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.   

 

      

Four (Happy Birthday, Stinky Face)

On By skrosenfeldLeave a comment

It is maybe the best indicator of what life is like with your four-year-old self that nearly a week has passed since your actual birthday and I am just now posting this.  Better late than never, right kiddo? 🙂

Dear Danny,
Today you are 4 years old.  I’d say I can’t believe it, or that I don’t know where the time went or how you got to be so big and so strong…but that wouldn’t be quite true.  Time is flying by – that much is certain – but with this last year under our belts, the scars and the triumphs all stacked up beneath us, it wouldn’t be fair to imply that this foundation was easy to come by.  You are a warrior, Danny.  Daddy and I will always be fighting right beside you, but in these battles you are the only one who can carry the sword. 

 

I wish it wasn’t the case, but I will always remember this year of your life as the road to Autism.  Though, the journey that I am speaking of was mine – not yours. This time last year I was clinging to my denial so fiercely that I had convinced myself that it was hope.  Now that I’ve caught up I can see that we have been on this road for awhile now.  And, now that I am more familiar with the route, the bumps and turns don’t scare me the way that they used to. 
There is just something about you, Danny.  Something about your smile, your eyes, your incredible laugh – something that makes everyone who meets you fall in love.  This year has been full of many wonderful things – unprompted ‘I love you’s and full speed running bear hugs.  New friendships, new experiences, new words and skills – just so much new.  And new is so typical…we know better than to take a single bit of it for granted.
This week you will start school again – your 3rd “first day of school” since last October.  This year you will be riding a bus, going to an afternoon class, and going every day.  This was the plan that we landed on when we determined that the County’s program specifically for kids with ASD wasn’t the right place for you.  Now we hold our breath and pray that we’ve made the right choices.  These tremendous leaps of faith that we take – trying to do the best and most productive things with this short window of time in your life – never get easier.  But the only truly wrong choice would be not to make one. 
So we set the stage for miracles…and we jump.

 
Without a doubt, your favorite book of all time is I Love You Stinky Face – a wonderful book about a mother’s love for her son.  You received this book as a gift at your Baptism, so we have been reading this book together almost every night since you were about 3 months old. 
I read it to you while you gazed silently at me through the slats of your crib. 
(I’d whisper in your ear: “I love you, stinky face”)
I read it to you while you screamed and cried and thrashed because you didn’t want to fall asleep. 
(I would tell you “I love you, my big, scary ape.) 
I read it to you while you ran around the room ignoring me entirely, singing your own song and marching to your own beat. 
(I’d say, “I love you, my sweet, terrible dinosaur”)
I read it and read it until it became our routine, until we wore 3 books down to the board.  Then one day, out of the blue, you wanted to read it to me.  At first you were impossible to understand – “Mama” was the only word of the book you could say well for a long time.  But then came: “I love you”. And “dinosaur”. And “alligator”.  Every night there would be more words to fill in the gaps. 
Now, you start at the title page and read almost every line.  When the boy asks his mother if she would still love him if he were a slimy swamp monster, you turn the page and pass the book to me to read her response.
“Then I would live by the swamp and take care of you always.  I’d tell you, “I love you, my slimy swamp monster.”
Then you laugh, take the book back and read the rest.
And I marvel at how that line has always spoken to me – since the first time I sat beside your crib and read through the slats to my perfect baby boy.  Before I knew what the world had in store for us.  Before you somehow knew that it was the one part of the book that your Mommy should say out loud every night. 
The line when she responds with how she would live, rather than with what she would give.  When she offers no specific solution to his predicament, only reassures him that they would be in it together.     
And I thank God for you – for the gift that it is to love you and play a part in the development of your beautiful mind, even as I accept that I may never understand it.   
 
I have had a lot of trouble writing this particular letter to you, Danny.  When I wrote last year, I told you that when it comes to telling your story I don’t feel like I have as much to say as I did in the beginning.  That isn’t it exactly – it’s more that when I start to write out the details I can’t find any combination of words that conveys the forest without losing you in the trees. 
I want to tell you that these last months have been difficult.  Even on the heels of the great progress we have seen in the last year, I have been feeling discouraged by our circumstances more often than I would like to admit.  The transition to the school year schedule has been a dramatic change in the tempo of our lives and you are feeling it.  Tantrums and fits are still the most reliable way for you to communicate, and I have tried to hunker down with you and weather the storm with as much patience as I can muster.  We have also come to realize that we do not have any access to Autism therapies through our current insurance provider, which is a setback deserving of its own story some other time and place.  We are regrouping now, trying to find something sturdy to stand on before taking another leap.
The thing is – I never want you to read these letters and think that our lives were a constant struggle.  You are more than a check list, more than a quest for services and more than a binder of daily reports.  You are far greater than the sum of your behaviors on any given day.  You are my Danny, my quirky little monkey.  You are my privilege, not my chore.  
4 years from now you will be an 8 year old boy – time itself will take care of that with very little input from me.   What you will be is not in question.  But whoyou will be?  That is just beginning to unfold.  Who you will be is worth fighting for even when the work is hard.  Even when the odds are not in our favor.  

I don’t know why, but I just have a feeling that this year is going to be a big one.  Truthfully, they have all been big, but something tells me that this is going to be the year that changes everything.  That we will look back on this time and say that the battles we are fighting now made it possible to win the war. 
The world around you is overflowing with love – with so many people who care about you and want to see you thrive.  Because of their love, I see His love all around you too.  A constant embrace that lifts you up, that reminds me that we are all uniquely loved and our little family is not too small to be held in the very palm of His hand.
Whether this road that we are traveling takes us to “typical”, to the swamp, or leaves us somewhere in between, we will all be there together.  
And as long as we are together, we’ve already won. 

Light it Up

On By skrosenfeld2 Comments

“I mean, I don’t think we’re dealing with anything serious here, like Autism…” 
I said the words hopefully, waiting for the psychologist to agree with me.  That is the way it had always worked before, anyway.  I would lay out my list of concerns and then follow up quickly with some variation of that phrase…“I’m sure it can’t be that”.
He nodded at me and smiled, his eyes full of compassion.  Because he was still in the middle of the evaluation, or maybe because he was a kind man, in that moment he said nothing.  Truly, if the news wasn’t good, silence was the only thing I was going to be able to hear anyway.
But you already know that story.  They found you “delayed”, “quirky” and of course the very important word that we were looking for: “eligible”  
We’ve been looking for another, better “word” ever since.
You are a mystery, little man.  It’s been comforting, in a way, to watch professionals try to put a label on you, only to find over and over again that you are blazing your own trail.  The first 30 minutes gives everyone a different impression of you, and it’s always wrong.  It’s much later that the real stuff shines – the best and the worst, and everything in between.
My little guy who knows hundreds and hundreds of words but rarely uses them to communicate.
Who loves hugs and greets all of his classmates by name, but prefers to play alone most of the time.
Who helps set up for circle time but won’t participate in it.  
Who hates loud noises but can’t help but sing Michael Jackson and Mumford and Sons at the top of his lungs.  
Who can count to 30, but won’t tell you how old he is.  
Who knows letters, numbers and colors but won’t tell you his own name if you ask.
My sweet, precious boy who fits the autism label to a T…until he doesn’t.

Today is World Autism Awareness Day.  For some reason, of all the various causes for awareness that have touched our family this is the one that inspires me the most.  Maybe because all signs seem to put you somewhere on the spectrum and you are the greatest cause of my life.  Maybe because you are not the only tiny soul I’ve loved who has had to face this.
Maybe because this is an issue where I think that real, honest, literal awareness can actually help.  
Reaction to this word in our lives has been mixed.  Some people refuse it entirely while others want to hear a Doctor’s definitive diagnosis before taking action.  “You can’t expect more than that from him!” I hear.  “He’s only 18 months 2 years 3 years old.  He’ll get there.”  They wonder why I didn’t bring you to that party, or that egg hunt, or that costume parade.  And then those same voices watch in shock as you melt down in a grocery store aisle – not because of a toy you wanted or a treat – but because someone didn’t close the doors correctly. 
Some people hear the word and are grateful we said it first, sparing them the stress of wondering if we see it.  Some people send us articles and research, lists of recommended doctors.  Lollipops. Some people seemed to “know” before we did.
My first reaction was poor, no doubt about it.  I can’t pretend that I handled it with grace.
The day I heard the word for the first time, I prayed.  I tried to pray a beautiful prayer of acceptance and surrender to God’s will for you, but the only thing that came out was:  “Why?”  And it wasn’t a nice question either – it was an angry bitter one.  Why myboy?  Why our family?  Why me?  Why did every little thing in our journey to be your parents have to be so hard for us.  For you.  Those questions were the only prayer I could find in me for a long time.
But see…I didn’t know then what I know now.  And I surely don’t know now what I will know later.  It sounds like a puzzle because it is one – a complicated image with many pieces and no edge for guidance.  Every piece looks remarkably similar until it becomes obvious that something doesn’t fit.  I decided to stop asking why and I prayed for patience instead.
“Why” was a selfish plea for an answer that wasn’t coming.  But patience and the acceptance and awareness that eventually came with it answered the more important question:  “How?”
Autism is a terrifying and powerful word, but it isn’t a sentence.  We can choose to run from it, or walk with it.  We can hide in its shadows, or we can allow it to illuminate our path with the resources available in this wonderful world.  We can try to force it to make sense or, as illogical as it sounds, we can simply decide to understand.  In gratitude, and in faith, I have decided to understand.
 
The word may not apply to you, Danny.  When all is said and done, you may never receive that diagnosis.  But the way I felt when I heard it the first time – that the world was ending and the sky was falling – is the reason why awareness is important.  So that mothers and fathers and grandparents and friends will know that all is not lost – that hope is the most powerful word of all.
*****
We have gained so much since October.  You say “I want…”, and accept “first…then…” phrases.  You say “I love you” and ask for hugs and kisses but nothing is more beautiful to me than your newest phrase, always said spontaneously:
“Mommy!  I’m happy!”
And you are.  I believe it with all my heart.
*****
We may never figure out which piece will solve your puzzle, or if it will ultimately be a word like “autism”, “spectrum” or even just “time” that fills in the gaps.  All I know is that as long as we keep working, keep laughing and keep loving the ending image will be uniquely beautiful, because it will be you.  
Never before in story or rhyme
(Not even once upon a time)
Has the world ever known a you, my friend.
And it never will, not ever again.

And we are happy, Danny.

Believe it with all your heart.