On sadness
The sadness is persistent. A dull ache which never leaves my soul completely. When I watch you with your child; jumping on a trampoline, or hiking a mountain, or casting a fishing rod into the river; I'm sad. Rest assured, I'm aware of my selfishness in these moments. And I mean not to steal from the joy you feel with your child; only that I can't help but feel a twinge of pain.
I am saddened when the world presumes that I NEED another, "healthy" child to feel fulfilled as a parent. The insinuation that my child isn't enough; that he's only "partial"; is constant. And I often have two choices: to begin conflict with many of the people I know and meet; or remain silent. I usually remain silent. But in my silence, I internalize it. I look at him and wonder how I can see something so different from the rest of the world. At times I even hate humanity. That's not a positive front, but it's true. I question why people refuse to see the beauty in his difference.
And then I look at his body. Honestly, his little body is a mess. A surgical scar here and a contracture there. Very few of his systems function as science has determined they should. I see this, and the dull ache is suddenly sharp.
On grief
Grief. It's much different than sadness. Those of you in similar situations can understand this. Grief is being lost in a dark cloud and always seeking your way out, yet never finding it. It shadows so much of our lives. It is present at every missed opportunity and experience. For me, it presents when I hike a mountain and take in the beauty of the world in a way that I know Javier never will. For the missed birthday party invites. For the missed sleepovers. For the missed carnival rides. For the shortened life span. In anticipation of the missed first dates, missed sports teams, missed college, missed children.......in anticipation of it all. I grieve for the life that he will miss. With the knowledge that no matter what I do, there are simply things he cannot do (see end-note).
On hope
Hope is my favorite life choice. Some call it denial, but I think they are wrong. Because without hope, I cannot get out of bed tomorrow. Without hope, I cannot continue to ensure that Javier and I live an incredible life together. Call it what you want, but that's what keeps us strong.
Hope rises from deep within me, when I look in to my sweet boy's eyes and see the reality of life. Javier has daily physical pain. He recognizes that he is different from his peers; that they can do things he can't. He understands so much but is given credit for understanding so little.
That being said, he greets each day with a smile. A HUNDRED SMILES! Those smiles overwhelm me. And at those times I realize that life is just that: A series of moments. Special seconds spent together.
I am sad and afraid at times; but he remains a jovial warrior of life. He hates none and loves all. So I carry on through my sadness and grief to give him every second of the life he deserves. We camp and fish and hike and laugh and enjoy each moment as though it is our last.
And at those times all the pain melts away into a moment which makes life worth living.
End-note: Javier and I oppose any form of pity for his disability and things that he cannot do. We believe that many of the things he can't do are the product of social institutions and of cultural beliefs. This post is intended to only reflect my personal feelings and is not to retract from the independence of all individuals living with disabilities.
