I've been reflecting on why I was having
a harder time coping lately. I realized I needed to acknowledge and come to terms with a couple of things.
I hate seeing Caroline struggle but I don't want to change who she is.
Caroline is trapped in a body that won't respond to her brain. The reality of
apraxia is so senseless to me. Caroline is unable to walk or stand without assistance. Putting one foot in front of the other is an an incredibly challenging and almost impossible task for her. Caroline has lost the ability to say words and use her hands. Her only communication tool is eye gaze. She is essentially silenced. I worry about the emotional impact of Rett Syndrome on Caroline. I worry about it every single day.
But I am
not sad that I have a child with special needs. The thought of diapering, bathing, and feeding her when she's 25 does not faze me at all. I also embrace our "different" milestones. There are plenty of wonderful people who will celebrate them with us! Being Caroline's mother is the biggest source of pride in my life. Some may wonder how I can express the feelings in the above paragraph and still feel lucky. I'm not sure how to explain myself except to say that I see Caroline for the unique and awesome person she is. I don't feel that I'm missing out. How could I? This is my world and there really is no point in drawing comparisons of any kind. I do, however, feel increasingly uncomfortable with assumptions that there is a reason for me to feel bad around typical children. At this point, I feel that those who think that way don't understand or appreciate Caroline.
Circumstances have changed and I've changed.
The main change I've experienced is my impatience with unsolicited and unkind remarks, especially around Caroline or my parenting. I used to be able to let things roll off my back, but our situation has forced me to be more protective. I'm much more willing (and unafraid) to set boundaries.
Those who know me well know that I've always had a tendency towards being polite, quiet, and conflict-averse. I would compromise my feelings or put myself last in order to avoid "rocking any boats." Unfortunately, those traits send the wrong message. They are regarded as the equivalent of being a pushover or lacking intelligence. There is no room for being passive when you have a child with special needs. Nothing comes easy. We have to constantly speak out or fight to ensure that our children's basic needs are met. Having a child with a disability forces you out of your comfort zone. Ready or not, parents are turned into advocates overnight.
I recognize now that I was having a tough time reconciling the "old me" with the "new me."
I want to take this opportunity to express my gratitude for all the kind words of support I received after sharing my feelings a few weeks back. They meant so much and helped me a lot.
For now, I'm dusting myself off and moving forward again.