Tuesday, September 10, 2013

Carving a Path

This past weekend, we celebrated the boys' fifth birthday. After all the festivities, I went out to the bayou to take a jog. With all the cake and birthday goodies, it was time to get back on track and burn some calories. But I ended up walking instead of running, blaring the headphones, and thinking about the past week or so. Time to clear my mind. I looked at my calendar and realized that the day before yesterday was the anniversary of David's injury.  It was the second darkest day of my life. The darkest day was when Hurricane Ike hit, David was in a coma, and the NICU was moved to a basement run on generators. I can easily jump back to that time and the images, smells and sounds return.

It has been five years now, and I've seen and read enough. As much as I want to do everything, I have to pull myself away from the multitudes of things I want to provide for my boys. I need to have alone time to regroup and recharge. It is against my nature, but worth it to stay grounded. The past years have been a head trip of darkness, joy, horror, anticipation, grief, relief, facing fears unexpectedly, and learning.

It has been quite a ride and now I feel like a cockroach--I just keep going. Our family has taken some hits and witnessed some scary stuff. I've watched my son survive things that would bring a grown man down.  

It is necessary to find a way to clear your mind and be still. I was reluctant after David came home, to do this. We jumped into every therapy possible for him, including an intensive program that involved 200 activities a day. You read that right: two hundred. Plus. The boys' pediatrician would express her concern about me getting time to myself. I didn't want to hear it. I wanted to get David better. There were times when I became despondent, usually after pushing myself too hard chasing after whatever approach for recovery I could find. We had a nanny that used to say, "I'm a machine." I admired her work ethic, as it was similar to mine. Sometimes the machine phrase became my mantra. The difference was, she went home at the end of the day. I was a "machine" 24/7.

It wasn't until we discovered the Anat Baniel Method that I started to slow down and get real. ABM has helped David tremendously and given me a deeper understanding of the brain. I am able to notice the emotion I am experiencing and continue to notice it, instead of reacting to it. The resulting ability to be objective has been invaluable.   

This objectivity is an adaptation. Innately, I can be quite sensitive. Not good when there are headlines like the one on Time magazine, challenging, "Are You Mom Enough?" For a special needs parent, this could also translate into, "Are You Advocate Enough? Are You Therapist Enough? Are You Researching Enough?" Essentially, " Are You Fighting Enough?"

I can't stop thinking about the Kelli/Issy Stapleton situation. Our stories are different, but regardless, there are things that unite the community of special needs parents. The daily and prolonged stresses add up. Traumas have lasting effects. Fighting medical and insurance entities can be soul crushing. Chronic isolation can be a recipe for madness. Stares and comments from people when you actually do get out in public takes a toll even if  you mentally prepare yourself for it before going out. (The process of getting out merits its own blog post.) Then there is the well-meaning advice and news about "cures" that people have to offer.

There are some comments on the Stapleton blog, related articles, and on some of the special needs boards I follow that are just devastating. Frankly, some are just brutal. This only adds to the pressure felt by parents traveling a path that they may not have expected. What we need is more compassion and more empathy.

It's the little things. Things you can do that require minimal effort that can make a difference for a person dealing with tough issues. Tip the Sonic guy, let the person with a few groceries go in front of you, let the crowded car or shopper pass, open a door for someone. Smile. These are easy things to do and cost nothing. You become the awareness this way--Someone may be a frown or a door slam away from their tipping point, or a simple courteous deed might turn the tide for someone having a rough time. I'm no angel. This message is for me as much as it is for you.

I'm trying to come to peace with the possibility that there are no answers for why things are they way they are. There are oceans of "whys." There are some things that I will simply never know. I only know that my family is my priority.

Sometimes I feel guilty that we are not doing ALL the therapies and I am not doing ALL the things I can for my boys. 

I know what is best for my family, and I endeavor every day to make it happen. What is it? Time together. Connecting. Not just with family, but others. Neighbors, friends, acquaintances. In this wilderness of expectations, controversy, media and technology, and crammed schedules, the best feeling is snuggling up with my boys.

Finding time for quality time is a challenge. When can we ever rest? I think parents are the pioneers of carving out paths in the new wilderness we have created for ourselves as a culture, because for most of us, we have the best interests of our children at heart. It is up to us to decide how we do it.

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