My life changed completely four and a half years ago, and transformed into something I can find so much beauty in now that the lens of nostalgia can be used. So much has been caught up in the day in and day out, that sometimes I couldn't see what was really in front of me.
Days upon days in therapies, with few supports made me strong. Every time I wavered, I looked to my daughter, and knew that if she could do it, I could.
The truth is, Luciana is the one who has it all figured out, and I am just lucky enough to be her mom.
More and more, she defines herself as a tenacious girl, who won't be stopped by anything. She can make friends with anyone, can blow all expectations out of the water and most of all, she can make just about anyone smile. She's more empathetic than even the most emotionally intelligent people, and finds a way to comfort just about anyone.
I think its because she's known no other life, and known nothing more than to trust herself. Her feelings are pure, unmarred by society, and that is something I know as a mother I need to protect. She will of course, learn disappointment, distrust and any other number of feelings that help anyone to build strong boundaries. But now, this is her gift, and she uses it beautifully.
It took me time to understand that though. My journey as a special needs mom, or the mom of a disabled child, has been rocky, like so many before me. Luciana is our "one and done" child, we know no other life, just like her. What is different though, is what society and community told me being a special needs mama meant.
When we got her diagnosis less than a year ago, I desperately tried to connect with other mothers, trying to understand what our future meant. So many communities focused on the trials and tribulations (which are understandable), and I fell into this pit as well. For months, I was saddled with the thoughts of what my child couldn't or wouldn't be able to do. My days focused on hyperanalizing doctors, therapies, play routines, trying to figure out how to "cure" my child from the trials that plagued her.
All this did was make me swim upshore against a current that was destined to end me.
I can't tell you what changed, a date, a time, a place, what I read, or what I didn't read, but something changed and I started to look at my daughter as she was. I accepted her limitations, and congratulated every time she surpassed them. I accepted her as she was, frustrating as it sometimes was, I just stopped caring about all of the things I thought defined her.
What defined her was much more than a symptom list or diagnosis, what defined her was the parenting her father and I give her every day, along with the tiny bold little person who we were called to parent.
There was such a drastic change for our relationship. More and more, we agreed on things, chores were done, space was made for feelings and we became synchronous as a mother and daughter. My expectations of her changed to only include things like, being kind to others, being polite, helping out with things that we as a family do, and learning to define and speak about her emotions. When I merely expected what was required of a tiny human, it all made sense.
I've doubted myself as much as any other mom, and I get it wrong a lot too. But every time I do, I learn what I have done through the tiny person following me around. Her reaction, her words, her offerings of kindness in my weakest moments have made me see the world in a light I can't put to words.
So, this is us, Luciana and I. I'm not going to get things right every day, and I'm not going to sugar coat when things went wrong, but this blog will focus on the positive. It will see the little moments of beauty and document them, so that one day, we can look back, and see the beauty that was there the whole time.
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