apospasma tou theu

Pieces of this post have been sitting in my ‘draft’ for a couple weeks and I haven’t had the ability (i.e., nerve) to post it to the ItsDaddies.Plural site.


Over the past couple of weeks, we’ve been singing (and now signing) Rachel Coleman’s “Feelings” to Kensington. “What are you feeling? What are you feeling? Don’t keep it bottled up inside, just try, try, try. Try to tell me what’s inside. Do you feel [exited, silly, scared, grumpy, sick, etc]? Kensington loves it. When we put it on, her little head goes bobbing and her hands go everywhere like she’s trying to make the correct ‘sign’ for each emotion.

It wasn’t until the other night when Chris looked at me and signed, “What are your feeling” did I realize that I’m the biggest hypocrite in the world. Here I am teaching a one-year-old child prodigy how to share her feelings, when I’m a twenty-seven (shut up) year old that can’t do the same thing. Months of therapy (at $20 a co-pay each session) haven’t allowed me to open up, but that one moment opened up the floodgates.

I haven’t updated the blog lately because looking back over the year, while it causes extremely happiness that we’ve had Kensington in our lives, it also causes tremendous sadness. Why? Well the blog was just supposed to help our families learn about the process that we were going through, as well showing them the love that we have for Kensington, and the little lady that she grows into each day. It’s Daddies has become more than that. It’s shown my parents (Mazha and Fazha) the man that I’ve become and how I’ve grown since leaving Texas thirteen years ago. Yes, do the math; I was 14 when I left (hahahaha… Wendy Lou-Who, I still hate you for telling that reporter, years ago, my real age). I know that Mazha has become the biggest fan of the site, and with each post I publish I think of her and how she would react? That’s where the sadness comes in.

Back in September, Mazha was diagnosed with Amyotrophic Lateral Sclerosis (ALS). Before September, I couldn’t tell you anything about the disease other than Lou Gehrig was diagnosed with it. Now, I know more that I wish I did.

This disease has progressed rather rapidly in Mazha. In September she could walk. Today she finds it hard to even roll to the side while she’s lying down. In September she could voice her anger about the disease. Today, she was out of breath wishing me a happy birthday. She’s become so weak, next week they will be placing her on a feeding tube.

I have disconnected myself from the world because of this. I have engulfed myself with work and with Kensington to keep my mind off of reality. Kensi makes me smile with her endless peek-a-boo games… she makes me laugh uncontrollably with the faces she makes… she amazes me with her love for dance and music… and she melts my heart with her hugs and kisses. When I’m with her, I forget about all of the negative issues, except her stinky diapers, in life.

So, while I’ve been signing, “What are you feeling,” I’ve been avoiding answering it myself. You see, I don’t do emotion. Okay, I do, but I find that I focus my time on positive emotions: Love (affection, caring, tenderness, compassion), Joy (cheerful, playful, pride, contentment, relief, optimism), and Surprise (amazement). Something in me [what my Malaysian Spiritual Healer has informed me is my internal “firefighter”] has repressed – or protected me against - the negative emotions: Anger (envy, rage, disgust), Sadness (suffering, regret, rejection) and Fear (panic, tenseness).

I think this is what has kept Chris and I together for so long. We don’t fight. I may have a brief moment of being hurt, upset or annoyed, but within five minutes, it passes and I’ve forgotten about it. I’ve chalked it up to having a crappy memory, but my Sadhu informed me that this isn’t so. For me, negative emotion isn’t natural, so I have refused to experience it. I’m the one cracking jokes at a funeral. I’m the class clown that makes everyone laugh when they’re experiencing pain. Forever I thought I was doing this for them… now I realize it’s been for myself. This has caused me to ignore my friends, even those who are in need. I’ve ignored them because I can’t deal with the, “How’s you’re mom doing? How are you doing?” My general response has been, “Good, thanks” and I quickly change the subject or walk away. I haven’t been answering the phone, only responding to texts and email because of the same reason. For this, I apologize.

Today, I’ve surrender control. I can’t control this disease or the hate that I have for it. I can’t control the disappointment that I have for God. I’ve always been a very spiritual person, and have believed that our soul is apospasma tou theu, ‘a particle of God’. Right now, I have lost my faith in him. I don’t understand why there is this much pain in the world. I know that this isn’t something that just happened. Pain and suffering have existed since the beginning of time, but this is the first time that I’m personally having to deal with this type of grief and I don’t understand how it can exist, nor can I understand how it’s 2010 and there is not a single type of treatment for this disease. One drug… there’s only one drug out there for those diagnosed with ALS and it increases the length – not the quality – of life by two months. 60 days.

My firefighter that has spent the last 32, I mean 27, years protecting me, protecting me from the fear of failure has been another victim of this economic climate. He lost his job and can’t help me any longer. I feel like I have failed my mother by not being able to protect her from this horrible disease. I honestly thought I was strong but I’m not. I’ve given in to fear, and hate, and panic. Pieces of me have now experienced regret, humiliation, and envy.

It’s been my fear of experiencing these emotions that have kept me from posting anything. Actually, as I type this, I realize that it has been my selfishness as well. I’ve wanted to keep the positive, everything about Kensington – yes, even her stinky diapers – to myself. She’s what makes me strong. She’s what keeps me going through the day, knowing that the moment I walk through the door at the daycare (or though the door at home), she’s waiting for me with the biggest smile. Showing me all six of her pearly whites (which bit Chris in the arm last week, and me in the leg and shoulder today).