It’s crazy how we have the capacity to love unconditionally. Both Manisha Grace and Keyan Nalik came into being because I wanted so badly to be a mother. I have to admit the happiest day of my life was when Manisha was born. When they put her on my chest our eyes met and I was overcome with the highest form of love and joy.
Keyan was a different story. I had fought so hard throughout the birthing process that is was as though I had gone to battle. Too many people in the room to count and the doctor’s eyes registered fear when it seemed as though I couldn’t solider through. The team feared for him something I learned the next day. When he was finally born I was utterly exhausted so we never had that moment. Instead papa took over to care for his newborn son.
Unbeknown to me, in the wee hours of October 1st, 2003, would mark the day my greatest teacher would come into my life. Great teachers are those that make us question everything, stripe us to the core of our being to leave us wondering why???
On several occasions, far too many to count, Keyan has brought me to my knees begging, crying and praying to a higher power to figure out how to live with the stress, frustration and harsh reality of living with a boy on the severe end of the autism spectrum. Times get so dark that I fear we as a family may stay stuck– helpless, hopeless, fearful and alone. As a mama bear I can’t wallow so I dig to find nuggets of hope – anything that will bring us back to light, love and happiness. In times of desperation I go back basics - to those things about Keyan that make this journey special, unique and worth living through. There are moments that bring us so much happiness that it feels as though our hearts will explode. This is where
Keyan has taught us the most valuable lessons of ALL!!! Life is all about the small stuff – if you are waiting until you climb Mt Everest, write a best selling novel or win an Academy Award then I fear you’ve missed the point.
“The best and most beautiful things in the world cannot be seen or even touched - they must be felt with the heart”.
A list of nuggets that help get me through:
· Keyan’s smile- the one he flashes at me that reveals both the huge gaps in his teeth and the dimples which he inherited from my dad. The kind of smile that is expressed with both his mouth and his eyes. The one that says “I love you mama” or “thank you mama for making me smile”.
· There are times when I love the fact that he doesn’t carewhat people think of him. If he has to burp, fart or shout out he does what feels good to him regardless of what society dictates. He is not imprisoned by expectations imposed by society. (I admit at times this can be a challenge but wouldn’t it be great if we simply didn’t give a shit what people thought of us).
· He reminds us everyday what is important in life: family and LOVE. He has taught his father and I that what is most important is what lives within our four walls. We are a TEAM no matter what. We have to be each others priority or else we won’t survive.
· He has taught me patiencebeyond my previous scope. Don’t be fooled I still have no patience when it comes to stupidity, line ups or traffic. I have chosen to reserve all my patience for Keyan because I believe he deserves it most. If I lose patience with Keyan then we all lose.
· Keyan reminds us that it’s all about the simple pleasures: we get excited about the things most people take for granted:
- A new day – starting fresh
- A full night’s sleep
- That regardless of age my BIG little man will always want to cuddle with his mama bear. I’ll let you in on a secret – one of my favorite parts of the day is when Keyan and I go to bed at night. Yes, I let him fall asleep in my bed with me (papa transfers him later to his own bed).
- Going to a restaurant and not having to rush through a meal or leave the restaurant prematurely
- Going to the movies as a family
- Cycling on a tandem bicycle
- Ice skating – albeit the activity lasts maximum 20 minutes
- Splashing around in the ocean, pool or spa
- Having my son brush his own teeth and dress himself for the day
- Sitting in the summer sun enjoying an ice cream cone
- Eating a meal all four of us at once
- Birthday cake – “happy Birthday” is bar none Keyan’s favorite song of all time. We love to watch his reaction every time a cake is brought to the table
- Listening to my son laugh in hysteria
- We are grateful that we have children and that they are happy and healthy
I truly believe Keyan pushes me to be the best version of myself. I have had to force myself to see light when all around me is dark. Because of the profound love I have for my two children I live within that light however small it shines.
I often tell people I don’t want you to feel sorry for me. I strongly dislike PITY in any shape or form. Feel any way towards me and my family BUT pity is not welcome here. Instead respect us, our limitations and our boundaries. I want you to know that at every turn all four of us: Audrey, Kunal, Manisha and Keyan are always doing the best they can.
I wouldn’t change this life for anything. Why? Because it is my life.
My dearest son - thank you for teaching me that life is lived in simple everyday spaces.