Letters to Sara: 3 years old

My dearest Sara,

You're 3!  I've been meaning to write you this letter for some time.  I've sat down to write it more times than I care to admit. I just can't put into words what I need to tell you....but I'm going to try.  

It was just about 4 years ago today when I first laid eyes on you on that ultrasound screen in the doctor's office..the doctor declared you perfect.  Your daddy and I were so overwhelmed with gratitude and joy.  We fought so hard to have that moment; a moment that I was terrified would never happen for the 2 years we struggled to get pregnant with you....a moment we wanted more than anything in the world.  

When you were growing in my belly, we hoped and dreamed about things we would do once you arrived.  We were excited about teaching you things and raising you to be best person you could be.  A person who loved and laughed.  A person who was kind and gentle.  

When you were born and finally placed into my arms, my dream was fulfilled.  I was a mother, something that I wanted more than anything in the world.  There was never any questioning in my mind.  Being a mama wasn't something I wanted....it was something I needed....I needed to be someone's mama....it was a need so deep and desperate.  You filled that desperate need. You filled my heart with an overwhelming love.....The kind of love you could never expected or be prepared for....The kind that knocks the wind out of you. 

Watching you grow and develop has got to be one of the best parts of parenting.  Like all parents, I had moments in which I felt paranoid, like I was overreacting to subtle differences in your development.  At your 12 month visit, when your pediatrician told me that he was concerned, I thought that he was overacting.....but, deep down, I knew.  At 18 months, when the neurologist told us that she wanted to run invasive tests, I pleaded with her to just give you more time....deep down, I knew.  You were our perfect girl....you just needed more time.....you would show them.....deep down, I knew. Just after you turned 24 months, we started more assessments.....deep down, I knew.   By the
time you were 30 months, we were knee deep in evaluations....deep down, I knew.   You had so many appointments that Spring as your daddy and I sorted through an endless supply of paperwork, confusion, and worry....deep down, I knew. 

Then, one beautifully perfect day in June, I heard the words no parent is ever fully prepared to hear...your daughter has Autism....but, really, I heard the words that deep down, I knew.   Then, the neurologist called and said that you have several rare chromosomal disorders.....words that I never expected to hear.    It was a one two punch to my gut that shook me to my core.  I tried so hard to be brave both for you and the people that loved you.

Even as we sat through your first IEP meeting, I felt like you surely did not belong in special education.  You would get into that class and show them you didn't belong there.  I read more boards, articles, and books on autism than I ever thought possible.  I was in denial and I was angry.  They say that people with autism have difficulty with transitions, but I was the one who couldn’t accept this new role. I didn’t want special. I didn’t want different. I just wanted you...my perfect girl...who was fearly and wonderfully made.

The neurologist had the infamous Welcome  to Holland  poem in her office.  It's often given to parents of newly diagnosed special needs kids. In the essay, you prepare for a trip to Italy. You read up on the culture, pack the right clothes, even learn some of the language. You board the plane. And when you disembark...you are in Holland. Holland is a beautiful place, with windmills and tulips and lovely people. But you were supposed to go to Italy. Pasta! Gelato! Buongiorno! And now you see only wooden shoes and salted herring.  I remember reading it and thinking I don't want to go to Holland.... I just want this to go away.

The vast variety of materials I read in the following months to learn how to be a better mama to you just added to my feeling of inability. There was so much information out there, some of which was conflicting. So many therapies promising to be THE cure. People told me tings like, Trust your gut instinct and you are your child's greatest advocate...you know her best.  

I was afraid that I wouldn't have the capacity to be what you needed me to be. Even worse, I wasn't sure WHAT you needed me to be.   After your diagnosis, your entire future seemed uncertain. Would you have friends? Go to college?  Drive a car?  Yes, in those first days, I thought about those silly yet quintessential rites of passage.  Essentially, my dreams were crushed.....I was deeply grieving.  

We didn't tell many people.  Heck, I wasn't even sure what to say.....she's autistic, she has autism, or she has developmental delays.  It all sounded wrong.   I was still processing my own grief and wasn't in a place to help others process theirs.  Several people told me about autistics they knew and told me that they all had "special gifts".   Of course, without meaning to, their comments just made me feel worse.  Of course you were special!   You were our dream come true that loves music and swimming. EVERYONE has strengths....no matter what their diagnosis.

In trying to process my own grief and trying to figure out how to be a good mama to you, I stumbled across a blog called The Diary of a Mom.  She wrote a beautiful post called Welcome to the Club.  She put into words what I was trying to articulate:

You just want her to be accepted and cherished and celebrated for every last morsel of who she is. If we are parenting our children – any children – from a place of respect, over time our dreams for them will evolve as we find out who they are.  You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

Watch her. Follow her lead. Be patient. She will show you her strengths. More slowly than you might have thought, but they will begin to unfold. Because EVERYONE has strengths. And when they emerge, encourage them. Foster them. Build new dreams around them. Together.

Yes, baby girl.  Together, we are building new dreams as we find out together how to navigate this thing called Autism.  It is your story and I can't wait to watch you write it.  Your daddy and I will continue to accept, cherish and  celebrate you for every last morsel that you are.....A person who loves and laughs. A person who is kind and gentle.  We are excited to teach and guide you you to be best person you could be. But, please know, you have taught us more than you can imagine.  You will for ever be my greatest wish come true....the girl that made me a mama...the girl who is fearly and wonderfully...exactly the way you are supposed to be.  

Happy 3rd Birthday, baby girl! We love you with every fiber of our being....

xoxo,

Your mama