to be seen…

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Can you just see me for a minute?

Not my face, not the outside of me…not the funny memes I post or the inspirational quotes.

Me…

The real me.

I just need you to know that today is one of those days, where I am tired, mentally and physically. I managed to get a few hours of sleep, and then I was up and down the rest of the night. No different than any other night. A few hours here and there. My baby boy crawled into bed, not feeling well. The dogs ran in and out of the damn dog door, creating chaos over imaginary images they needed to protect us against.

I went to lay on the couch, but Matthew called for a sip of water as soon as I dozed off…Then a few hours later, he needed another one. I stumble around, trying to reach for the urinal, helping him, as my eyes close out of sheer exhaustion. Trying hard not to spill it back on him, as my body sways, eyes burning from exhaustion
.
The couch hurts my back, but there is no room on my bed with a growing boy who kicks and squirms throughout the twilight hours.

My alarm buzzes my arm at 6 am.
I talk to myself.

Sometimes, I count down the hours.
“I only have one hour before the kids go off to school.”
“What can I put off for tomorrow or next week?”
“Why is the coffee not kicking in?”
“How soon can I go back to sleep?”

I ignore the pain in my back, and the pain that is back in my wrists again. My stomach is hurting, but there is no time to be sick.

Can you please just see that I am trying?

I feel like an imposter most days. Smiling when I feel anything but happy. How can I keep doing this? How long can I keep pushing?

I need my children to keep a sense of normalcy in their lives.

Dinner, homework, chores, sports, friends.

Normal happy memories to remember.

Make sure that Matthew doesn’t feel like a burden. Even though he wants to lay back in his wheelchair, needing pillows fluffed, blankets and heaters…three times throughout the day. Stop what I am doing to help him..again. Please don’t make me go back in there again. I try to keep the irritation from my face.

I don’t want to fix dinner…

Pull the chair up to the table and dish the food into his mouth. Don’t spill. I just showered him. Ask him what food he wants, which bite of what food he prefers. Be aware that he should still have a say in how he eats.

Ask the kids what they are grateful for…remind myself to do the same. Find things to be grateful about. I have a good life. I have many things to be grateful for….so why do some days feel so heavy?

Don’t eat what he is eating. Those damn twenty pounds refuse to budge. Of course, its my fault. I am the one who drinks the wine, finding a momentary bliss of numbness with each glass that goes down so easily and I am the one who sneaks the bites of food that he is craving…food I would normally never buy on a regular basis, but now have to because he craves it. His jaw is slowly weakening. Let him eat.

Someday soon, he won’t be able to.

I didn’t make it to the gym again. I used to love to get up early and go. But it feels like one more thing on my to-do list. My body hurts.

I am lonely. I am lonely for conversation. I can’t remember the last time I sat and talked to someone for the enjoyment of just having that back and forth. I am lonely for companionship and to be touched. I miss having freedom.. To go to bed without having to first put him in bed. To get up in the morning, and to come and go as I please. To join girlfriends for drinks in the evening, without having to plan weeks in advance. To dance! I miss dancing. I miss laughing so hard I snort. I miss so many things.

I am worried. How much longer can Matthew stay strong. How can I keep my irritation at bay, that he has no one to talk to, or visit. How strange that he sits there, day in and day out, all alone, watching tv or facebook. He doesn’t lean on me either. I think because its easier to ignore it than to address it. I try to remember that it’s been almost 5 years. Life goes on…well, for everyone but us.

It does no good to talk about ALS, or how it is to manage it, if I can’t be real about the actual struggles of dealing with it, every day. What is the point of social media, or writing at all.
I don’t assume that my struggles are any more difficult than the next person’s. We all face unbelievable adversity; challenges we never saw coming or could possibly prepare for. But today..today is just a bit heavier than most for me.

And I needed someone to see me, the real me…for just a minute.

And I need to see you; the struggles you are facing, and to know that I am here in case you need to vent or need a friend to lean on. Because honestly, what the hell is the point of this thing called “life” if we have lost the most important connection of all?

To be seen..

 Matthew Wild

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