The Gift of Perspective

Thirteen years ago I got my ass kicked.

Looking back, I needed a good swift one and I will be forever thankful that it happened.

Thirteen years ago, I was a stay at home mother of two healthy, beautiful boys. I had a lovely home and a fabulous husband. I also spent a lot of time feeling sorry for myself. I truly felt that my my life was HARD. Did you hear me? Things were really, really hard! I had a lot of laundry to do, I wasn't getting much quality sleep and I had to do a lot of grocery shopping. These children demanded three square meals! and constant snacks! Christ! Did I really volunteer for this?

Then along came the boot in the form of baby number 3: Kelly.

My sweet Kelly joined our family and gave us the fundamental gift of perspective. He was born with Down Syndrome and we had no idea of this before he arrived. Our world as we knew it ended.

13 years and one week ago

 We spent a few days feeling stunned, but quickly Kelly found his way into our hearts. He was in the hospital for six days for a suspected heart condition (that resolved on its own) and then we went home and started life as a family of five.

Fast forward to January 2013. For the past couple of weeks I've been having a bit of a pity party.
Once again, here I sit in my warm, comfortable home with my bright and healthy kids and all I can do is feel sorry for myself. I'm not exactly sure what gets me to this place (falling out of routine, winter blues, hormones, or any combination of the three...) but I get caught up in my own shit. I'm ashamed to admit I even uttered the word "bored".

I got a little nudge out of it on Kelly's birthday party. We were reminiscing on what we were doing 13 years ago. What we were doing was struggling. I had just released an 8 1/2 pound baby from my body and immediately had to leave the comfort of my home (where he was born) to have him checked out at the closest teaching hospital over an hour away. At the hospital, he was abruptly taken from me and we were soon given the news: Down Syndrome. After spending a few hours together in shock and mourning, my husband left to take care of our then 3 and 6 year old boys at home. I was left to wander the halls of the hospital alone, dazed and exhausted. I remember finding an isolated hallway and actually lying on the floor, hoping for sleep to come transport me from my nightmare.

Its amazing how our human brain works. We move past these intense experiences and we blessedly heal. If we do things "right", the experiences are stored away and used for growth. But life has a way of rocking us into indifference. We move though our day-to-day and we forget to appreciated the miracles bursting all around us because we are too focused on getting the bills paid or the dinner on the table (again!).

At Kelly's party, I looked at my darling teenage boy and appreciated every glorious piece of him. Thirteen years ago we were terrified of what the future might bring, but we took a step back and lived only for the moment and fell quickly in love. We realized that Kelly's future was no more uncertain than the future of our two other boys, so we stopped worrying and just loved him. The love that we receive back is the purest, most delicious gift and we can not believe how fortunate we are that he chose to come to us.

The day after Kelly's party, I was scrolling through Facebook and discovered that a friend I knew several years ago is currently going through a very difficult time. One of her young children was just diagnosed with a life threatening illness. Slam. That knocked some sense into me real quick. What the hell was I doing complaining? After all our family has been through, I know better!

This little boy whom I don't even know was just my teacher. He will teach his family more than they ever wanted to know and the lessons will be intense and hopefully, miraculous.

So I take a deep breath and shake the foolishness from my brain. I look around me at the same things and situations and people that were right there in front of me the day before and everything looks completely different. Nothing has changed but my attitude, yet it has made all of the difference. I have shifted my perspective. The fabric of my daily existence suddenly seems to come into focus and I now can decipher between the trivial and the essential. This simple shift allows the mundane to fade into the background and I am able to focus on what matters, what brings joy. I make this critical shift more easily because of the difficult times our family has experienced.  These hard life lessons have given our life contrast: the light and the dark. Without the dark, can we really appreciate the true beauty of the the light?

Eckhart Tolle wrote: "If you have not suffered as you have, there would be no depth to you, no humility, no compassion."

Kelly started our journey into depth.  A journey that, in my ignorance, I definitely would have refused if given the option. A journey that has led us to one of our greatest treasures.

Happy Birthday, Kelly!

November, Living Fully and the gift of Ava

Maple grieves
The ghosts of her
Departed leaves.
The ground is hard,
As hard as stone.
The year is old,
The birds are flown.
And yet the world,
In its distress,
Displays a certain
Loveliness"
-   John Updike, A Child's Calendar

"I prefer winter and fall, when you feel the bone structure of the landscape - the loneliness of it,
the dead feeling of winter.  Something waits beneath it, the whole story doesn't show."
-   Andrew Wyeth

For most of my life, I took November for granted. The month was just gray and cold and, up until seven years ago, I didn't truly appreciate Thanksgiving. November was just a month I didn't particularly care for.

There was a certain ominous beauty to it, though. I couldn't deny that. The way nature so obviously turned inward. At first glance, everything appears dead, but is it really?

We were given the most intense, beautiful lesson of our lives in November of 2005. Our fifth child, Ava Mae, was born in our home and lived nine peaceful days. She took her last breath in the very same room she took her first.

We found out that Ava had something special in store for us in my 30th week of her pregnancy. An  ultrasound showed signs of trisomy 13, a chromosomal abnormality "incompatible with life", as the doctor stated. We agreed to the ultrasound because of our two previous births; our third child, Kelly, surprised us with Down Syndrome and our fourth, lovely Grethe (Greta), shocked us with a congenital abnormality that required immediate surgery and a month long hospitalization 2 hours from our home. We were told the two conditions were not related and I was confident all would be well. Statistically, things were in our favor for a healthy baby. But life had other plans for us.

After the ultrasound, I walked out of that examining room carrying the same life inside me that I walked in carrying only an hour before. Inside me, a little girl moved about and made herself known to me every hour of every day, but now I was told her life will not continue after it left the comfort and of my body.

What does one do with that information?

You move forward. You move forward because you still have children that need to eat and run and laugh and go through the motions of living. You move forward because the family needs food and the laundry needs to be done and the bills need to be paid. And when your 11-year old son asks why you are crying, you sit him down with his sweet 9-year old brother and talk about death.

And what happens is totally unexpected. They are not frightened. They are open and curious. We marvel together about the ironic fact that the one thing we can all be certain of, the only thing we can all count on happening in this life, we fear: Death.

What does death mean anyway? What really happens to us? Do we become angels and get to fly around and do whatever we please? Oh, and is Heaven made of candy? It must be. These are the things I discuss with my older children and it is really shockingly beautiful. I spend as much time as they will allow in their presence and I am anxious to talk about the baby whenever it spontaneously comes up. Their perception of the situation is so matter-of-fact and so amazingly light. Mom has a baby in her belly and this baby just may not be built for this world.

Simple. End of story. Now let's get on with this kickball game.

It wasn't so simple for me, however. I was carrying this life inside of me. I felt my little girl poke and move about. I oscillated between hoping for a miracle and knowing my baby would die. The roller coaster of emotions was exhausting. I knew I needed to surrender. I was powerless in the fight. But surrendering is not easy. I needed some help.

In the beginning of November, my mother gave me a great gift. She died.

My mother was a glorious woman. She was beautiful, active and fun. She loved to travel and loved to eat and loved clothes. But something started to happen to my dynamic mother when she entered her 60's. Her speech was altered and her memory was not the same. The experts ran tests and had their opinions, but no one was able to help my mother. She deteriorated slowly and left her family and friends a little bit each day until finally, the mother I loved so deeply, was no longer there. The illness that leached the life force from my mother spanned over 10 years.  At the end of her life, she was in a nursing home, confined to a bed, not able to perform even the simplest tasks on her own.  There was nothing left but her body. She no longer knew me or any of my four siblings.

When I received the call that she was not doing well, I immediately drove the 2 hours to be by her side. I sat beside her with my brother and sister and watched her struggle for her last breaths.  After several hours, I asked to be alone with her. I laid my head on her chest and put my arms around her. I felt the rhythm of her labored breath and asked her to help me with my baby. Help me get through this, mommy. I felt the only way she could do that was outside her prison of a body. I begged her to leave this physical world and help me as a spirit.

She died that night and I was elated. I know it may sound strange, but anyone who has lost a loved one to dementia will understand. Now I had a loving spirit to help me navigate the time ahead with my baby. I was so grateful. Truly euphoric. When I had to spend 8 hours on my feet greeting my mother's friends at her wake and answering all of their well-meaning questions about my pregnant belly, my mother was there. I truly felt joy.

I saw November's beauty that year for the first time. The days surrounding my mother's death were unseasonably warm. Walking home from her wake, the sky lit up with lightning and rumbled with thunder. What a spectacular send off!  I remembered that my mother loved this time of year because the trees dropped their leaves and allowed her to see things in a whole different way. After the storm, I looked out at the leafless trees and noticed their grace and beauty for the first time-their bare branches like dancers reaching up to the heavens.

Ava Mae was born two weeks after my mother died. She arrived almost 4 weeks early and lived peacefully in our home for all of her nine days. There was so much intensity and beauty in those days I can't even begin to describe it here, but what I will try to describe are the gifts she left with us.

She made us stand still and experience the full cycle of life. She made us face our fears and keep pushing through, keep moving forward.

She made us live FULLY. We experienced every emotion- the full range- from the deepest pain to the most exquisite joy. During my pregnancy I explored a lot of spiritual material looking for some answers. I remember hearing Deepak Chopra speak of how we are often too afraid to live fully. I didn't quite understand what he meant until after Ava. If I were actually given the choice to have my child live for only a few days or to skip the whole experience all together, which would I choose?   Her time with us is one of the greatest gifts of my life and I am profoundly grateful for the experience, but would I consciously choose to go through it? Probably not.

Living fully is scary, dammit! Some things in life are so intense, it takes all the courage we have to move through them. I think that's why we don't get to choose. Humans will not choose to go through pain, but it is only through experiencing such pain that the true deep,exquisite beauty of everyday life is revealed.

Any yet, even after this most powerful lesson, I still might choose the to skip the hard stuff all together and take the "easy" road. That's why I'm glad we're not running this show. Because "easy" is boring and nothing ever changes or grows the "easy" way. Oh, there are times when we may believe we have everything under control and have this whole cosmic mess figured out, but we don't. No one does. I now believe its our job to  just flow through this life as gracefully as we can. Ride the waves with skill and ease. Float and hand over the oars, because the hard and fast truth is we are not rowing this boat, mister...no siree.  Poet Annie Dillard wrote, "We are most deeply asleep at the switch when we fancy we control any switches at all".

Ava taught us to push away from the controls. In the end, we had no choice but to surrender and let the experience wash over us. Change us.

Today we will have our yearly birthday party for Ava. We will light her candle in the morning. The same candle that burned every day of her life 7 years ago. We will make a cake and celebrate what her life taught us and what having her spirit around us means to us now. Celebrating her will allow us to appreciate the love we have for one another and will remind us not to take such important things for granted.

And then, without realizing it, life rolls along and even Ava's lessons fade.

But then November comes again, in all of her beauty, and we are reminded once more.

beauty

"I guess I could be really pissed off about what happened to me, but it's hard to stay mad, when there's so much beauty in the world. Sometimes I feel like I'm seeing it all at once, and it's too much, my heart fills up like a balloon that's about to burst. And then I remember to relax, and stop trying to hold on to it, and then it flows through me like rain. And I can't feel anything but gratitude for every single moment of my stupid little life. You have no idea what I'm talking about, I'm sure. But don't worry... you will someday."

-- Lester Burnham from the movie American Beauty