want to take this time to speak of things that did not get done.  I will not be present to complete some important projects we started like ensuring that the thoughtful development of Pearl Street is realized, providing borough-wide wifi, the appointment of a communication specialist, and the expansion of the farmers’ market to a permanent space. A few of the most pressing items to me that remain unfinished are the development of an Accessibility Commission to promote the needs of residents with disabilities and additional funding and greater attention to the best uses of our Senior Center.  We have failed to look carefully enough at the benefits of having a borough-wide community center and we have not answered simple questions about the development of that public space.  Additionally, I have spent three years with  our Senior Citizen Commission and I implore the Council to consider an increase to the budget for our senior’s programs and services. Finally, we must spend more time planning ways to afford necessary upgrades to our infrastructure and utility systems especially considering the risk of future storms like those we have seen recently.

 

I leave my fellow Council members to hold these and many other projects dear.  I trust that you will do the right thing in all circumstances and I will always remain proud to have worked with each of you, the employees of the Borough, and countless volunteers who make Metuchen a special place to live. Thank you again for this opportunity and best wishes to all for a healthy and happy New Year.

Where does one find words?

Months ago, I wrote, and I wrote, and I wrote and then I stopped writing. It was never going to be a permanent condition – the stopping of the writing- but it is just that way sometimes.  I never know when the last writing will happen just like I never know when it will pick up again.   I actually didn’t realize I had stopped until someone I love just asked why I haven’t written.

A book I once read, by an author I like but can’t remember, wrote about how you never know when the last time for anything will be.  Even absent death or loss, we sometimes stop doing what we do and we sometimes, regrettably, even stop seeing people we want to see.  I never planned to stop writing but I just stopped thinking and now I am going to start thinking again. There were reasons I stopped thinking because sometimes there are things you just don’t want to think about, but I don’t feel that way anymore, so here I am.

Much has happened in the last few months – and for the first time in a while – almost all good. I have not felt this way in years… years…lots of years. Lots and lots of years.  Max is doing great and school is terrific.  The horrors ( and I do not use that word lightly) of last year are behind us.  His recent surgery was low drama and he seems strong and healthy. There are demons and challenges, but they are not bringing him too far down.  Sophie is doing what all 7th grade girls should be doing… growing up fast and fierce with her Bat Mitzvah only months away… Hun works 5 minutes from home and can help with the kids in a way I never dreamed possible.  My own health has finally improved and my skinny jeans are back in the rotation.  Charlie, the new pup, has joined the family and while she sees fit to destroy most things in her path, I will never be without a dog again.  She brings light and joy to all of us.

I wouldn’t be a good Jewish girl if I didn’t follow all that “kvelling” with a strong “poo-poo” and if you don’t know what that means, it translates to “don’t give yourself too much of a shout-out, or the evil eye will shine upon you.” If I don’t take it too far, maybe I can tempt fate just this once.

A Letter to Max

As I have been known to do, I like to lecture.  I like people to sit still and listen to me talk. I actually get paid to do this!  The only people who don’t sit still and listen to me talk live with  me!  I have been trying to get Max to sit and listen to me tell him how proud I am of him, but his eyes glass over and he changes the subject and I am suddenly reminded of my beloved Hun.   So, for lack of an audience, here goes:

Dear Max:

You didn’t really want to come here and you haven’t made a secret of the fact that, “This ain’t no camp!” You really miss home and your friends and you don’t like being away from Daddy.  However, you get up each morning and you face a day of 6 hours of so much work on your body that most of us would have given up long ago.  You have pushed yourself despite aching muscles, tight braces and tasks that most of us find easy but plague you nonetheless ( tying shoes…) You are willing to tolerate the “CP Tune-Up” I give you here each year that includes new braces, newfangled socks, different canes, different walkers, and this past year two surgeries and several rounds of painful casting. You think we torture you and while I suppose it might look like that (to most people) you have to trust that we do it out of an enormous amount of love and undying hope for an easier future.

Unfortunately, there has been a by-product of this type of intensity.  Being surrounded by so much CP, you have expressed concern and confusion.  You shared with me that you feel both guilt and fear.  Some of the children here will never do the things you can do.  You are afraid that you might become that too.  I have tried to assure you that you are still on your way up, up, up, but fear of loss is part of your life too and all I can recommend for you is courage and patience.  If I had enough to spare, I would surely share.  The guilt is new.  You feel bad for the others who cannot do what you can do.   I would never have imagined this if I didn’t hear it in your whispers.  You said that you have challenges, but others have greater ones.   I can only wonder how you, of all people, have such empathy while I, the appointed parent, still struggle with finding joy and acceptance.

We have spent so much time working on and talking about your disability, that I know you might think it is the only thing that matters about you.  I often fear that we have made it so as much of our life is spent accommodating it, fixing it, paying for it and worrying about it.   I have attributed it to the fast and furious approach to intervention and what I thought was good parenting.  I don’t regret anything we have done, but I vow to try harder, a recurring theme here, to take advice so oddly given to me by the Smurfs movie.  After the five (!) times we watched it this past week, the main character wonders why Smurfs are named after a personality trait (Clumsy, Gutsy, Brainy…you get the point) and opines that it doesn’t make sense since we are all much more than just one thing!

If I were a Smurf, I  might be named, “Worry,” or ” Crazy,” but if you were a Smurf, you certainly would not be “CP Smurf.”  You are so much more than your legs or your walking.  You are often more than we can contain and I promise to remember this from today on.

Thank you for being such good company this summer and for trying so hard.  I hope you find the courage and patience you need and hold on to your kindness and empathy for ever more.

All the love in the world,

Mommy

Courage?

I have decided to admit that what I really need is a little courage. I found this bracelet in shop in my new most favorite town, Eastown – Grand Rapids. This is a funky little, artsy downtown area next to the suburban utopia, East Grand Rapids. There are bookstores, art galleries, coffee shops, yoga studios and funky, tattooed, bike-riding, cool looking, smart people everywhere. I have been spending time here going to hot yoga and having coffee.  It is what Metuchen could be if it took itself a little less seriously and put a smile on its face. Yes, the irony of my role in that is not lost on me.

A woman named Sally appeared in my life last week and brought with her some of the courage I think I need. She is 60 year old woman with CP who owns a company that designs custom equipment for people with disabilities. She specializes in custom graphic canes and crutches and is the process of making Max a pair of Harry Potter canes. He is going to be using these canes from now on to replace the walker he loves a bit too much. I have high hopes for these canes. Sally has written a few books and poems about the strength that is needed to parent a child with a disability. She writes to honor her own mother who passed away two years ago. We had a heart to heart on the phone from her home in Minnesota to my home away from home here. She reminded me that there is a time and place for research and therapy and doctors and equipment but that sometimes you just need the courage to keep on going. I never thought about it that way…

Did I do this?

I  was looking forward to my trip to Michigan as a chance to get back into the habit of writing what I like to think of as my previously entertaining and pithy blog posts.  I have been away from writing for far too long, consumed by life.

As it turns out, I drove 13 hours to get away and somehow failed to realize that I accidentally brought myself with me.  I was rather unorganized this year in the packing and preparing for our journey so I assumed, that in my haste, I would leave my heart and head at home… however, for those of you who have been intimate with my drawers and closets,  the truth is that I am never too far from organized. Therefore, as much as I tried, I failed miserably at leaving myself or anything else behind.

I am here, but I have yet to find the peace and relaxing among the midwestern blondes with their chipper outlook on life.  Last year I found it endearing and heartwarming but now…what I wouldn’t do for a loud, obnoxious, fast-talking Jersey girl!

The real problem is that Max brought himself here too.  I wanted more than anything for him to leave behind the events of this past year, find some peace of mind, a little fun and some relaxing.  He is having a very hard time.  He is not genuinely happy here or anywhere else.  Sure, he can have some laughs, look happy in pictures, and smile his gorgeous smile, but his anxiety and its ugly cousins have come here too and he is all too able to eloquently explain his feelings of sadness, despair, anger and regret.  He is still pissed at the world for one very good reason – because he has CP. He doesn’t want to be here working on his walking (which is coming along great, by the way, along with excellent swimming) he wants to be “normal,” and he isn’t able to accept anything less.

I have travelled the world, gone from here to there trying to find a place where Max will have what he needs to feel comfortable. He doesn’t feel comfortable at home all the time with his lacrosse/soccer/baseball/basketball friends and he doesn’t feel comfortable here with his walker/canes/wheelchair friends either.  Why?

If you ask Andrea, the brilliant director of this program, whom I believe is one of the smartest people I have ever encountered, she says it is my fault.  She says that I have not accepted Max and therefore he cannot accept himself.  I baby him too much, fail to toughen him up, do too much for him and let him wallow in self-pity.  I make excuses for his feelings and find reasons why he can’t do things.  I am responsible for him not feeling comfortable with the other children and I am to blame. The solution must come from me.

Is she right?  I look around at the other families, some of whom have children far far more disabled than Max and they really do seem ok.  They do seem to have acquired a peace of mind or a resolve that I have not.  I asked one of the moms here who has a daughter in Max’s group, if she really is ok.  That is as close to the conversation as I have ever been able to get.  She said, “Yes, I wish it were different, but I have really accepted the fact that “S” will never walk or be fully independent.  I said, “Really?” She said, “Maybe you need to go talk to someone…”

Clearly, everyone here thinks I am nuts.

The Home

The nursing home… I must have told 100 people in the last few weeks that my mother lived in a nursing home. People at the hospital kept asking me where she lived and I answered their questions and filled out their forms obediently.  However, I kept feeling the need to justify the reality.  I believed that people might think her life wasn’t worth living if she was already in a nursing home so they might not try to save her. I kept clarifying that while she did live there, I took her out all the time and went to movies and lunch and shopping. I even found myself saying that her room was nice and big and beautifully decorated.  I started to tell strangers that I visited her all the time and began to impulsively list all the things she was able to do a mere month ago. I suppose my over-sharing was due to both my fear of them dismissing her and my concern that I would be misunderstood. In general, I felt no guilt about the decision to go to the nursing home, but I continue to feel the need to explain – or rather, over-explain- to anyone who will stand still long enough to hear my dissertation.

I think I needed these strangers, who may have only be pretending to care about us for the moment we were in front of them, to know that the last few years had been wonderful. While I know my mom hated the idea of living in a nursing home and couldn’t stand most of the other residents because they were “old and lived in a nursing home,” she was always exactly where I needed her and always patiently and securely waiting for me to come visit.  I could write for hours about the politics of nursing home care, our failed social service system and the realities of outliving your money, but I won’t.

I will just continue to answer questions honestly and vigilantly watch for that familiar look in the eye that feels a bit judge-y to me.  I will continue to stand up for what I know to be true and try to protect our choices, even though I can no longer protect her.