Deception

Today I am going to write a little something about my daughter. Her name is Mia. She was diagnosed with “Classic Autism” a few days after her second birthday.  Do you want to know what I remember most about the day she was diagnosed? It’s nothing profound. I do not vividly remember all of the air rapidly escaping my lungs making it hard to breathe. Nor, does watching all of my hopes and dreams for my daughter slowly float out the window, one at a time, as if in a dream, strike me as my most intense recollection. Even though both of those things occurred, that is not really what I most remember from that day. No. I remember what she was wearing that day – pink leggings, a black shirt with blue, green, and pink balloons.

(Mia, two years old, on the day of her diagnosis — wearing the outfit. June 2008)

Do you want to know why I remember this so much? I can assure you it is not because it was particular favorite of mine (because it wasn’t). I remember it so much because I couldn’t stop looking at my daughter. And the more I looked, the more I realized she was exactly the same as before. I really couldn’t figure this out in my mind, because I knew she was not the same. She was forever changed. In a way it was like meeting her fully for the first time.

That day, right after her diagnosis, we took her out to the Rain-forest Café for the first time. We wanted to celebrate Mia. We wanted to celebrate knowing. We had waited for quite a bit of time to be told something of that magnitude, even if we were already convinced of the outcome it was nice to finally know. Does that sound silly? Probably, but to Roger and I, it made perfect sense. We went out to celebrate ALL the great things that she is made up of. And that day, for the first time, it included something else – Autism.

I am not being completely honest here. I think I probably should be. I think I need to be. We most definitely went there to celebrate Mia, but we went there for one other reason as well. The motivation that brought us somewhere we knew would be fun was obvious and unspoken. It didn’t need to be. It was something we both needed. It was simple, one more moment of normalcy. We wanted to hold off on telling the world. We wanted one more hour to just be us. We wanted just a few more minutes for Mia to be the Mia she was before the diagnosis. We only wanted a little bit more time before we had to put on a brave face and tell the world. We just wanted a few more seconds before the “I’m sorry’s“ and the bewildered looks from friends, family, and strangers alike would break down our door and invade our lives forever, relentlessly remaining. Once it was out, we could never take it back. We just wanted a little bit more time to be your average family; just two people with a child, as average and normal as the rest.

(Mia, two years old, on the day of her diagnosis — wearing the outfit. June 2008)

I think we made the right choice. Mia had a great time. We sat near the waterfall. I remember Mia wanting to touch it. I remember her smiling and laughing when the gorillas started making noises and beating their chest’s in a primal rage. Just doing something fun with Mia was enough to change the mood. She was ecstatic and before long we were happy too. By the time we left I had started to come to terms with something I had known since the beginning. Something I had spent countless midnight hours researching alone online only a few short months after my daughter’s birth. Something I had already diagnosed myself.

I remember talking to Roger on our ride home; Mia was happily playing with a new toy elephant we had bought her. I’m not sure if it was him or I who said it, but we decided that the diagnosis changed absolutely nothing about our daughter. She was still our Mia. Still the same as she had always been, since day one. We, in our own minds, for a brief period of time, had changed who she was. We had taken away her autism. Something she cannot be separated from. Autism is not what defines my daughter as a person; it only defines her reactions to this world. The day of the diagnosis was sad and in a way I lost something that day. But what I lost was NOT reality. What I lost was my own lies. And what I gained was far better. I gained the real and full version of Mia. I gained the truth.

(Close up of Mia on the day of her diagnosis. June 2008)

Today, I still have those pink legging’s and that black t-shirt with the little balloons on it. They rest silently in a box in my basement. I saved them on purpose. I saved them because that was the day I truly got to meet my daughter. I saved them because that was the day I finally fell in love with who my daughter really was and not just what I had wanted her to be.

 

 

18 thoughts on “Deception

  1. Here is a confession…I just cried through that whole post. It touched parts of my soul that I didn’t know existed. I never knew what that day must have been like for you, and I was too afraid to ask…I’m so thankful for this post. And for Mia…she changed my life from the moment I met her. 🙂

  2. That was amazing, Kim. I know I just told you that(twice) but it can’t be said enough. You are a great writer Kim.

  3. Kim. Im speechless, amazed, happy, sad, so many emotions. You are amazing, to say the least. Mia is so precious!! Mia is Mia, Autism dosent define who she is, ugh I cant stop sobbing. I love you!

  4. wow! you are a beautiful person/ take care and keep us up to date on her thanks bob yuck

  5. As I read this I remember that day vividly.I remember the fear of sharing a reaction with you and Roger that you would cause you to feel that I loved Mia less or that I was displaying sympathy .I did not want to make you think I could or ever would love Mia any less because of Autism.I only love Mia for being Mia, she is and will be forever the most wonderful , amazing , loving child now and prior to what a doctor has labeled her.She to me is a gift that allows me to cherish life with ever ounce of my being!I love you and Roger for the love you share with each other and Mia and most of all for giving me and the rest of the world Mia.Thank you and spectacular job on this post.

  6. Oh Kim. That was so amazing. Thank you for letting us into that piece of your life. Truly beautiful and touching.

  7. Kim, I’ve never met little miss amazing Mia, but I am sitting here with tears running down my face…

  8. This is amazing Kim… Your an inspirational writer especially when you talk about beautiful Mia! I can’t wait to read on.. Love you!

  9. The way you described this day is beyond incredible, it is as if I was with you. I love that you describe your meeting your daughter as you did. She is blessed to have you and Roger just as you are to have her. Thank you for sharing this so candidly don’t ever stop. Thanks for the morning cry it was truly beautiful.

  10. This story of Mia is amazing. I admit just as everyone else did, I started to tear up. you wrote this so beautifully, you are a great person, and mother. Mia is very very blessed to have you and Roger.

  11. Kim this was so beautifully written and so touching I teared up a number of times! Love you and your family so much!

  12. That was beautifully raw and honest, Mia is so lucky to have you as her mother! Please keep writing, you are amazing 🙂

  13. Dearest Family…. I too know your thoughts… our little man Connor… is still the baby we brought home to love… his challenges like Mia’s are with the outside world …not with those that love us. I commend Connor’s mom and dad and resident Grandmother… and baby sister Petra… all lives are intertwined with love and challenges…but love outweighs all… Keep up the love as you do and the acceptance of a beautiful little daughter…God bless NL

  14. Kim: I don’t know you and you don’t know me, but I went to high school with your sister. She shared your blog, and I’m so grateful that she did. This is a beautiful and honest way to share your experiences with your precious Mia. I work as an ABA therapist one-on-one with 2 preschoolers who have autism. I do not 100% understand your struggles and joys as a parent; but I “get it”. Your outlook and attitude are inspiring. Thank you for sharing, and please keep up the great writing!!!

  15. This was beautiful. Mia is beauitful. Your beautiful. Beautiful outside but inside as well — just read this blog. Mia is a lucky girl for having a mother like you but you are lucky to have Mia. She’s meant for you!

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