Tag Archives: special needs

Befores and Afters

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I remember the day it began- because of course you never forget. And the odd thing about those days is that you don’t realize when you wake up that it will be a day that changes your life. When you wake up it is just a day. It is a Monday or a Wednesday. It’s just a day. For me it was Sunday.

It started with a birthday party for a friend’s toddler. It started by watching my three year old son playing and showing off my ten week old daughter. After all the excitement my son was tired. Like I always did, I went to put him down for a nap. I snuggled him as he drifted off to sleep. Or rather, he should have drifted off to sleep.

Instead he began twitching his hand in mine and then he was shaking rhythmically in my arms. And I didn’t know it as I screamed for help, as I waited for the ambulance, as I watched helplessly while he seized, that it had begun. I didn’t know about the hospital stays, the sleep deprived EEG’s, the med evac flights, the doctor’s visits, the meds, the side effects, the IEP’s, the sleep studies and all the other parts of parenting a child with epilepsy. At that moment I only knew that my baby was sick and that I couldn’t help him.

But it had begun. That day changed the trajectory of our lives. I found strength I did not know I had. I learned (slowly) that whatever expert I met, I was still the expert on my son and that I needed to stand up for what I felt in my heart to be right. I learned that parenting a child with a serious illness is a marathon and not a sprint. I learned that there are good days and bad days and though the good days often outnumber the bad, the bad ones can be so bad that they leave you reeling. I learned that asking for help on those bad days is the only way to survive it.

I also learned that people can get used to anything. The medication regimen that once seemed so difficult to coordinate became routine and the schedules that once overwhelmed us became second nature. It all just became the new normal, such that some days I forgot what it was ever like before it all began.

And it’s funny because although I can mark the day it began, I can’t mark the day it ended. We are mercifully three years seizure and medication free. I no longer watch him vigilantly while he plays (though watching him twitch in his sleep still terrifies me). I no longer worry every time I leave the house. I have adjusted to our new “new normal.”

But it’s not the same as it was before it began. I and my family were changed and marked by that day and the ones that followed. We were altered in ways mundane and meaningful. I am a better mother and advocate now than I was on that day- not that I was bad before or that I wanted to learn in the way that I did.

Life happened on that day. I can mark the before and the after. I also know that there will be other befores and afters- hopefully less traumatic than that one. Every morning I wake up, life can happen to me. And I know now I can survive it.

The Man in the Maze

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When I was twenty three, I went on a trip with my family to the Grand Canyon. While I was there I bought a necklace from a Native American woman from the Hopi tribe. The necklace depicts a man entering a maze. I was told that the maze and the man within it, are a metaphor for life. It is an image and idea that is common to many Native American tribes, each with a slightly different understanding of it.

The explanation given to me was that the maze represents life as journey. We spend our lives in the maze, through twists and turns we often feel lost. We want to get out of the maze- to reach the end. What we do not realize is that the end of the maze is actually death. Life is the maze.

At twenty three I loved the symbolism. I was embarking on a new journey, entering grad school, and I thought the metaphor of the life as a maze was fitting. At the time I bought the necklace, I think I thought of life as a journey and that I was entering a new phase of my life.

Years later, the symbolism is still important to me, but today it means something different. Today, I understand more fully the ways in which life truly is a maze. I am several iterations of my career beyond where I was at twenty-three. I have had two children, one of whom has had significant health issues and learning challenges. I have lost friends to illness and violence, seen friends’ marriages crumble and watched as life challenged those I love.

I have also known the extraordinary joy of motherhood, the love and support of a strong marriage, the resilience of my children. I have experienced the excitement of remaking myself and discovering new aspects of who I am. I have witnessed the incredible strength, determination and grace of those who have suffered losses and faced heartbreaking challenges. I have seen love bloom after the devastation of divorce. I have been awed by beauty, great and small, and the diversity of the human experience. Which is to say, I have traveled in the maze- with all of its variation.

I love the message of the man in the maze. Too often we spend our lives believing that if we can just get through this one thing, everything will be OK. If we can make it out of the maze, our lives will be wonderful. But for me (at this moment) the symbol means that there is no leaving the maze. If I make it through one part of the maze, if I turn the corner, I will simply arrive in another section of the maze. Perhaps it will have fewer twists and turns, but it is the maze nonetheless.

Life is the maze. It is the twists and turns; to borrow a phrase, it is the slings and arrows of outrageous fortune. I will not spend my life waiting to exit the maze, waiting for things to get better. I will fully live and experience the journey, knowing that not all of it will be fun.

The maze is a journey, an adventure, a voyage into oneself and the unknown. You cannot escape the maze for a better life. It is your life. You can only choose the path you take and what you learn along the way.

I do not know what the symbolism of the maze will mean to me in twenty or thirty years. I only know that the accumulated wisdom of my time in the maze will have affected and altered me. My understanding will have been transformed by further living. I will not hope for an easy path- only the wisdom and courage to grow and evolve in the maze.

Marathon Day

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Today is Marathon Day in Boston and this year there are people gathered together for many different reasons. Some people are here to run in one of the greatest athletic events in the world- testing their endurance as they make that climb up heartbreak hill- some hoping to win a title, other striving to prove to themselves that they really can. But for many others in Boston today they are here because of the tragic events of last Marathon Day. They are here to honor those who cannot be here. They are here to prove that they have endured. They are here to show the strength of a city and its resilience.

Some of the people show physical scars- battered bodies and missing limbs, while for others the scars may not be visible; emotional and psychological scars – the despair of loss, the trauma of having been touched by violence.

Which is to say that the people in Boston today are very much like the people you meet everyday. Some of the people you meet carry the physical scars of life while others seem untouched by its cruelties. And yet, just because you cannot see the scars- does not mean they are not there.

There are parents caring for children with disabilities or children caring for sick and elderly parents. There are people for whom the pain of mental and physical illness is so crippling that every day they get out of bed is a personal victory for them. There are those who are haunted by trauma from their pasts and those who worry where their next meal will come from. The variations of human suffering are great and the resilience of the human spirit inspiring.

So as you go through your day, and indeed , through your life, be kind to those you encounter. You have no idea what burdens they carry or the path they have had to walk. For many of us, every day is marathon day- a day of remembrance, endurance, triumph, and pain.

Life Lessons From Dr. Seuss: Helping Horton Hatch the Egg

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One of my favorite books is Horton Hatches the Egg by Dr. Suess. It is the story of Horton the Elephant who sits faithfully on a bird’s nest in a tree for fifty-one weeks after he promises the mother that he will babysit the egg. The egg, abandoned by its mother, eventually hatches into an “elephant bird” (read the book- I am not doing it justice!).

It is a book about the transformative power of love as well as loyalty and responsibility.
It is also a wish. After Horton hatches this amazing creature, the reader is told “and it should be, it should, it should be like that! Because Horton was faithful! He sat and he sat! He meant what he said…And he said what he meant…And they sent him home happy, One hundred per cent!”   We all want to believe that our hard work will be rewarded; That all the blood, sweat, and tears that we pour into our careers, our relationships, and our children will pay off and that we will be one hundred percent happy.

And perhaps it should be like that. But all too often it isn’t. Even the happiness from a great victory can be short lived. I often imagine that the elephant bird goes back home with Horton and is teased because he is different or that even if not teased by others, he himself feels isolated and alone. I imagine that Horton, the dedicated father he has become, stays up late at night worrying about his child’s future. I imagine that Horton’s happiness does not stay at 100% for very long.

What do we do when life does not reward us as we would like or even as we deserve? How do we rise to the next challenge? Part of the answer is actually the first part of Horton Hatches the Egg. Horton shows up. He takes on responsibilities and plugs away even when it is hard. As they say, 90% of success is just showing up.

But another part of the answer is sadly absent from Horton’s tale. Horton sits on the egg alone for 51 weeks. He never asks for help. Perhaps Horton fears that others will not be willing. Perhaps he feels that no one else could do it as well as he does. Perhaps he feels that he will not be living up to his word if he takes even a short break to stretch his legs and see his friends.

Horton makes the mistake that so many of us make- believing that there is only one right way to do things and that only he is capable of doing it. Sometimes the best way to show up is to know when you need a break. Sometimes it’s about delegating. Sometimes it’s about connecting with others who are dealing with similar issues and learning from them. Sometimes showing up means getting help to view things from a different perspective.

Through his love, devotion and dedication to being there, Horton helps to create something beautiful and special. We are all, in our own ways, capable of being Horton. But we shouldn’t have to do it alone.

The Storms of Life

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As another winter storm bears down on New England, I engage in my pre-storm ritual: obsessively reading weather reports and blogs.  I love weather.  I love storm watching. I feel (despite much evidence to the contrary) that if I read everything I will know what the future holds. I will be able to predict what will happen and where. I will be prepared.

Of course, I am not. Meteorology may be a science but it is clearly not an exact one. Every storm teaches me that the future is unknowable, and therefore uncontrollable. My constant reading aside, the weather will do what it plans to do. Rain/snow lines will shift, low pressure systems will unexpectedly move in and my day will be affected in ways I hadn’t planned.

In short, the weather is just another area of my life over which I have very little control. The career I planned in my twenties is very different than the one I have now. The marriage I imagined as a child bears little resemblance to the one in which I happily find myself. The beautiful children I have today are very different than the ones I daydreamed about as I held my hand over my swollen belly all those years ago. What happened? Life.

All the preparation in the world, all the good advice, all the self-help and parenting books, could not prepare me for the ways that life intervened. I could not have predicted the ways that love, economics, ambition, violence and illness would affect the trajectory of my life.  All the reading and planning could not have prepared me for the ways in which life would alter and change me- shifting priorities, values and beliefs.

Control is an illusion.What mattered more along the way was knowing myself and being open to learning more.When life challenged me, my willingness to adjust, go with the flow and when needed, set limits, allowed me to grow as a person- to not only survive, but thrive.

We focus a lot in our society on being prepared. And preparation is important. Too often though, we focus on the wrong kind of preparation. We prepare for life’s storms never realizing that forecasts change and that the storm we prepared for is seldom the storm that arrives. We cling to dogma and ideas about the way things should be instead of looking within to build strength to find our own truths.

What I have learned is that flexibility and humility are my lifelines; knowing what I can and cannot control and learning to ask for help when I am tossed in the waves of life’s hurricanes.

I suppose that I like to watch storms because it provides me with an illusion of control. But I know now it is an illusion. I know that I can no more control the storms of my life than the storms in the Gulf Stream. But with the weather I can pretend. So, today I’ll buy the loaf of bread and the gallon of milk and enjoy watching the storm, if and when it hits.