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…

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Posted in Cerebral Palsy, Conductive Education, Disability, Disabled Children, Parenting | Tagged , | 1 Comment

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.

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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.

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Lost

My mother died…

For the last few weeks I practiced saying those words so I could prepare.   I suppose I knew it was coming and now it has been a week.  I am sitting in the kitchen among the cookie crumbs and stale bagels eating whitefish salad that probably should have been thrown away and drinking coffee that has been sitting in the pot for two days.  These are the remnants of the blessings of sitting shiva. I am too tired to fold up the chairs and put away the tables or do errands or make phone calls. There is so very much I need to do to wrap up loose ends, pay things that need to be paid,and a room full of things to move.  I cannot go.  I cannot face it.  I am lost. I don’t want to talk about it anymore though I know I have more friends and family than I could ever wish for.  I have so much love surrounding me that I could save it in small packages and never run out. I am so very lucky and so very grateful but still I am lost.  I am not looking to be found or asking for help. I want to be lost…if only for a little while.

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My mom…

I wrote about a week ago regarding a rapid and unwanted descent into dementia and Alzheimer’s. However, today, I write about waiting for the phone to ring.  In the past week, circumstances led us to the emergency room and eventually to ICU. My healthy mom who not more than a month ago was ready to go anywhere and to talk about anything, is suffering.  She has a sepsis infection in her lungs and a possible lung cancer we didn’t even know existed. She cannot breathe without oxygen and alternates between fighting with the nurses, sleeping and gasping for breath.  A few days ago, I wrote a draft of this post to prepare myself for losing her.  Nevertheless, in the last three days, the medical care she received was tremendous and the good doctors have saved her life…for now, I think.

It is still true that she may never recover fully because there is just too much sickness so there will be no grand treatment, no effort to thwart whatever may come. It will be months before we know if she has recovered to any real extent.  The medical details don’t really matter. What matters to me is that life should not end this way.

While I feel like I lost the real parts of her a few weeks ago, she was still there in front of me.  At times, visiting her in a nursing home has been like watching life be sucked away piece by piece. I have spent much of these years in  frustration – a bit of  guilt  – and sometimes even anger, but mostly I  just loved her the best I could. Despite her sadness, aches and pains, and utter boredom, she was forever smart and funny and could help me see things more clearly.  She analyzed and considered all the news I brought to her and was able to be a mom to me, love my children, calm me down, give me advice, or change the subject.

But now, I don’t want to feel this uncertainty, it is not welcome.   Despite what may be medically possible, she doesn’t want to live suffering and in despair.  She doesn’t want that for me. If she leaves me, I know what I will feel –  that familiar heaviness, sadness and pain.  The tears will come and be my constant companion until they are not. I will feel and look like I aged ten years and will become someone whose parents are no longer alive.   But, still, death is something I think I can handle.  Instead, we have endless days of loss. Too much loss…

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Larry, Mo and Curly

“Mo gets adopted and then his parents bring him back to the orphanage,” says, Max this morning while getting ready for school. I scooped him up and hugged him very tight and repeated over and over that, “This will NEVER happen. Mommies and Daddies are for forever and ever and ever and even that isn’t long enough. Do you hear me?” I repeated it about ten times. Max looked like he was about to cry and shook his head yes, but did not look convinced. He said, “well, it happened in the movie.”

Many bloggers and writers have covered the issue of how horrendously movies and books discuss the issue of adoption. My good friend Joan wrote about it last year for NJ.com. Just last summer both Despicable Me and Kung Fu Panda ( a karate master and most beloved character of Max’s) handled the story line irresponsibly and hurtfully. We knew there was an orphanage issue in The Three Stooges, but the lure of people poking each other in the eyes and hitting over the head with a hammer was just too great for Max and he couldn’t be swayed. We have tried to keep Sophie from these movies because she has expressed pain about the messages in the past. She too could not be swayed. We are also not going to ignore the fact that these issues exist and try to isolate our children from the rest of the world.

Max is adopted too and he is finally old enough to pay attention when the word hits his ears. Why, again, why is it ok for these movies to treat adoption like it does? In every movie, the only “real” parents are the biological ones and almost every time the adoptive parents are cruel, evil and eventually return the children because they were “bad.” This is unacceptable in 2012.

I rarely rage against the Machine, the Man, or anything else for that matter because I don’t care enough about the silly things most people rage against. However, I do care enough about this. Adoption is not a taboo subject and it is not something that needs to be hidden.  However, there is a line that needs to be drawn in children’s movies so that the message being sent is not that your parents will return you to the orphanage as soon as they are done with you.

I am an honest person, I know very well that I did not give birth to my children.  In fact, my own mother didn’t give birth to me either. I am very grateful to the women who did and very grateful that they gave us Max and Sophie. I support birth mothers’ rights, I support the political agendas of all the members of the “triad” and I understand all the issues better than anyone.  However, there is not one second of one day that goes by that I am not my childrens’ real mother.  And, even more important, there is nothing on earth, not life nor death that will separate us from our children. Yes, we can take a joke, make a joke and even marvel at the fact that no one in our entire family is related to anyone else. But, that never means that we would return our children under any circumstances. In fact, given some of our circumstances, don’t you think we would have?  See, I can make a joke too.

I can hear the comments now, ” It’s just a movie, lighten up.” “It’s supposed to be funny, nobody thinks it’s real.”” Oh, adoption, I didn’t even notice that was an issue.” Yes, I know that there are plenty of fantastical, imaginary, and impossible things  in movies that could never happen in real life. However, our society has decided that certain things need to be discussed in certain ways and portrayed in an acceptable manner.  We can’t mention Christmas in school or have a party because someone might be offended.  We use certain language to discuss blended families, multiple mommies, and people of color.  We are learning to rally against the word “retard” even though we have not yet been successful.

Why is it still ok to think that adoption does not make a real family?

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So… nu…when’s the Bat Mitzvah?

I feel like talking about something else today – and none of the things that I have been talking about. I want to talk about Sophie’s Bat Mitzvah – April 27, 2013.  It seems as though the talk of Bar and Bat Mitzvah’s is multiplying daily. She got invited today to what will be her fourth between now and the middle of June. We have been to several others earlier in the year and expect several more soon.  I have to admit that I am always excited to be invited – the thrill of an invitation, the nod that “yes, you are important to us,” never gets old for me.

I get even more excited when Sophie is invited to events for people we don’t know.  That means that someone thought of her, my girl,  included her on the final list, and want her to join them in celebration.  I am proud she is someone people want to invite.

We have been spending some time talking about her day recently, and for some reason we have come up with nothing.  We have had the date for years, given to us by our synagogue, and decided long ago that she would have an evening Bat-Mitzvah, a service we love for its intimacy and joy.  It just feels more like “us” to us than rushing to get to a morning service that will be over before my morning caffeine has kicked in.

We know she will study, learn whatever she needs to learn, and perform wonderfully under pressure.  I am not worried for one minute that she will not succeed. However, we are all stuck on how to celebrate Sophie.  She is not asking for anything (except lots of chocolate) and she doesn’t want to follow the rest of her class to a traditional dance party.  She isn’t a dancy girl, isn’t interested in the drama of it, and would prefer to just have fun.  We are also clear on the fact that a $40,000 party is not something we can a) afford, b)want, or, c) think is valuable.  There doesn’t seem to be a reason that one day, one party, one event for a 12-year-old girl should cost the same as adopting a baby, one entire year of college or five summers at camp!!!

Nevertheless, Sophie is a superstar.  She is bright and shiny and deserves to be at the center of the world for one day.  I know that after the Bat Mitzvah, time flies and she will be grown.  I have seen it a million times.  I want to preserve the time a little longer, hold onto her for just a few more minutes because no matter how old she gets, I feel like we never get back the time we missed with her.  I want to go back and start from the beginning and do it all again, only better.

Next April, behind the smiling faces (forever memorialized in a leather-bound photo album created by Baruch Schwartz, Photographer) is really a story that is nothing short of miraculous. But for fate or luck or divine intervention, our beautiful, smart, funny Sophie would be alone and abandoned living still in a freezing cold Russian orphanage. She is not.  She is here, with us, sleeping in her gigantic bed, under warm fuzzy purple blankets.  And now, as I sit downstairs on my comfy couch in my home so fortunately  filled with two not-so-ordinary children, I have the luxury of planning a party, as big or small as we want… but it still must be one that reflects all that we are as a family… and that is proving to be no small task!

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