Two Topics, One Post — and a warning about profanity

Okay, so two things to get off my writer’s chest today.  And we need to get something straight from the get-go.  There will be profanity in this post.  And a lot of writing about God.  Yes, it seems paradoxical, perhaps, to so easily combine the two, but masks are about to come off and things are about to get real.  You may want to be prepared — or at least have the choice to close this out and pretend like you’ve never seen it.

As I’ve shared in my “About Me” page and the title of this blog.  I strive to be a great wife, mom, teacher, friend, daughter, Christian, etc., etc.  (The list can go on and on.)  However, the reality is most days I suck.  I try to juggle too much and I can’t keep it all together.  And when I do manage to juggle well, I do it with a ….. ugh, this is hard to admit … a bit of a martyr complex.  I yell.  I forget.  I lose my temper.  I say “woe is me” (not really…..who really talks that way?) My house is a disaster.  My life is utter chaos 90% of the time.  I’m so not a Betty Crocker, Martha Stewart, Sally Homemaker.

Today’s first topic isn’t really about a first….or a last….or anything that I’m happy about.  However, it is directly related to my failure.  And, forgive me, but it is really personal.  So why share it?  One, because I deal with things through writing.  I process my life, my thoughts, my inner being through words on a page…or screen. And honestly, some things I just can’t talk about.  They are too emotionally charged, but I can write about it.  This is one of those times.  Cannot talk about it.  Will be a puddle of mush if you force me to. So don’t do it.

Secondly, I hope that some mom, wife, dad, husband, son, or daughter out there may read it and totally identify and realize that they are not alone in their screw ups.  Because all day today I’ve felt like the biggest failure in the world.  I’ve felt alone in my fear and failure.

As I’ve written before, my husband and oldest son have a rare medical condition that makes them susceptible to aneurysms and a variety of vascular complications.  Our son has a dilated aortic root at his heart.  It’s at 3.3 cm.  Doctors tell us they do elective open heart surgery at 4.0 cm.  He is on a wonder drug that prevents the dilation from growing. He must take it every day without exception.  Not taking it means the aorta can grow and stretch unpredictably to the point that it can be life threatening.

Nearly every day I ask him before bed, “Did you take your heart pills?”  And every day I hear, “Yeah.”  But I had a bad feeling.  The medication is refilled every three months and I knew it had been a while.  So today I asked him to give me the pill bottle.  I counted every single pill in it. Every. Single. Pill.   As I counted pill after pill, my heart sank.  I felt nauseous.  Tears welled up.  He has not been taking his pills.

This is not a situation where I can simply nag and say, “You were supposed to be responsible enough to take them.”  This isn’t homework for Christ’s sake.  Grounding him seems so stupid…..we’re talking about his life here.  And me.  I should have checked months ago.  I should have given them to him every night.  I shouldn’t have trusted something so important….so lifesaving to a 13 year old.  He is only 13, after all.  And teenagers lie.  All teenagers lie.  I know this.  I’ve taught them for more than a decade.

I had no words.  Just an abyss of fear.  I totally went all psycho, ugly crying mom on him.  I ranted.  I raved.  And then I calmed down…..just a little.  I explained that he wasn’t in trouble.  This wasn’t about being in trouble.  This is about his life.  This is about I cannot breathe when I think about a day without him.  I literally begin to hyperventilate.  And then I hugged him, and hugged him, and hugged him some more.  So much so that I probably left the scent of my runny mascara on him even now 12 hours later.  And then I shot out an email to his doctor.

She explained that we shouldn’t beat ourselves up because many parents have trouble with getting their teens to consistently abide by a medication regiment.  But I do beat myself up….or maybe it’s less beating myself up and more being swallowed whole by fear that sucks the life out of you.

I have prayed for all kinds of things today…..forgiveness because God gave me this incredible human and I failed to stay on his ass and make sure he took that medicine.  Health that God would intervene and protect that little heart and aorta of his.  Grace so that I can forgive myself.  Peace until our next echocardiogram because me being a basket case isn’t really conducive to being a mom, wife, and all the other responsibilities I have.  And while I was at it, I had a few choice words because I am so pissed my son and husband have this disorder.  He created them….every little DNA strand….every genome…..and it would have only taken one little change to keep my baby from having this terrible, awful disorder that requires a 13 year old kid to remember to take life saving medication and ward off open heart surgery.

I’m really glad God is big enough to handle me being pissed and begging for forgiveness and blessings of health on my child all at the same time.  I remember a time when some adults would teach that we shouldn’t question God….that we should just basically blindly smile and nod and say thank you and proclaim how wonderful He is even when terrible, sucky, shitty things happen to you or ones you love.  I am so glad that I know now that my questioning and being angry doesn’t shake the sovereignty of God at all.  Not one little bit.  I’m glad that He will not reign balls of fire down on me or pout simply because I am mad that this has happened to my family.

It’s nice to know that God acts kind of like I did today — minus the screw ups and probably cursing — just hugging my E so tightly that he could barely breathe and telling him how very much I love him.  Telling him I would do anything at all to protect him and keep him from hurting.  Just saying over and over, you’re not in trouble.  I’m not going to punish you.  I love you more than life itself. It sure feels nice despite the day I’ve had to know this is how Christ handles me at this moment.

Okay….that second topic…..I let E back my car out of our driveway.  It’s a good story, but, honestly, my nerves can’t really handle that topic, too.  Seriously, reliving a reminder that my car insurance will likely triple in just a few years is more than my heart can take in one day.  Too much of that and I may need to sneak out some of my husband and son’s heart pills myself.

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3 thoughts on “Two Topics, One Post — and a warning about profanity

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  1. You are one of the best mom’s and teacher I have ever had the privilege of knowing and I’ve known a bunch between the two boys lol. Your honesty here brought me to tears as I sat here and thought how sorry I’ve felt for myself and then realized how lucky I was. I bet you’d trade anything in the world for it to be you going thru what Rick and Eddie have to deal with. My husband and boys are healthy and I praise God for that. There is nothing better than knowing that we have a heavenly Father that we can go to and fuss at and to and ab sometimes lol, we can go to him in tears, pity or despair, we can go to Him in anger and fear and He still loves us the pitiful undeserving humans that we are. In love and much respect and awe at the fun loving person you are with all you have to deal with…. Mary Ann

  2. I can totally relate to your struggles. My teenage son and husband also have Loeys-Dietz. I had to smile when I read about the pill situation, as the same thing happened in our house. Very stressful and worrisome. We have been through two heart surgeries this year one for both my son and husband. You are right when you say you just want peace between appointments. Our reality is very different than most but attitude is everything and as long as we never give up(and we won’t) every day is a gift! Things do not happen for a reason they just happen. It is how we deal with them that makes a difference in our families lives. My son just got his beginners drivers license your gonna need something stronger than heart pills to deal with that…..just sayin…. take care!

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