Family, Marriage, Meditation, Parenting, Yoga

You can always change the station….

This weekend, after our new kitchen rose to the occasion in a huge way, churning out meals and snacks for our whole family, I felt so full (literally and figuratively) and happy.  Being all gathered together in our new house felt exactly as I had hoped it would.  The sweet spot that lies between abundance and excess. On Saturday after the festivities wound down, I headed to a daylong yoga and meditation retreat. The day itself was grey and rainy and it felt so good to know that I would spend it quietly on my mat with no greater task than to listen.

 

There is nothing I love more than gathering with family and friends but I have learned that to do it well, I need to build in some quiet time on the back end. I can be completely present to those I love if I can practice that silently on my own. Too much silence and I get a little wacky; not enough, and I get even wackier.  Like anything else, I need balance between external merriment and a quiet internal landscape.

 

The workshop was great, a duet between two smart teachers. They skillfully wove yoga, meditation and dharma talks in such a way that at the end of the day, I was ready to go home because I was satisfied, neither stuffed or restless. Like a well-made meal, a workshop should be a good blend of spices and portions; too much and it’s like drinking from a fire hose, too little and you are left feeling empty.

 

During one of the meditations, our teacher Wes Nisker suggested that we view self-criticism as a misguided form of self-care; the idea that the internal voice that releases a steady stream of worries, critique and doubts is actually trying to help you. I thought this was a brilliant shift in perspective on that particular characteristic we all share. My favorite writer, Annie Lamott, calls the self criticism station in her head “k-fucked” radio. It’s the voice that makes it hard to try new things, or is convinced that at any moment everyone is going to find out you are a fraud and it’s curtains. We all have it, and for some people it’s louder than others. Learning to see it as a form of self care seems to make it easier to reconcile it. Rather than resent it, or try and control it, I love the idea of seeing it as a misguided form of self preservation. By thinking of it this way, it seems easier to shake it off. When some familiar worry or self doubt pops up it seems easier to smile and ignore it rather than feel like, “seriously, you again? Get lost..” Instead it becomes a worried, well meaning friend who can’t help themselves. You smile at their efforts and don’t listen to their advice.


We do ourselves no favors worrying about what could go wrong. Instead, we should be focusing our energies and attention on what is actually happening. Like so many things, it’s way harder than it sounds. But, maybe learning to see “k-fucked radio” as just one of our many channels, we will see that we can always change the station.

Family, Food, Parenting

Do not try this at home…..

gross hand cakeI promised myself when we moved that I wouldn’t work for six months. I would focus on getting the kids settled and on the renovations we wanted to do in the new house.  I was a little burned out by the time we made the move and thought that a break from teaching was probably a good thing.  Besides, moving to the Bay Area as a yoga teacher is like bringing sand to the beach.

Ever since I have had kids I have always worked. Sometimes it was only one day a week and other years as many as thirty-five hours per week.  We have never had any of the conflicts about chores that many of my friends who have families with two working parents have had.  Colin and I have managed to split up the various tasks that govern family life in such a way that we have avoided that kind of resentment.

Last year I had a teaching schedule that several days a week had me starting my work day at 6 am and finishing at 9 pm.  I was always home when the kids came home from school, a hectic time of day filled with homework, playdates, dinner and my least favorite task: making their lunches for the next day.  When this school year first began I really enjoyed putting the kids on the bus, walking back home, chatting with the dog, heading out for a run.  Things like showering with no sense of urgency were new sensations.  Not thinking of my days in 15 minute increments was a welcome change.

In the last few weeks I have made forty cupcakes for the fall festival and spent hours making a spooky cake that looked like it hand a reaching out of it, I have taught myself how to upholster, reading books on fabrics as if they were New York Times bestsellers. I like doing these things. In fact I love doing them; I am just not sure it’s enough.

The hardest hours of our day are from 3:30-6:00 pm.  In the rest of the world they are rush hour, or happy hour.  In our house they drag at half speed.  During these long afternoons I toggle between intense boredom, irritable restlessness and pleasure at the sweetness of my kids. It’s a strange combination, like vinegar covered marshmallows or something.   I was helping Ben with long division, a process so arduous I think the people who built the Great Wall had it easier.  When faced with numbers my intelligent, resourceful child becomes whiney and seemingly cursed with amnesia.  When ask if 59 was an even number today he said no with great authority, “But 57 is”.  We were already on minute thirty of homework.  I had to separate myself from him before I hit him with the zucchini I was slicing.  In the meantime, I had put the chicken on the grill and checked on Mae. I was letting Pete practice riding his skateboard in the family room because we just took the rug up in there and he could practice on the plywood floor.  I would have sent him to the park but he doesn’t like to go unless Ben can come, and at the rate we were going the chances of Ben making it to the park were slim.

Finally Mae emerged from her room after a post school chill and wanted to eat something.  She likes it if someone sits next to her for snack, and I was happy to sit with her.  I will admit to having the thought as I sat next to her that sometimes having a child who doesn’t speak isn’t all bad.  At that moment, Pete announced that there was “the poop of a dog” on the floor in the family room.  Because Mae had just sat down to eat, there was not going to be any poop picking up until she was done, so I got to sit there knowing that at some point in the next ten minutes I was going to have the great pleasure of picking up dog poop inside my own home.


If you drive by our house in the afternoon it looks like nothing is happening.  In truth, not that much is happening, but when you are the eye of that particular storm and every sentence starts with the word “Mom,” you can start to wish you were anywhere else.  I am lucky that I have options, and that staying home with my children is a choice I can make.  It is insanely hard and I miss working and will go back to it eventually.   If I don’t, I will eventually drive Colin crazy with questions like, “Will you teach me how to use the table saw so I can cut this piece of siding for the porch?”  Being a Mom is hard no matter what choices you make.  I find it equal parts wonderful, terrifying and tedious.  It is the craziest adrenaline sport and the longest lecture all rolled into one…..the prize is getting to do it all again the next day. And besides, I would be pissed if anyone else let Pete ride his skateboard in the house.

Family, Meditation

The company you keep…

We are in the new house this week doing errands and scheduling estimates for shockingly expensive home improvements.  I keep walking around this town and looking at people and wondering if I will be friends with them.  It is a very funny thing to do, to look at a stranger and wonder if you would like them.  Essentially, what you are doing is weighing how familiar they look.  The more familiar they appear the more likely it is to imagine that you could have something in common.  It is probably a hangover from some animal part of our brain that prevents slugs from going out and trying to make friends with eagles.  But in human beings it can easily turn into a kind of judgment that doesn’t really benefit anyone.

I have no idea what kinds of people I will make friends with, I walk around the grocery store and find the anonymity both thrilling and terrifying.  I would like to approach building our new community here with an open mind.  I would like to break the pattern of just gravitating towards the familiar and come more from a place of genuine curiosity about who people are.  It is sort of an embarrassing thing to realize that at almost 40 some part of me is still wondering who the cool girls are.

Building a community will take time and I don’t know yet who the new faces are that will one day be old friends.  It is an interesting time to observe my mind and see how quickly when faced with a situation I am drawn to the safety of the familiar.  When we first moved to our last house, I had no children.  Many of the friends I made in those early years are people who have watched our family grow and change.  Those relationships are very dear and those connections so important.  Our new friends won’t ever meet my children as babies, or know that there was a time when we were not special needs parents. In some ways it feels like we are bringing a life in progress to a new place, I am not sure I have ever had that experience before.  It used to be that new beginnings coincided with milestones, the beginning of high school, college or married life.  Our peer group was clearly defined by circumstance which in some ways made creating a life easier.

New experiences are the best way to study our habits. When we take ourselves out of our comfort zone we can see the ways in which we protect ourselves.  I am excited about the prospect of building a community, I hope it is filled with all sorts of different kinds of people and their stories. Every new relationship, be it friend, teacher, or student is kind of an adventure in being human. Seeking out ways to surprise ourselves is one of the best ways to stay awake to all that our lives have to offer.  We don’t have to shake things up in huge ways to experience this, it can be as simple as changing your morning coffee shop. Any time we allow ourselves to experience things in a new way we are waking up a little bit more to all that our life has to offer.

Family, Meditation, Parenting, Yoga

Breaking up with FOMO

Yesterday I realized that Anne Lamott, who is one of my favorite authors, lives near our new house and regularly gives workshops in the area.  My first thought was that we would be best friends.  Then almost immediately I started worrying that now that I was moving there, she would never give a workshop again and I would have missed the opportunity to actually learn from her.  There is nothing about her schedule that suggests that this is true.  In fact, she seems to speak and work fairly regularly with no intention of stopping, but for a moment I was overcome by fear of missing out.

I had never really thought about “fear of missing out,” or FOMO as it is often referred to, as a condition.  The first time I heard someone refer to it, I laughed, recognizing an all-too-familiar trait of mine.  My mother says that even as a child I hated naps because I was afraid I was going to miss something.  I still find myself resisting bed time because there is always more to do, even if it is just hitting the refresh button one more time.

Whenever I think I might be missing out I respond by ignoring my intuition and speeding towards an emotion or decision I probably don’t need.  Fear of missing out is what sends people deeper into yoga poses than they should go. It’s what makes you say yes to a dinner invitation when you know you would rather be at home. It’s even what makes you buy pants that don’t fit just because it’s a sample sale.  Fear of missing out comes from the idea that we think that everyone is having more fun than we are, or more interesting conversations…  They aren’t.

The Buddhists call it “poverty mind,” the idea that you are always missing something.  In our current age when we have instant access to a world of goods and information this idea of poverty mind can be easily reinforced.  It is true, we are always missing something, every minute of every day, all around us are stories that we are not a part of.  We develop a habit of putting our body somewhere and then letting our mind go a million different places.  We reinforce this habit throughout our days.  However, the only place where you can make real change and have real experiences is where your body is.  We limit our ability to enjoy our present moment if we are worried about what we may be missing out on. We create a sense that there is never enough, by not noticing or appreciating what we already have.

We have to train ourselves to stay present, that doesn’t mean we only do one thing at a time or we never daydream.  Staying present means noticing that we are daydreaming, or procrastinating, or multi-tasking, or worrying that we may be missing out on something amazing happening somewhere else.  If we start to become familiar with our own patterns we start to realize that we aren’t really missing anything, it’s all right in front of us.  We just have to learn how to look at our own complicated, messy lives with generosity not judgment.  We have to take time every day to be quiet, to sit, to go for a walk, or any activity that roots you in some way.  It is only then that we can start to recognize that we aren’t missing anything.

I am working to let go of FOMO.  The next time I catch myself wondering if I should sign my kids up for two activities because we might be missing something, or I say yes to a dinner in Midtown on a Tuesday when I don’t have a babysitter, I am going to stop myself and ask myself whether I am doing this because I want to or because I am afraid of missing out.  If it’s the latter I will stay home, and enjoy the peace and quiet that comes from knowing you aren’t missing a thing.

Family, Parenting, Uncategorized

It’s not about the gold star…

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.

 

Family, Marriage, Parenting

I was not expecting that…

the beginningWe are moving, so I am packing.  I went upstairs today to start on the attic.  I have been making deals with myself for days to begin the process, so I was feeling resigned with a hint of itchy pre-boredom as I went up the ladder.  I was starting with the things we use least.  It was a horse race between Colin’s college textbooks, my high school camping gear, and some ice skates–until I saw my breast pump peeking out of a bag.  We had a winner…..

In the bag with the breast pump was a towel shaped like a duck, a tiny sock, a tennis ball, and a copy of What to Expect When You Are Expecting.  I held the book in my hand. I turned it over.  Then I ripped off the cover and the title page, which I ripped in half.  Before I was totally aware of what I was doing, I started ripping more pages, like a bite of ice cream that turns into the whole pint. In minutes I had shredded the book.  I was sitting on the attic floor looking at this huge mess and thinking, “maybe I can wrap glasses in it or something”, trying to make this weird random act of violence against this book make sense.

It does make sense though. It is one of the best selling books of all time, but it sends the wrong message.  It sends the message that if you love your kid enough and you rock them in a chair and wear comfy clothes, and you start with peas instead of peaches and you watch and track their milestones, then you are in the clear.  But that is wrong.  You can do everything right and things can still go haywire.  In fact they probably will.

Here is what I think you can expect:

  • Expect that your 10-year-old will be a Minecraft genius but not remember that dirty clothes go in the washer.
  • Expect that your 8-year-old will be charming and kind and wonderful, but may frequently have days when he cries three times before breakfast.
  • Expect that no matter how much you love your 6 year old, she may not be able to say Mom because her brain isn’t wired the way yours is.
  • Expect that you will look at your husband and feel like you haven’t seen him for days, even though you live in the same house.
  • Expect that you will think that we need as many words for tired as the Eskimos have for snow.  Not sleeping through the night for ten years and taking an Ambien on an overnight flight are two different kinds of tired.
  • Expect that you will see your hands on your steering wheel and wonder why your mother is driving.
  • Expect that you will look at your children at least once a day and think, “I really love them.  I hope they turn out ok.”
  • Expect that every day you get to begin again, and that is all that really matters.

I was a little embarrassed that I destroyed the book, I didn’t know I had any feeling about it whatsoever.  I have learned that having children is not about expectation it’s about learning to see ourselves and them for who we really are and to love each other in spite of it.  There will always be a gap between expectation and reality, so learn the basics:  feed them, love them, apologize often and let them do the same, but don’t drift too far from what’s real.  It’s the only thing that matters.

 

Family, Marriage, Meditation, Yoga

Where you belong…

Ev and Me 1979There is almost nothing more pretentious than quoting the Bhagavad Gita, except for maybe referring to it as “the Gita,” which assumes a level of familiarity I can’t imagine having with an ancient text.  There is however a quote from the Bhagavad Gita that I keep scrawled on a piece of paper in my wallet and pinned by the side of my desk. It serves as a constant reminder not to stray from where you belong.

“It is better to strive in one’s own dharma than to succeed in the dharma of another.  Nothing is ever lost in following one’s own dharma.”

One of my favorite things about seeing someone you love and have loved for a long time is that when they stand in front of you there is a split second flip book that happens, where you see them as all the people they have ever been. This week, my very talented brother published a book called Age of Ambition.  It is about China and is being very well received. When I spotted him last night right before he went on stage to give a talk to a packed auditorium, I saw him as every version of himself. On his face, as he spoke and answered questions from the moderator and the audience, I saw his teenage self, and in his body language, shades of both our parents.  The thing that I saw most of all was a person who is on the right path.  My brother is smart, and charming and would have found success in lots of different fields.  But success and being on the right path are different.  You can be successful and unfulfilled; your success won’t last but the emptiness will.  There is no greater joy than knowing that someone you love is on the right path for themselves.  As proud as I am of his enormous intelligence and the discipline that allowed for this book to exist, I am even more proud that he has found his path and in his wife, the right partner to walk it with him.

People come to me all the time for yoga and meditation.  Sometimes they do want simply to inhabit their body better or to learn to be still.  But more often they are feeling unmoored; their life has moved away from its center.  They have had children, or a partner whose own trajectory doesn’t leave room for anything else. They are feeling ill at ease but they aren’t sure how to get back to themselves.  I can see it in their faces and bodies. I don’t really know how to guide someone back to their center.  I only know what works for me.  I can stay rooted in myself if I am honest about who I am and I do it with kindness.  As soon as I start comparing my mothering skills to someone else, or the state of my house and children, I am lost.  The first moment, I envy how a friend is aging, or feel like my classes should be larger, I am lost.

Every day I sit for meditation, for twenty minutes. I do not collude, placate, engage or respond.  For a brief period every day, I am not an active participant in anyone’s life but my own. This keeps me rooted exactly where I belong.  Right in the center of my own messy, imperfect but perfect for me path.

My greatest hope for my nearest and dearest is that they find their path, and that it includes room for those they love most. I have taken the jacket off my brother’s book and pinned it next to the wall beside my desk as well.  Every day I will look at it and be reminded that the joy is not just in living your own truth but also in knowing that those you love are doing the same.

Family, Marriage

Apraxia Awareness Day

 

Mae ChillingYou might not know this, but today is Apraxia Awareness Day.

As I thought about what I’d write for this post, I longed for a time when I was unaware of Apraxia. There was a time in my life when I thought that children were born, they cooed, they gurgled, eventually busted out with some random word, and then, like a train picking up speed, words came spilling out of them.

My older son talks so much that I occasionally pretend to be lost when we are in the car so that I can demand silence to concentrate on finding our way — a trick that I learned from my mother who did this to defend herself against my endless chatter.

When I thought of “speech issues,” like most people, I thought of lisps or stutters. Or, I assumed that if someone couldn’t formulate words, it was due to malfunctioning equipment, maybe a voice box that didn’t work or a misplaced tongue.

In college, the father of one of my closest friends had a massive stroke and was left with Aphasia.  He could no longer speak, except for a few choice curse words.  It was awful. The thought of him imprisoned in his own body made me sad for him, his family and all that he had lost.

It wasn’t until some 15 years later that I would meet Apraxia and truly understand how  devastating it can be for a human being to be robbed of words. My daughter Mae is living with Apraxia of Speech.

When I met my daughter, she was already walking. We adopted her just after her second birthday. I knew the first time I looked at her that this was going to be a bumpy ride.  She made no real sounds for the first six months we had her. She put nothing in her mouth, and rarely, if ever, pointed.  All of these things I eagerly wrote off as a result of her time in the orphanage. Institutional affects. She was in so many other ways normal. She looks normal. She is, in fact, beautiful   She jumps, she skips, she runs, she can do the monkey bars, and she laughs when things are funny. She just doesn’t speak.

Later, when we got through the hours of tears and testing to finally understand that she was Apraxic, that the part of her brain that manufactured words and the part of her brain that processed them for production and moved her mouth did not communicate, that was when we started to become aware.

If most speech disorders are lisps and stutters than most of the therapists we encountered in the early days were equipped for that.  They had no idea how to handle my daughter, it was like pulling a line cook out of McDonald’s and asking them to be lead chef at The French Laundry. They would hold up pictures of pigs in front of her and simply repeat the word “pig” over and over and over again until she or I would start to cry tears of boredom and exhaustion.  It was only several years in that we were introduced to the therapies and very talented people who could help.  They would touch her face, coaxing sound out of her mouth in small chunks and reward her efforts with incredible enthusiasm.

The thing that you can’t appreciate unless you have a special needs child with a condition like Apraxia of Speech is how much we can adapt and normalize things.  Today, when I see a six year old girl speaking I am in awe. I forget that they do that, because mine does not.

Mine points, she gestures, she solves problems herself, she gets frustrated, she loses interest. If she has thoughts about the weather I have never heard them. She’s never told me how her day was or asked how mine went. I do know that she loves peanut butter and hates jeans. She is not without thoughts or opinions. She has tons of both. She just can’t communicate them the way most people expect her to.

She has made progress, but it’s slow.  It breaks my heart when someone says “hi” to her, and ten minutes later I hear her force out her own version of a greeting.  It takes so much effort and the world has moved on.

I am never unaware of Apraxia. It sleeps in my bed at night and joins us for all our meals.  It is the boogeyman in the closet and a common scapegoat for all our other fears. It is also something that so few people understand. The more aware our friends and neighbors become the more they understand what she needs, what we need.

No individual child is Autistic or Apraxic.  Their whole family is Autistic or Apraxic, as is their community. For as long as one child doesn’t have access to the right tools and therapies, we are all losing.  A person without a voice lives on a planet alone. We owe it to our kids and each other to do everything we can to connect these kids to their voices and meet them where they are.

My daughter is incredible and I love her beyond imagining, and we will continue to wrestle with Apraxia. Someday, I plan to have a conversation with my daughter.  In my wildest dreams I imagine telling her we are lost and she has to be quiet so I can concentrate… maybe, someday.

Family, Marriage, Meditation, Yoga

Fragile and solid at the same time…

Mae and ColinThis morning I sat down to work my way through a giant pile of mail.  Tucked in with all the other mail was a giant medical bill I wasn’t expecting.  It has been many years of giant medical bills and they should no longer take my breath away, but for some reason this one made me feel like the wind had been knocked out of me.  It was Mother’s Day and Colin knows me well enough to know that thing that I would want most is time to myself.  He and the kids were out hunting and gathering a picnic for later in the day, and as I first sat and then stood in the office, then the kitchen, then outside, then inside all desperately trying to calm myself down, I just wanted him to appear.

In my head I was ticking off everything I have learned in my meditation and yoga studies.  I was going back over all the other massive medical bills we have paid, and reminding myself that it would be fine.  Still my head was spinning, I tried to sit for meditation, to lean into the feeling, to see if I could get at what was really at the bottom of it.  Fear? Why the intense reaction to a problem I don’t want to solve but know I will.

When Colin walked in I was so relieved, I showed him the bill and described my complete and total meltdown at its arrival.  He was calm, he agreed it sucked, he said we will deal with it tomorrow when it’s not Sunday.  He didn’t tell me to calm down, or ask my why I wasn’t expecting it.  I was able to exhale, we will deal with it tomorrow.

Being married is hard. Being married with young children is harder. Being married with a special needs child and all the stress that comes with it is harder still.  Sometimes, I can’t believe how hard it is, but when Colin walked in the door and just his presence made me feel better, I was also overwhelmed by how lucky I am. Sometimes it takes these crises that come up — in this case an unpleasant problem with a solution — to remind me to be appreciative of all that I have.

It can be easy to overlook each other in the same house, or respond to the difficulties of a grown-up life by being nasty to each other.  It is much harder to be honest, and sad, to be overwhelmed, and need help.  I hear all the time from people about how their marriage or partner is different than they had imagined.  When you are dating you never play the “How will you respond to medical bills?”  game.  Or, how about “What will we do if our child has a life long cognitive condition?” I didn’t seek out a partner thinking about the dark moments.  But I am grateful every day that I found someone who sees the darkness and even if there is no quick fix will always keep reminding me that there is light up ahead as well, and just to keep moving forward together.

Family, Marriage

Sometimes birthdays are complicated

Mae BirthdayWhen we think of our childhood birthday parties, we think of cake, and songs, pin the tail on the donkey and pinatas.  When your child is on the Autism spectrum, birthdays, like everything else, are complicated.  There have been years when I have not wanted to celebrate Mae’s birthday, not because I don’t love to celebrate her, I adore her.  But it made me sad when I spent time decorating the kitchen with balloons and banners so that like the other children on the mornings of their birthdays she can wake up to a party. Except, she doesn’t seem to notice, she comes into the kitchen, past the pink balloons and the streamers, pops up into her chair and awaits breakfast as if it were any other day.  Her presents do not entice her; there is no anticipation about what she will like, or excitement that builds throughout the day.  The truth is she doesn’t register her birthday or the fuss around it at all.

One year I almost decided not to do anything, I was wiped out. I didn’t feel like decorating and fussing about her birthday when it didn’t seem to matter.  When I mentioned this to a friend, she reminded me that birthdays aren’t about milestones or accomplishments. They are celebrations of a life.  She was right, and I have never forgotten that advice.  Mae’s birthdays are not necessarily about her being 5 or 6 or 7.  They are definitely not about pony rides or pottery painting.  They are about making a choice every year not to give up.

When I decorate the kitchen for the other kids I do it because I know they will come down in the morning and be thrilled to see their balloons and banners.  When I decorate it for Mae I do it for me.  I do it because if I don’t it will mean that I have given up.  The same way I ask her how her day was when she gets in the car at the end of the day even though I know she won’t answer, I will decorate the kitchen and buy her a birthday dress.  I will send treats into school. I will spend time picking out a present for her, because it matters to me that I tried.

We can’t just fight for our kids at school, or with doctors.  We can’t just fight the isolation and strangeness of Autism by finding communities that accepts us and our children.  My biggest fight is never to decide that because she doesn’t care I shouldn’t either.  I care that it’s her birthday because I love her.  I will continue to ask questions that go unanswered, and throw little parties that go unappreciated because if I don’t then it means I have conceded, and I refuse to give up on birthdays or my girl.