Tag: motherhood

Family, Mindfulness, Parenting, Special Needs

What We Knew and When We Knew It

Posted on by kosanford

There are few feelings I can call up with as much clarity as I can the feelings I experienced the first time I read Mae’s first report that labels her as Autistic. There was almost a physical sensation of drowning, a kind of overwhelmed I had never experienced before.  Sometimes even when we know things, seeing them written down gives them a weight they didn’t have when they were just thoughts.  The tangible quality of the report meant that my suspicions were now confirmed and that there were experts who looked at my child and were naming those behaviors I had tried desperately to ignore.

 

It has been seven years since I first held that report, seven years since I had the feeling that life would never feel normal again, seven years since I joined the club of Autism families, seven years since I learned that the diagnosis is the first and hardest step. Recently, we have started seeing a new neurologist. After several years of taking a break from the constant doctor and therapy appointments, we are back at it.  As I sat in her office last week and she outlined for me the referrals and the tests that we would be doing over the next few months.  I found myself almost moving back in time.  It was as if, it was 2011 or 2012, years consumed entirely by Autism, hand-wringing over medical bills and watching my child for any sign of improvement to justify the fact that Autism had taken every aspect of our life hostage.  I worried as I sat in the doctor’s office last week if it is possible to do both: can we manage the numerous appointments and therapies and still have a normal life?

 

I left the appointment, exhausted and fragile as if all the weight of the original report had rushed back into my life.  These last few years I have convinced myself that I am completely at ease with my child’s Autism, I was reminded last week that I will never be.  I can easily love her for who she is. I no longer wait to hear her voice, or expect that one day she will wake up and want to live in my world, but I have found this peace because I stopped asking questions or looking for answers.  However, as she gets older it is time to focus again on all the ways she isn’t who we imagined she would be.  We will do a series of tests, we will go back to the days of fighting with the insurance company, sitting in therapists’ and doctors’ offices who try to provide answers to questions none of us can even name.

 

There is a part of me that questions why we should even bother, a part that already wishes we had never met this new doctor or initiated this whole chapter.  However, there is another part of me that knows that this discomfort I feel is all just a part of what it means to be Mae’s mother.  It is my job to look for answers, just as it is my job to teach her brothers to never take anything for granted.

 

I think people assume that the hardest parts of having an Autistic child are the parts they can see.  The tantrums, the lack of communication, the loss of freedoms, but they are wrong.  The hardest part is the feeling that there are always more questions, there are always more ways in which you could do better.  The hardest part is reminding yourself that your job is just to love your kid and keep putting one foot in front of the other.

Buddhism, Family, Marriage, Meditation, Parenting, Special Needs, Uncategorized

The Many Faces of Memory

Posted on by kosanford

I think a lot about memory.  As I get older I remember details or the way something felt, rather than events.  I can’t remember the name of my second grade teacher but I remember exactly what the hooks looked like where we hung our jackets.  It was a small hallway leading into our classroom, with hooks on either side.  There was a window at one end and when the sun would shine in you could see all the dust moving in the air. I liked that little room, the wood of the floor worn down by many years of kids like me, the hooks with our names written underneath, a spot for everyone. The only thing I really remember about that school is the coat room and it’s hooks, and the way the sun would slice into the space lighting up a small section of busy dust .  

 

Memory is all about connections, fragments of days and events stick around in my head, some feel random like the coat room, some are sweet like the memory of the day Colin proposed or the days when we met our kids. Some are still very sharp and real like the hours we spent in waiting rooms of doctors as we slowly unraveled Mae’s diagnosis of Autism. I can remember both the feeling and the details of these days with incredible clarity; the emotion of them accompanies the home movie as it plays in my head.  Sometimes it can be like reliving the experience, both the happy tears and the sad ones.  

 

I am always interested in how memory affects behavior. My sons don’t like getting in trouble because they remember how rotten they feel when they have done something they shouldn’t.  They are motivated to make choices that keep them out of trouble by the memory of a feeling.  I can’t really eat sugar any more, not because I don’t like it but because I remember that it makes me feel awful.  When I am struggling to motivate myself to go running or sit for meditation I remind myself how good it felt the day before.  Memory is a powerful force in everything I do.

 

I am always interested in the things Mae remembers.  Does she remember the feeling of the day we adopted her or of being on the airplane? Does she remember the feeling of all of the operations and doctors visits that filled our days when we first got home from China?  I remember the sadness, exhaustion, and helplessness of them more than I remember the names of the various doctors and all their grim reports. I always wonder if she remembers them at all.  

 

She has a very clear memory for the things that matter to her, she always knows where her favorite snacks are, and a stash of plastic for her to play with.  She remembers where we keep her swimsuit and is more likely to find the ID card for the pool than I am.  She pays close attention to the things she cares about, and ignores all the rest. She is my child and I think that she is brilliant; one of the ways I convince other people of this is using her memory as an example. She can’t speak but her very good memory is proof that she can learn, and I am always quick to point it out.

 

When you live with someone whose brain is largely a mystery, memory is proof of connections she can’t verbalize but that clearly exist. As I age, my memory is changing.  It requires more effort to hold on to the details.  I feel like my brain has become one of those vests that people use for fly fishing.  It is filled with pockets of information, song lyrics, old phone numbers, directions to homes I don’t live in anymore, passages from books long since passed on to friends.  My sons are always interested in my memories of life when I was their age, what was it like for me to be 11 or 12, they are often frustrated when I describe the memory of a feeling instead of telling a story.

 

Most interestingly is how we can change the role that memories play.  I remember that first crazy year after Mae’s diagnosis as a series of events, but also now in retrospect as my own personal endless Ironman.  My memories of having survived it are something I call on frequently to remind myself that nothing is impossible.  I have started to think of my memories like money in the bank, I can call on them when needed to provide perspective, motivation or to save me from myself. I have also learned through my meditation practice that I have a tendency to get stuck in my own memories. I have learned by watching my own mind that I can replay or relive events long since over and still feel the irritation or sadness that accompanied them.  It is a habit that does not serve me well.  Why not revisit the happy memories instead of the ones that make my blood boil?  Your memory can keep you from making the same mistakes twice and encourage you to repeat things that have worked in the past, but the best idea is to invest yourself and your attention in your present, because for better or worse that is where your life is actually happening.

Family, Parenting, Uncategorized

It’s not about the gold star…

Posted on by kosanford

MomMy mother doesn’t like gold stars, in fact she doesn’t like attention of any kind and feels about applause the way a cat feels about the bath.  In her own quiet steady way my mother has made her life about finding the beauty and the magic in places where other people can’t see it or don’t think it exists.  She does this in small ways, like choosing the Charlie Brown christmas tree every year despite the fact that there are many gorgeous, full ones available.  And in large ways by spending her career as an advocate for the rights of women and children all around the world.

My parents have sold their house.  It has a plaque on it that says “John Knapp House 1760” in case you thought your eyes were deceiving you about whether or not it was old.  The people who have bought it will perhaps tear it down. We knew that and recently signed the demolition papers that accompany the sale.  The land is worth more than the house to anyone but us, and for the most part we have made peace with that strange reality.  So, recently when I walked by my mother’s house and saw that she was planting pansies I couldn’t help myself.  I laughed and said, “Are you gardening for the bulldozers?”  In my family we have a long history of taking uncomfortable truths and whacking each other with them until they stop feeling weird.  She looked at me, smiled and said “No, it’s still my house and I would like to look outside and see pansies.”

She is right of course. She won’t move until August, which is several months of looking outside your window at no pansies.  Do I think it is a little bit like the band playing as the Titanic sank? Absolutely.  If she didn’t plant them no one would notice except her.   We are all too busy going a million different directions. She didn’t plant them for us, or for the bulldozers, she planted them because she loves them. My mother has built her life around the belief that no matter how grim a situation there is always the opportunity for the human spirit to triumph.  Whether it was giving voice to those most downtrodden on the other side of the world, or believing in the power of spring flowers to uplift us all.

She has quietly taught me and everyone who knows her that there is the possibility for magic in all things. That life’s most beautiful and poignant moments come in the places where we least expect them.  We can choose to see the joy and possibility in our everyday, not because we want gold stars, but because it makes for a better view.