When I first met Sonya's neurologist she told me "I am not an optimistic person, I am realistic". I remember telling her she would be a great fit for us; as Sam is the optimist, always on cloud 9, and I am usually the pessimist, always expecting a shoe to drop. Since Sonya's diagnosis, my perspective on a lot of things has been altered. I would now consider myself a cautiously optimistic person.
Lately I have been giving some thought to what the future could look like for Sonya. I always put on my "hope goggles" and I can see her meeting different milestones. The visions are typically blurred images of her so they do not represent a specific age/time, just that she is taking her first steps, saying "mama", "aba", and of course "no", that she is communicating, and she is playing with her siblings. The hardest parts of my visions are the ones that happen when I forget to put up my guard. The ones that creep in when I watch her two older sisters dance and for a second I picture all three of them in recital outfits, and sharing this love of dance as a common bond. Then as quickly as that thought poppoed into my head, the unwanted, more realistic part of my brain screams "Realistically, Sonya won't be dancing. She most certainly won't be invited to company tryouts".
It is with those types of thoughts that I feel the tears swell in my eyes as well as the punch to the gut. I have to take all of my energy and shift my focus to how I am going to make sure ALL my children will reach his/her fullest potential. I can say undoubtedly that Sonya will reach her fullest potential, whatever it may be. As I have stated numerous times, she will have every opportunity that is out there that can make her life even a smidge more enjoyable and better for her. But, are we making sure this is the case for her two sisters and brother? It is interesting the ways that a special needs child can invade your thoughts.
All of Sonya's siblings have been in many activities. Swimming, music, gymnastic, dance, ice skating, whatever Phoenix has to offer for their specific age, you can rest assured a Zaila is enrolled. They are given the opportunity to find their niche, and if they decide they want to pursue an activity with more commitment, that choice is supported. Regardless of logistics, we make it happen.
The following three questions have found a way of penetrating my brain:
What happens if there are limitations to allowing an ability to flourish? What happens if those limiations are imposed by me as a parent? What happens if me as the parent is holding back my children?
Before Sonya I never really looked at our parental beliefs and decisions as holding our children back. When her oldest sister began dance, I specifically chose a dance studio that held their end of the year recital on a Sunday just to ensure she wouldn't miss it. She has missed dance classes due to Jewish holidays, and she has missed plenty of performances due to them occuring on Saturday's. It was always a bit sad for me that she was missing out on these experiences, but at the same time, this is life. Sam and I have chosen to live a religious Jewish life and so there are certain obligations we have to follow. But now, my philosophy on life has been altered a bit.
Our oldest has the opportunity to try out for the company team at her dance studio. The problem with the company team is they have competitions on Saturday's. We can make a request with each venue that the team perform before or after the Sabbath, but nothing is gauranteed. So I am left with the following thought. "Sonya was born with a deficit in which her fullest potential will not allow her to be on the company team and here I have a girl where I (her own mother) could be preventing her from possibly reaching her fullest potential all because of religion".
I think as a parent in general we all worry about making a decision that may have a negative impact on our child(ren). How do we balance our philosphies with theirs? How do we make sure we provide them the best opportunities while still being honest with ourselves? How do we ensure we allow our children to tap into their potential while not going against our beliefs? I guess in a nutshell, how do we compromise as a parent? How do we ensure these are truly compromises?
Maybe our oldest won't make it onto the company team. Maybe she will. Maybe she won't love dance as she gets older. Maybe she will. Maybe she will want to go Juliard. Maybe she won't. I could spend my day writing "maybe this", "maybe that", but the truth is, I won't know the answers to any maybe until they are no longer a maybe. No matter what her choices are, no matter where her life takes her, what I do know, is I have to find a way for her to reach her fullest potential.