Month: April 2014

This Easter

On By skrosenfeldLeave a comment


Dear Danny,

Last Friday, a day that the Christian church recognizes as Good Friday, was a big day for our family – though we hadn’t decided to share the details with you just yet.  You woke up, got dressed and went about your day as you normally would.

Your Daddy and I prepared to go for an ultrasound for a pregnancy that was in its 10th week. 
 

I remember so clearly the day I got the news – laughing on the phone at work as the nurse read me the results of my blood test.  You see, buddy, we have wanted to give you a little brother or sister for…well.  Let’s just say a very long time.  We knew that we could never do anything to jeopardize our ability to provide for you, our first and most important priority, so the most aggressive option we had at our disposal for those years was hope.  

Hope is powerful but it doesn’t make the work of waiting any easier and, much like the weeks and months that led up to us finding out about you, I was starting to wear thin.    

We were planning to begin sharing the news with close friends and family after this appointment.  This had been my most uneventful first trimester by far – something I wrote off to my being healthier than I’ve been in a long time – but I didn’t want to push my luck.  Still…I wasn’t consumed with fear and doubts about the pregnancy like I had been in the past.  People who didn’t know our news would stop me to tell me that I just seemed so incredibly happy.  And, truly, I was.  

So when the image appeared on the screen, a heartbreakingly perfect little body so small and so still, I held my breath and told myself that I was wrong.  As the minutes passed and the doctor took measurement after measurement, I told myself to forget that I should be able to see a flickering heart in that tiny chest by now.  As the doctor put her hand on my leg and told me that she couldn’t find a heartbeat, there was only enough air left in the room for me to manage a weak “I know”.

And so we walked out of the office heavier, darker people than we walked in and went to a radiologist for another opinion at the request of the doctor.  I prayed for a miracle but this time – with the heartbeat monitor laying flat on the screen – it was miserably obvious, even to us.

There was little time to mourn – we had a service to prepare for that night, and rehearsals the next day in preparation for Easter Sunday.  I pushed my sadness down as far beneath the surface as I could.  We would push through the weekend, and cry on Monday instead.

This isn’t the first miscarriage I have had – but it is different in every way.  I think that having you, Danny, has kept many of the lowest and emptiest thoughts at bay.  Still, it adds a unique sadness to the affair knowing that you have experienced this loss too.  A gift that you did not even realize had been given has been ripped from our hands and you are poorer for it its loss, just as we are.

As I sat in the service on Friday night, listening to the mournful choruses that are the trademark of the Tenebrae service, my heart was breaking into pieces around me.  I was at home in the darkness of that night, content to stay there in sorrow and in hiding.   
  

But Easter is a story of light.  Easter is the triumph of the world’s most perfect love story, for God so loved the world that he sent his Son to save us.  To break the bondage of sin and death forever and give us the gift of eternal life.

The story of Easter didn’t end at the foot of the cross, just as our story didn’t end in a delivery room in 2006, a hospice in 2011, a nursing home last October, or any of the times that death has crossed our path and brought us to our knees.  Our story doesn’t end today, either.

We will mourn the loss of a life so new it had hardly been shared and celebrated.  We will say goodbye a lifetime before we will be able to say hello.  And surely, we will find our way back to the light.


Danny, today you woke up, got dressed and are going about your day as you normally would.  And when we see you later tonight – if we forget to smile, if we don’t take you to the playground, play pretend birthday or have pizza for dinner… I will simply pray that you will be able to see our love in the dark for just a little bit longer.  
Because we are Easter people, and we know that joy comes with the morning.

Where feet may fail

On By skrosenfeld1 Comment


 Dear Danny,
We have shared our lives with an Autism diagnosis for 8 months now. 

That is the triumph of our last year.  And yes, I mean triumph, as strange as that may sound.  We spent much of your 3rd year chasing a “word”.  Naively, I believed the word we were chasing was autism, but we had already captured that one.  The word we actually needed was diagnosis – a word that changed everything by changing nothing at all.

Because of course we knew, didn’t we? It wasn’t a surprise.  When we found the right doctor it wasn’t even a question anymore.  The why’s, where’s and when’s faded into the background – only how’s as far as the eye could see.  This word had yielded a plan, and we were off.
It is difficult to explain what this last year has been like.  Our wins have been nothing short of miracles and even our losses were filled with profound lessons, measures of mercy and grace.  You are who you have always been, but we are catching up.  The world is catching on.

Once again, today is World Autism Awareness day – part of a whole month dedicated to getting society to recognize the beautiful gifts of the autism community.  Many people will wear blue, the schools will decorate puzzle pieces, and some businesses will “Light it up Blue” – all with the goal of increasing support and acceptance for individuals and families affected by autism.  Inside the community there will be debates about which organizations have the best intentions – who reaches the most people without marginalizing them.  There will be debates and blogs and protests but, mainly, there will be conversation.  In my book, that means that they are all doing something right.
In the biggest picture, Autism awareness should have many effects.  It should result in compassion, creativity, and courage – a dedication to helping individuals on the spectrum grow and learn.  It should go beyond awareness and into acceptance, even love.  In the smallest picture, the one I see from behind my own eyes, it means much more.  

“Come,” Jesus said.  So Peter went over the side of the boat and walked on the water toward Jesus. But when he saw the strong wind and the waves, he was terrified and began to sink. “Save me, Lord!” he shouted.
Jesus immediately reached out and grabbed him. “You have so little faith,” Jesus said. “Why did you doubt me?”     Matthew 14: 29-31

You were about 18 months old when I first saw this storm in front of me.  When I started to see the waves lapping the sides of the boat my first instinct was to wrap you in my arms, bow my head, and hope for it to pass.  We stayed like that, huddled safely in the boat, for a long time.  Occasionally I would hear the call to come out on the water, but…you were so small, and the ocean was so unforgiving.  I reasoned that I could do something – parent better, read more, work less.  I could fix everything, and we could stay in the boat forever.
But the call came over and over again, until it couldn’t be ignored a minute longer.  I took the timid steps out onto the water and took you to your first evaluation.  I was surprised by how wonderful the specialists were – how helpful and kind.  I stood confidently through test after test, certain that the storm was passing us by, until one specialist brought autism into the discussion as though it should have been obvious.  I felt the water rising up around me – the clouds were as dark as I’d remembered.  The ocean was as deep as I had feared.  I cried out “Save me!” and just like that we were back in the boat, pretending that the waves had all been a bad dream.


“If I had to listen to that every day, I’d kill myself”
That is the worst thing anyone has ever said to me about you.  We were waiting in line to check out with a cart full of groceries and you were chatting to me about the doors opening and closing behind you.  Honestly, I was shocked anyone could even hear you.  I was leaning with my elbows on the cart, trying to make sure you knew how interested I was in hearing you talk about something that was clearly so important to you. At first, I didn’t even notice her staring.  

And there were those awful words hanging in the air, heavy and low.

 
For the first time in ages I didn’t know what to say.  I had prepared myself for the reality that your behaviors would make you stand out – that there would be people in the world with little patience for your routines, your temper, or your perpetual motion.  It didn’t ever occur to me that at your best, you could still attract the attention of someone who might say something so awful about a child.   Any child.
I will never think about autism awareness in the world without seeing her face.  Without remembering her giant wedding ring and bags full of juice boxes and crackers that made me believe that she was a Mom.  Without remembering how she looked straight at the most beautiful thing in my world and saw only an inconvenience. 

For awhile I had convinced myself that once on the water was enough.  We ventured out, we fell, we asked for help and we received it.  But of course that isn’t where our story – or anyone’s story – ends.  Every time we need to make a new decision – an IEP, a placement, a new specialist – we must commit ourselves again to stepping out into the waves.  Any time my fear convinces me to keep you at home, to avoid a new place or new people, I am taken back to being huddled up with you in that boat. 

Fortunately, the Voice that calls me out onto the water does so without ceasing.  When I am most afraid, I hear caring teachers who remind me that I can trust you, wonderful friends who remind me that I can trust myself, and your own tiny voice – a beautiful sound that I hear more and more often these days.  

Mommy!  Come!
My commitment to autism awareness now is to listen for those voices.  To recognize when I have simply built a bigger, more comfortable excuse for myself instead of pushing us forward.
I can’t promise that the seas will be calm, or that we won’t end up in the water more often than not.  
I can only promise to get us out of the boat.