The Gift of the Present
Erik and I are making some serious progress these days in many ways. I hope that the people who come here, especially the quiet observers, can see the contrast between the past and present in my writing. At one point, I was actually living each hour at a time. Seriously. I'm not kidding. It was THAT bad.
When Erik first came home, I remember washing and folding his little baby clothes I received at my baby shower. Of course, most of them had to be set aside because he could only wear preemie sizes. The colorful outfits and ensembles I had unwrapped just had to wait. I had only one outfit that he could wear, so my mother sewed some little sleep gowns in cheerful fabric for him as well. I remember looking at the clothing in the next sizes up and wishing I could time travel to the point he would be wearing those little overalls and t-shirts. A time when he would be walking just before his first birthday. A time when I would feel like the mothers around me seemed to feel. A time when everything would be okay. Of course, things would turn out much differently. His diagnosis was still well over a year away. I hid it as much as I could, but I wasn't having any fun at all. Something wasn't right, and I assumed it was within myself. It was like being in the middle of a bad dream. I kept trying to talk to others about my feelings without sounding crazy. I was told I was either in the midst of postpartum depression or received a knowing laugh because I was just having a hard time with the normal stuff everybody goes through. That made me feel worse. In my heart, I felt nothing but despair. I even felt next to nothing for my new baby, although I knew how I should feel and was waiting expectantly for those feelings to come. I was going through the motions. Don't get me wrong -- I knew I had an important job to do, and I didn't question that for one single moment. I would be a good mother, do or die.
I just wondered if perhaps I would actually die doing it.
Yeah, it was THAT bad.
We have been through the ringer for the past four years. If I stop and think about it, being Erik's mother is more difficult than I ever could have imagined. For this reason, I just don't stop to think about it much unless I am writing here. That is why I still come here. There is a special kind of buzzing numbness that has set in for me after some time that allows me to complete my activities of daily living caring for my child with special needs. When this first washed over me, I couldn't feel much of anything at all. Now, however, I can easily feel selected emotions through it. I enjoy life from inside this thick bubble that surrounds me and protects my injured heart with a strange ansthesia that used to feel like a state of shock but is now quite familiar and useful to me. This is something I never needed or even knew about before but keeps me from shutting my front door and collapsing in a heap behind it every day. It's a blessing, but I am a little sad that I will always remain almost completely numb in places. At the beginning of this, I watched other WS parents live life seemingly so easily and wondered how they did it. Now I understand. It isn't easy at all, but it's definitely possible.
Erik is now a lanky, beautiful boy. His shining, blond hair is darkening to the color mine used to be. His strange, animal cries of distress in the night ceased long ago. The colorful sleep gowns and baby blue preemie outfit have been sealed in a box and seem like part of ancient history, like part of the most twisted museum exhibit ever. His development has taken another giant leap lately, which has allowed me to count my blessings once again (hence this post).
I am able to have real conversations with Erik. I don't have to look into his eyes and wonder what it is he needs or wants. I can just ask him. The answer is usually related to chocolate or playing outside. I asked him this morning if he would like socks on his feet, which regularly bleed due to his thin skin, and he answered, "Actually, maybe some other time." He rides his tricycle with ease and can eat like a lumberjack with the help of reflux medication, which I really don't give a second thought about anymore. His sense of humor is like mine, which tickles me to no end. Sometimes we both look at each other and laugh at something without exchanging any words at all. He is no longer a strange, fragile creature that wails nonstop and doesn't look at me directly. We have a real connection now. When he asks to cuddle and our noses touch lightly, I can see right into him through his lacy, blue eyes. He has a beautiful soul and seems to know mine quite well, too. His "disability" allows him to sense how I am feeling, no matter how hard I try to conceal my emotions from him.
These days when I fold clothes, I ache a little when I put the ones that have gotten small to the side. I don't wish the future would roll in faster anymore. Although I am hopeful, what's to come is too frightening and overwhelming to take in at once, so I don't look too far ahead and take a few days at a time. Besides, I'm much too focused on the child I have at this present moment. The one who amazes me every day with what he accomplishes, despite the fact things are sometimes a thousand times harder for him than they are for other children. Don't get me wrong -- we still have massive challenges. We still have really bad days.
However, my heart is in the game now.