Dear Eneja,
From the moment you were conceived, I called you my little world changer as that is exactly what you did. As my firstborn, you changed my perspective on life, as from your conception my world simply revolved around you. For 3 years you enjoyed the spoils of being an only child. Yet, at the birth of your first brother EJ, you quickly adapted to having a sibling. You displayed such love and care for your baby brother that it melted my heart. When Eric was born 2 years later, you were so excited to visit us in the hospital. As you sat in that large black leather chair and cradled for the first time your tiny preemie brother; my heart melted again with love and adoration for my beautiful family.
I am not sure why, but from Eric was a baby you always seemed to have an extra special bond with him …. but let’s not tell EJ this ☺.
You were always asking to assist with his care, from feeding, to dressing to playing with him, giving him piggyback rides and even making mischief with him…like that time when you covered his face with blue markers, or dyed his hair green.
The A Word
Your dad and I were truly enjoying each moment of life with our babies and continued to formulate in our minds the perfect aspirations for each of you. Then came that moment, when we had to talk about the A word. You were not quite 7 years old when your dad and I spoke to you about Autism. We explained that there was a strong likelihood that Eric was on the spectrum. The decision to share with you such life changing news was not a difficult one as even at 7 you were matured beyond your years. It was also important for you to understand what was autism and how it would impact our family. And once more that big sister instinct kicked in; you helped us to observe him, you listened to the way we spoke to him and you modelled our approach. We continue to be amazed at the level of maturity you display. I see the sadness in your eyes at times when Eric does not always engage with you or respond to you, but you persevere. You are the only one in this family who knows all his favorite songs, poems and phrases.
Dedication
Eneja, you cannot understand the pain we endure to see the sacrifices you have made for your brother. As a family, in order to protect Eric, we deliberately have a very small circle of friends, we limit the places we go to, we limit the number of activities we engage in and this list can go on and on. Also we have less time to spend with you and address all your needs. We are not always able to effectively manage our time to help you with your studies, for example, and while we see you bravely trying on your own at times, it hurts immensely that as parents we are unable to meet your every need. After all, isn’t that our duty as parents, to ensure that there is equity in our home?
Challenges Now & In the Future
Then come the moments of aggression; my tears flow every time you or your brother are subjected to injury. After your tears and despair your proudly show us your scratches and bite marks, remarking mom “it does not hurt anymore. It really was not bad”. Yet I spend sleepless nights and worrying days of how I am failing to protect my three adorable children. These worries are further compounded when our thoughts turn to the future.
It was just under a year ago, you had recently celebrated your 12th birthday and with emotions of fear, apprehension and mostly heart wrenching despair, I sat and listened as your dad had that chat with you. How could we ever be in such a position as this? Never in our wildest dreams would we have thought we would need to discuss with our pre-teen that due to her brother’s severe autism diagnosis that his future care, when mom and dad are no longer on this earth, will be her responsibility. What a burden to unload on a grown adult much less our baby girl.
We Worry; You Dig In
But this is the harsh reality that autism parents face. It is coupled with the current worries of providing all the right resources and therapies that are beyond our financial reach and the worry of what the future looks like for our autism children. Who will care for them when we are gone, as even those who may be able to integrate and be independent within society will still at times need some form of support?
And your response … Dad I got this. Remember when I said I wanted to be a speech therapist, it’s because I want to grow up and help not only my brother but all other families like us … and my response… as usual.. I bawled like a baby in amazement that my little world changer was continuing to change my perspective on life…that there was hope when situations seemed hopeless…there was a light at the end of this tunnel.
World Changer
And so my little world changer, the road ahead is not easy, and our journey is far from over. We anticipate more challenges, more tears, more fears but with you by our side we are confident, that we will also have more joy, more smiles, more laughter. We are gonna make it and so will Eric for having such an angel as his sister.
With all our love,
Mom & Dad
