Three. (The Beginning)

Dear Danny,

Today is your first day of school. 

Wow, that kind of snuck up on us didn’t it?

It’s been a while since I’ve written you a letter like this.  In the beginning I had intended to write you several times a year – to document and share the ways you were growing, to put it to paper before the hustle and bustle of time pushed the details to the sidelines.  The last letter I wrote was on your second birthday; last month you turned three.  I missed a few months or so. 

It isn’t as though I haven’t tried – I’ve stared down the blank white blinking curser bunches of times – I’ve just never been able to get started. 

This last year has been challenging.
This last year has been amazing.
This last year has been terrifying and exciting and frustrating and beautiful and my words have fallen out from under me before I could get started.   I want to fill in all the gaps eventually but today, I want to tell you the story that led to your first day of school. 

Last year after we lost your Grandpa, after your Daddy started his job, after our lives leveled out and we all took a deep breath, I took you to the doctor for the 2 year old check up that I had been dreading.  You’d had several awful doctors’ appointments in the months leading up to that one and I had no reason to expect that things would go well.  Still, the main reason for my dread was more complicated.  I knew they would be asking me questions about your development – questions that I hadn’t figured out how to answer yet.  By then you were already a mystery to me – simultaneously way ahead of the curve and trailing far behind it. 

Of course, you were a perfect angel at the appointment.  You followed directions, told the nurse your name was Daniel (the first and only time I’ve heard you say your full name), you told me about the pink scrubs the nurse was wearing and talked to the doctor about the turtle in the waiting room.  When the doctor asked me about my concerns and I told her how worried I was about your speech she practically rolled her eyes while giving me a lecture about how kids develop differently in their own ways and because those words were new to me – the mother of the baby who’d done everything ahead of schedule until now – I believed her.  Your Daddy was a late talker.  No one seemed as worried as me.  I decided to give it until Christmas.

The months came and went – new words and new skills coming just frequently enough to keep really terrifying thoughts at bay.  You’d throw us just enough to keep us washed in the “it can’t be this, if he does that” phrases that keep people from making decisions.  I couldn’t write to you because I just didn’t know what to say.  Pictures are easy – just a snap shot before the melt down, just a flash that captures your beautiful expression without revealing the object you are obsessing over, just a fleeting moment that looks like it should.  I’ve had a lot more pictures than words this last year.

It was this Spring when I finally let myself see it – when I realized that no amount of adjustments to your schedule/nutrition/activity were going to make a difference without more guidance.  I remember the moment actually – you were in the bathtub coloring with a set of soap crayons (part 3 of a very specific bath time routine).  You picked up a yellow crayon and looked at me and said:  “What color is that Danny?  Yellow!  Good job!”  You methodically went through every one of them like that – the colors always right, the script never changing from the same thing you’d heard me say a dozen times.  I could understand every word you said, but we weren’t talking.  We’d gained so many words and so many concepts but we were as far away from communicating as we’d ever been. 
      
It was only a few days after that moment in the bathtub that I was reintroduced to Child Find – the Early Intervention program through our public schools.  I’m sure I’d heard about the program before but, like so much of what we need to hear, I couldn’t grasp the information until I was ready to hear it.  I called for an evaluation and they were able to see you in June.  That initial meeting revealed that further investigation would be needed to determine eligibility for services and kicked off a summer of appointments with hearing specialists, speech specialists, child psychologists and social workers.  There were reports and tests and obstacles and tantrums.  Many late nights spent googling the various acronyms that were thrown around as my eyes blurred with tears, wondering why I’d waited so long to get started and how much the delay would cost you.    
The afternoon after your psychological evaluation I dropped you off at daycare with the ladies you love so much – who love you so much – and broke down when they asked me how it had gone.  Instead of going back to work I went and sat in the front pew of our church for a long time, like I did when I was in high school, and stared at the cross.

I started to wonder how much longer I would see you and not it – if all of the adorable little quirks that make your personality so unique would just become items on a check list.  I wondered if I was making a mistake starting us down this path of special education – desperately trying to throw you a life raft without selling you down the river.
I stared and stared and waited to hear the answer to the only prayer I could muster:  Why? 
It was almost a week later when the answer came in the form a phone call – the results of the psychological evaluation.  I spoke with the therapist for a long time and rather than give me the familiar list of tics and delays he went on and on about the great and wonderful things you are doing.  He told me that he could easily see how smart you are, how coordinated and strong – how happy you are.  

That it was obvious to him how much you loved me. 
And as I sat at my desk listening to a professional tell me that he could confidently table some of the scariest possibilities based on the depth of our relationship I started to feel a strength growing in me that I hadn’t felt in the months since our journey began. I’d spent the entire year lamenting that I had not been able to help you – that I didn’t have anything to give you but my love.  And here was this man on the phone, telling me that love was enough.
And I knew it hadn’t been an accident – not any part of it.  When my heart asked “what?”, I was ready to know.  When my heart asked “how?”, I was able to find out.  When my heart asked “when?”, the path was already before me.  When my heart asked “why?”, the answer was this:
You are not too small for Me.  Danny is not too small for Me.  I will make you both strong.  My Love can pull you through. 
And because those words weren’tnew to me – the mother of the baby who defied the odds, the beautiful blessing I thought was beyond my reach – I believed Him. 
Ultimately, you were found eligible for services on the basis of a developmental delay in speech and adaptive behaviors.  PDD-NOS.  Official sounding words and labels for what I’ve known all along:  you can’t communicate well, and now it’s making you angry.  We can’t explain what is happening, so routines are the only way you know what to expect.  It’s scary for you and you lash out in anxiety and frustration.  
I know, baby.  And I can promise you that I won’t ever waste another minute hoping from the sidelines.  We’ve laid the path and beginning today we are all walking it together, wherever it ultimately leads.  You will find your words.  I will find my patience. 

We will find the way, together.  

Love,
Mommy

Happy Birthday, "Papaa"

Thank you for making us laugh.
Thank you for that giant balloon.
Thank you for the electronic voodoo you do.
Thank you for dinner. That one, and that one. That one too.

Thank you for raising the love of my life.

Thank you for the living proof of what love makes possible.
Thank you for having the perfect reaction to the worst circumstances.
Thank you for making us angry enough to change.
Thank you for all of that bacon.
Thank you for loving your hunny and for bringing her into our lives.

Thank you for Danny’s wavy hair.

Thank you for the directions.
Thank you for calling me daughter that last time when it would have been easier to just say my name and easier still to say nothing at all.
Thank you for music, and for the way that it has shaped our family.
Thank you for holding out the net.
Thank you for the flowers.
Thank you for your words of wisdom about airplanes.
Thank you for taking all of those pictures.
Thank you for loving my baby.

Thank you for missing my babies.
Thank you for taking leap after leap of faith for love of your family.
Thank you for your boundless hope.
Thank you for wanting to live.

Thank you for choosing to be happy.
Thank you for the privilege of telling your stories, it is an honor to remember you.
October, 2011

Two (The Sun)

Dear Danny,

Though it seems utterly impossible, today is your second birthday. That means that you have survived in our care for 2 whole years! It also means that its time for me to schedule your 2 year old well visit with the pediatrician, which I will do just as soon as I decide if it is better to have your appointment first thing in the morning, or later in the afternoon when there is a better chance of bars being open afterwards. I’m sure the doctor related horror stories will be funny someday but for now, lets just say that the doctor’s office is… not one of your favorite places.

I’ve been trying to compose this letter in my head for weeks now, desperately searching for a way to describe the last year. Officially, you’ve grown from a baby into a toddler but to us…it seems like you became a little person overnight. You have your own ideas and plans and its all we can do to keep up. You think everything in the world is hilarious and exciting. Unless you are sleeping, we never go more than a minute or so without either hearing you laugh or sing. You are happy – the most joyful, honest and pure version of happy I’ve ever known.
Our days and weeks have been filled to the brim since last September, but even so, I think this entire year will ultimately be defined by the events of the last month. The past weeks have been so life altering that I think we will start stories for the rest of your life with “right before you turned 2…“. This week your Dad started school for the first time as a middle school music teacher and we are just beside ourselves with relief and excitement. The change in your Dad has been wonderful and profound – so obvious that if you were on the moon you could see it from there. He is confident, content and hopeful about the future. I can’t tell you what it means to me that this is the version of your Daddy that you will know now. As far as you will remember he was always a teacher, just like he always should have been. This new career comes after months and months of scraping to get by and is the answer to years of prayer. It was good news that, as fate would have it, came just in time.
August 2nd – a month ago as of today – I was sitting in my office, furiously trying to plow through the urgent work I am responsible for at the beginning of the month. My phone rang and when I saw that it was your father I knew it was too early in the morning for good news. As I tried to pull myself together and leave the office I picked up a plastic supply container from my desk and threw it at the wall just to watch it shatter to pieces. Too often in life we must take the bad with the good. He gives, and He takes away.
Your Grandpa, your Daddy’s Dad, lost his fight with cancer that morning. He was only 62. It all happened so quickly, we had almost no time to prepare. One day I will likely fill volumes telling you this story but for now…all I can seem to say is that we miss him. Oh God, how we miss him.
I know its improbable, but I hope that somehow you remember something about him; maybe his house where you loved to play or his huge strong hands that you found so endlessly fascinating. Maybe even the hilarious faces he‘d make just to hear you laugh. Sometimes when we would get together I’d realize that the two of you were just gazing at each other in mutual admiration – he loved you with his whole heart, and there was no doubt that you loved him right back. He had big plans for you, I know. It’s just so unfair that he wont share this lifetime with you, and that you wont know him the way you should have.
The weather has been unseasonably cool the past few days, especially in the mornings. The days before you were born were cool and beautiful too so I have been thinking a lot about those last moments before we got to meet you. Before everything about us changed with the sound of your tiny cries at the end of a long, long day. I could never have predicted how quickly our world would unravel, leaving you as the only constant. I’ll be honest: the last 2 years have certainly been the most stressful and challenging of our lives. These would have been difficult days without a young child to care for but knowing that your future was completely dependent on us made every cut deeper and every piece of bad news so very heavy. Now that we are on the other side I feel like I can admit how scared we were, how very close we were to losing the game. We owe more to our friends and our family and our great God than our years on this earth may allow us to repay.
Still, the miracle in all of it is you. This morning I left work to come and get you because you were sick – pushing aside my responsibilities once again on the same, impractical day of the month. When I opened the door, you saw me first and before I could take more than a few steps in the room I felt your little arms wrapped around my leg. “Mama!” you said, and flashed that huge smile that you reserve for only me. All the way home you sang your trademark mash-up of the Alphabet and Old MacDonald and, even though I tried to stress and worry about the day, I found it impossible in that moment to do anything but soak up your tiny little voice.
Not long after you were born, after a particularly frustrating day when you refused to eat or sleep, your Grandpa told me that it would all be worth it. That, in the end, you would make me a better person and that the process of becoming better was never easy.
He was right. It hasn’t been easy but at its worst, life with you has been better than I ever imagined. There have been tough times in these years but you are the promise that pulls us through. You are our hope and our light, our measure of all that is good. The difference between standing in the desert and simply standing in the sun.
You are loved, my sweet boy. You are so loved.
Mama
September, 2011

your story to tell

life stuff piles up fast
the thing about pack rats is
we value too much
assigning our thoughts
rationing out nostalgia
to what may be…junk
and if a woman
kept a nameplate on her desk
for 16 months of
bad news, it’s likely
that she is a pack rat. and…
probably crazy
and, truth is, most days
she was barely hanging on
fearful every turn
so if the value
she has given this silly
scrap of junk, is hope
who could blame her for
mounting it up for all to
see: hope is still there.

so now what does she
do with the token of chance
she’s held on her wall

when what she wants now
is to throw it on the ground
crush it to pieces

because hope? is complex
and wrapped tight with memories
of our pride and pain

because anger? is
easier to come by and
harder to release

although hope is now
life beyond 4 foam walls and
plastic punch time cards

and this hope sounds like
music. sounds like laughter. sounds
like children. and love.
so it comes down now
memories and nostalgia
will come down with it
even a pack rat
knows junk sometimes and its not
her story to tell
July, 2011