House of cards…

I like to think of this moment as if I were stacking cards.  Each card is a representation of a person, place or thing or thought, or situation.

When I imagine the setting, I am sitting at a table. A look of determination and focus on my face.  I am biting my lip as I stare intently at what I have created.  I’ve built the foundation, the bottom of the pile securely, and with each card I set on top, each layer that gets built, the more precarious it becomes.  I make sure every little thing around me stays far away from what I am building.  This is mine alone to build.

I’m still intent on keeping each card balanced.  I am still gingerly taking another card and piling them one on top of another.  I am so proud of what I have done.  With a bit of a smile, I turn my head ever so slightly, and exhale.  I grab one more card, and slowly, with steady hands, I reach to the top to place it to the next layer…they all begin to sway slowly.  My hand stills in the air, I feel the air catch in my lungs. I will the cards to stop moving. Maybe if I am completely motionless, the cards will become that way as well.

And just like that, all the pieces crumble…

That is exactly what happened to me yesterday.  It wasn’t just one thing that brought it all down.  It was a culmination of each card, placed just so…and then the last one was all it took.

I completely lost it.

One tear fell, and then another, and before I knew it, I was sobbing.  Gut wrenching sobs.  The kind that is ugly, red faced, snot running down my chin kind of sobbing.  And I couldn’t control it.  I walked as quickly as I could away from everyone, trying to find a place to hide.

I’m embarrassed and ashamed.  Now is not the time to have an emotional breakdown. My pile of cards are haphazardly all over, and all I can do is scoop them all up and try again.  You see, I began building this wall and trying so hard to build it perfectly.  I can’t even describe it in words.  It is literally a culmination of everything, and suddenly, every emotion that I try to stomp down, deep inside, came all to the surface at once.

There have been a few times that as I have built this house of cards, a few have fallen.  Yet, I have managed to quickly repair and rebuilt.  I don’t think about it, I don’t get discouraged.  I simply grab a card and keep going.  Yet this time, the entire thing has fallen apart and I cannot stop the overwhelming amount of emotions that are flooding through me.

I am angry.  I am angry at Matthew’s friends.  I don’t want to load my husband up into a van and drag him around to everyone so he can spend five to ten minutes talking with him.  I want them to want to come visit him.  I want them to realize that it means so much more when they make the effort to come to him, because that effort is getting harder for him to make.  I want them to offer to come take him somewhere instead of me being the chauffeur and the one who has to plan around their schedules to accommodate them.

I am unbelievably irritated when I see Facebook posts of his family and how their lives haven’t changed.  They still go out on the lake, downtown, or anywhere they want to go. No one asks me if there might be something I might have liked to have done. No one offers to come over so that I might make plans.  Or when I find out that family are in town, but have never once made the effort to swing in for even a minute.

I am beyond hurt that I can’t think of one time this summer where anyone asked me if there might be something I might like to do with them.  Where are these friends that I supposedly have?  Because I see them all out doing their thing, but I certainly never got an invite.  Or I get an invite in a future reference, a ” We should do this…” but time goes by and I see them all out doing it, yet I can’t help but wonder what is wrong with me that they never even bothered to see if I was available.

I am bitter when I see other kids getting to have time out on the lake or adventures with family, but my children were not even a thought. I have to plan to do anything with my children.  There is no more spontaneity in my life.  Everything has to be planned in advance.  Heaven forbid we inconvenience anyone else without giving them proper notice.  And heaven forbid their other parent actually step up and be a part of their life.

I am irate at the fact that everyone wants to act like they are there for us, but no one has ever asked me what I need.  Why should I have to ask?  Really?  Can’t someone just step up or show up, look around and think, wow, maybe she needs help getting the kids to an activity, or maybe she just needs a break from her reality for a while.

Then, I feel guilty.  Guilty for feeling the bitterness and anger.  Guilty for hating their ALS-Free lives. This is no one else’s problem, so there is no reason to involve anyone else.  I am glad everyone else’s lives have gone on.  I don’t want to burden anyone else.  I know Matthew doesn’t want to be a burden more than he has to be.  But somedays, I don’t want to tell everyone how great we are doing. Somedays, I want to scream that I don’t want to pick his nose one more time that day.  I don’t want to be the one rolling him over in bed, or getting him dressed and showered, or doing all the little things I do, day in and day out. I don’t want to talk about poop, or how Matthew won’t eat all day in most cases if we leave the house, in case he needs the restroom. I don’t want to worry about whether today is the day we finally go to the hoyer lift full time or if his cough means he won’t be able to eat or breathe soon.

I spent most of the summer finding my happy in my every day.  No matter how mundane.  When I would feel upset, I pushed it aside.  Don’t get upset, find things I can still be grateful for.  And I did a pretty good job of it.  Until I look around and wonder how my life got to this.  How did I become the sole provider and caregiver for three children and a terminally ill husband?  How am I suddenly responsibly for everyone’s happiness and health and well-being?  How did I get to be the adult in charge?

I worry.  I worry every day.  I can’t turn it off either.  I worry about how this is effecting my kids. I worry about the events that are out of my control and how they are impacting my children’s lives.  I worry I am not doing enough, trying hard enough and that there is only me, and that that will never be enough.

I stress about whether my house is clean enough, or if my garage is organized enough now.  I have panic attacks that my car isn’t clean enough, or that if someone stops by, they will find fault in what I am not doing, and they will tell everyone what a failure I am.  Then I immediately get angry that I would dare let someone have that kind of control over me.

I wonder when things are going to get really bad.  I don’t say “if” I say “when” because that is the reality of our situation.  “When” things get bad…”When” Matthew gets sick, who will stay with my children? Who will try to keep their life as normal as possible?  There is no one that has built a connection with them or a bond, and I am expected to ask for help from the very people who don’t even make me a consideration.

This is the rabbit hole.  This is where the guilt and the shame compile on top of the anger and the bitterness and the jealousy.  This is where I want to stop feeling this way, but I can’t.  I don’t want to feel alone, but I am. I don’t want want to be angry at others, when I am probably just as responsible for not asking for help.  How can I make people understand that asking for help is one of the hardest things I will ever have to do in all of this?

I know tomorrow will be better.  That this constant feeling of needing to cry, that I can’t possibly handle one more thing, will be go away.  I need to fall down to get back up.  It’s just taking me a bit longer than usual to find my spunk again.  If it sounds like an angry backlash at those around me, then I suppose it is.  However, I also know that these feelings ebb and flow.  For that, I am thankful.  But I can’t help but wonder…

I wonder what next year looks like…

I wonder, I worry, I think…

I put those cards down, one by one, for each person, each thought, each situation that runs through my mind.  I built my house of cards.  And with each card, I kept telling myself that I was okay, that I was happy, that I am strong enough to get through this, and that I am enough.  I am enough for my children and Matthew.  I don’t need anyone else, I can do this…

Until yesterday when my house of cards came crumbling down.

Tomorrow…..tomorrow I will pick up my cards and start building again. I need to be okay with that.  I need to let all these emotions go, but some days, its like an additional bag I carry around with me. The only solace I have is when reading the support group posts.  Then I realize I am not the only one who feels this way. I am not the only one.  I get a glimpse into other peoples’ lives who have it much worse than I do.  So, I hang my head in shame, feel guilty yet again for feeling this way and I will make tomorrow a new day.

I will pick up those damn cards and begin rebuilding.  The only thing is that I know they will come crashing down again.  I just won’t know when…