The dilemma

 It's not that I don't want to write about the kids, my experience with the kids, get the release from putting all these crazy emotions on paper.  I know it would be helpful to others, especially those that care about us, have kids with special needs and selfishly, this would also help me, boost me, give me purpose, have goals outside of getting out of bed yet again. Where I am struggling is the feeling that I have to explain "what happened?" Meaning, what happened to the kids. Why are they disabled?  What's wrong with them? Or worse, what did you (me) do to cause it? These are the questions that people want to know and I have no good answer for them, not only that, I don't think they are something that happened "to me" or "for me".  It really has nothing to do with me.  They are human beings that happened, that were born, just like everyone of us that draws a breath.  And yes, they are a gift and a burden-arguably just like every other child. And in the deep recesses of my brain, I worry I caused this, it's my fault. My fault for what? To help create the most genuine, wonderful, kind beings to walk amongst us. Am I so arrogant that I usurped God's creation. It was me, not her? But again, then that goes back to the thought, the fear, that awful part of me, that believes something is inherently wrong with them.  That I want them changed, different, more like your kids?  Do I?  This is the reason I am struggling to explore my deeper feelings and why I just let people see where I am just below the surface, but only there. What if deeper is dark and ugly and ungrateful and wishes that John and Elizabeth were "healthy" and played sports, and got B's,(sorry, what, oh yeah, A's) and went to college? What if I am mean and judgmental and want a new life, a fair life, an easy life? What if I am too tired one day to keep doing this because it will never ever change, only get harder?  What if, what if, what if? So you see, these are topics that are kind of tricky to tackle when you are in the trenches with children/young adults that never grow up. 

Also, I'm struggling with the 'best mom" comments. I am not even close to the most average mom. Please don't comment that I am. I love and protect and care for and change and rinse and repeat and you would do it and don't say you wouldn't.  I don't advocate like some, I don't volunteer like many, I gave this writing thing a go and its been yet another another epic fail.  I am trying to keep everyone alive and get through the days, knowingly, I have zero control even over that. Yes, nice encouraging words feel good, but also I don't believe them to be true so I'm surely a fraud. It's like the "imposter syndrome" I keep reading about.  People think I'm good, but I'm not, and if they knew me, the "real" me, they'd know.  Know what, who knows?  Crazy Mary holds a special and big part of my neurotic brain.  

We say we only want our children to be happy. Well, that's a laughable lie. Because if that were true, I would be content forever. I arguably have the happiest children around, but we all know that just isn't the case. We want them to be accepted by their peers, safe, cute, liked, have a "gift" or a "passion" that will make us and others proud. We know now that they just want to be heard and seen for exactly who they are, but we are so wrapped up in what we think we want for them, we can't see the forrest for the trees.  Is that the analogy? I don't know. Anyway, those are the parts of myself I don't want to look at, explore, admit. Are those the things I wanted when I became their mother?  Are those the things I still want, but will never have? Have I dealt with feeling of loss of a child that "might have been"?  What kind of monster asks these questions?  

It's a lot. That's all the admitting I can do for today. Are you really sure we want to hear more and am I capable of giving it?

This is us

                                                             

Mourning the living

 

Will I ever smile again and mean it? Will the world ever be right side up? How do people just move about in it, it’s as if they don’t know or care? It’s so strange? It’s odd to be the only one suffering. It’s even odder to think that I am. 

I can’t believe time keeps moving. Games, dances, parties, as if there are things to celebrate!  Children are so easily  going into adulthood and college and jobs, how, how, how! Was it too much just to ask for the laughter and the smiles and the easy disposition? Of course it was, it’s always too much to ask. As if I deserved it to be easier or manageable. I now must live in the undeliverable, in the unknown, in the abyss. There’s no where to go. There’s no up anymore, nothing tangible to hold onto. 

Is this the bottom? I can’t sink any lower. I must  sit here and know this. The awfulness of grieving the living. 

Yesterday, yesterday, yesterday. It wasn’t perfect,  but it was doable. I could do it. Today, all of the sudden, doable feels like catching the wind. Will this fear ever subside? Can the new normal spare me this sorrow; I’d take his pain, but it’s not possible. I’d absorb him into me and carry it, I’d do anything for his suffering to cease, even ease. How can I make it so? How can we know the unknown, how can we move forward? 

Was this how it was going to go all along? No warning, no sign, just the disappearance of a young man, locked even farther into himself, his very person stolen. I sleep only by the grace of alcohol induced blackness, but when that fails I am awakened by  the nightmare of roaming room to room, searching for him, but never ever finding him.  Or worse, seeing him on the floor seizing, barely breathing, even with tools that I have accumulated from another epileptic child that are of no use, that are of no help, and so I can just watch in agonizing despair as my child suffers. And it plays over and over in a mind that is already depleted. 

I miss the son I’ve never had a conversation with but knew like my own reflection in the mirror. Now the mirror is a hole, deep and dark and there’s nothing staring back. How did it break? I long for the silly laughter, arm around the shoulder, long walks, a predictably uncertain future. 

I didn’t get to check all the boxes and help build a nineteen year-old that the world accepts or even tolerates, but to me he was perfect in every way that really matters.  Where did he go, how do I find him, heal him? 

Whomever described having a child is like having your heart living outside your body, must’ve had a child with needs that are vast, because my heart in all of its shattered pieces lives somewhere else and I can’t find the broom to sweep it up and tape it back together. 

I used to be the person that counted my blessings, knew it could be worse, was grateful everyday. That worse case scenario keeps a grip on my chest that feels so tight my heart couldn’t live inside me anymore even if it tried.   I am no longer the mom I was trying to become,  and I wouldn’t recognize her if she came knocking.  She seems silly to me now, someone who was reckless in her faith, silly in her hope, ridiculous in her joy. 

A fool. 

This is not a cry for help, for there are no more tears to be shed.  This is acceptance, resignation and description of a boy’s life seized and a family changed.