Changing Expectations

Baby Mia coming out of NICU and headed for recovery in the Barbara Bush ward!

When you’re expecting a child, you do just that. Expect. Those expectations are brought to you in the forms of visions and dreams about this little bundle of life living deep within your womb. Visions of who this tiny person will grow to be. What they will succeed at. What you will do for them to create the best life possible. Dreams of memories that you will create with all of the things that you aspire to share with your small creation. Yes, these are all normal expectations when you’re expecting, and even after your baby’s arrival into this world.

But what do you do if you find out that your child might face some challenges that could potentially hold them back from achieving some of your preconceived notions?

The answer is simple. Really, REALLY, simple. CHANGE YOUR EXPECTATIONS.

I too had these visions during the long and wonderful wait for my daughters arrival. I expected our first six weeks together to be an uninterrupted time of bonding while I was out on maternity leave. Instead, fate brought us to a NICU unit for the first three weeks of our lives together in the pursuit of a hole in Mia’s lung to repair itself. It did, thankfully, requiring no surgeries. And somehow, even in my moments of complete hormonal imbalance, I CHANGED MY EXPECTATIONS.

No, this was not what I had planned or hoped for. But being there, by my child’s side for the duration, still helped us create a bond that is strong to this day. A bond that tempts fate, and instilled early on that I would always be by Mia’s side. No matter what circumstances came our way.

Mia, two years old.

This beginning, this hard and testing start, was just that. A test. For several months later, I would be given news that would again require me to change my expectations.

News that involved Mia’s diagnosis of Tuberous Sclerosis (TSC), followed by Autism and Epilepsy.

All of this meant that Mia’s life could be drastically different from the one that I had previously imagined for her. TSC meant more doctors visits in a year then most children would be going to in three years, and potential health hazards as a result of the condition. Epilepsy meant more of the same.

Autism could have had it’s effects on her development in a multitude of ways, prohibiting her from communicating, engaging in social interactions, making friends. and even living life as an independent adult.

Yes, all of this was hard to digest, and to different people it could be perceived in many different lights. But for me, the only way of looking at it was, what other option as a mother did I have than to put a positive spin on the scenario for the sake of my little girl? I looked at the challenge with a serious game face (and a ferocious growl), and………….CHANGED MY EXPECTATIONS.

I still wanted Mia to grow and succeed as an individual, what parent wouldn’t? I still dreamt of her growing into a perfect and unique being, one un-replicable by any standard. I still had visions of her making friends, and having play dates. I continually longed for the first steps, the first words, the first “I love you’s”. The hurdles we were going up against just meant that it might take a bit longer for her to get there, and that her ability to express herself because of a lack of words would be substantially different. So I changed my EXPECTATIONS of the time table of when these accomplishments might play out, and of how we would continue to bond in the face of communication barriers.

Mia, four years old.

So, in order to help her along, I changed my expectations according to what Mia could do in the NOW. Not what I hope she'll do 20 years down the road. I knew that she had the potential to be interactive with those around her, so I  EXPECTED that, and then did the work to help her achieve that. I wanted Mia to talk, to be adaptive to any situation, to learn to express her feelings, so I EXPECTED that, and have worked hard to help her along. 

Because of this change of expectations, I grew stronger and more sure footed as a mother. I found a great many ways to connect to this little girl of mine on a level that many parents will never connect with their typical child. I worked around her challenges, prepared for every scenario we had to encounter, and continually gave Mia the new experiences and opportunities that every child deserves.

Six glorious years later, Mia has grown into a unique, bright and sunny dispositioned little girl. Always wearing a smile on her face, even in her toughest moments, she is a beacon of hope, determination, and inspiration. She SHOWS her love and affection in ways that the words “I love you” could never express. She greets anyone that crosses her path, child and adult, with big smiles, eye to eye contact, and a laugh of pure joy as she finally knows that she’s being seen and accepted by all around her. She walks through life with such a strong force of positivity, that it creates a gravitational field of warmth and enlightened energy that others can’t help but be drawn to. Always up for an adventure, Mia can handle any situation with confidence and pride as she goes here, there, and everywhere by mom’s side.

I had no idea six years ago that in addition to changing my expectations to match Mia's abilities, I was also creating a positive energy and an "anything is possible" way of thinking for both of us. This way of being, this way of living, has become a powerful force in our lives. I know now that without my choice to expect what is possible today, and leave tomorrow for tomorrow, and my consistency in engaging her in the world around us, she would not be where she is today. Thriving, living life to it’s fullest, and extending compassion and hope to all who cross her path.

Changing an expectation is merely a realization that anything is possible. You might just have to go about it a little bit differently, and it might take a little longer than anticipated. But in the end, the added effort is well worth it.

Mia at her pre-k graduation, six years old!