Saturday, July 29, 2017

6 months

I can't believe it's been six months.  The first six months of the rest of my awful life.  I hate my life now.  Don't lecture me about that; your words really wouldn't matter.  I've learned a few things along the way, so here's some advice.

1) NEVER compare losing a child to losing ANYONE else.  While you may be able to empathize to some extent, you'll never get it.  And I pray you never do.

2) Talk about him.  Don't be afraid to mention his name.  Share pictures and stories.

3) Yes, I still cry at the drop of a hat.  And no, there's nothing you can do about it.  Just give me a hug and hand me some kleenex.

4) Little shoulders can manage a lot.  M doesn't seem to mind that the weight of my being is on her shoulders.  In fact, she's pretty much mastered the "make mommy smile" move.

5) The little things still mean the world.  Donating $10 to the Epilepsy Walk we are doing touches me in a way I can't express.  And for those of you who are local and have joined our team, you are now family.  I truly love you.

6) Don't expect an "I'm fine" to the how-are-you question ever again.  I'll never be fine.  And if you're going to ask, I just might tell you the truth.  But if I do say "I'm fine," that's a pretty good hint that I don't want to deal with it today.

7) If you think of something you'd like to do to remember him, please do.  Yes, I'll probably cry.  But sending me a wall collage of all of the important men in your life, including J, is amazing.  You don't need to ask, but please share with me.

8) I'm still trying to find my new normal.  I have a feeling it's going to be a life-long search.  But some things haven't changed.  I still have two beautiful children who mean the world to me.  I'd die for them if I could.

9) I'm sure there's more, but I can't see through the tears anymore.

Monday, May 22, 2017

Time Hop

Time Hop on Facebook is a double edged sword.  Not how I needed to start this week.

I love seeing all the old posts, especially pictures of my kids.  Not that long ago, a picture of M sticking her tongue out like Gene Simmons came up.  Can't help but smile at something like that.  And shortly before that, I got to watch a video of J bouncing.  God I miss that.

Today wasn't as nice.  Showed a post from seven years ago.  Talking about J's first seizure the day before.  That was what started this whole nightmare.  I remember it like it was yesterday, literally.  M was in the hospital; pneumonia I think.  Nurse Mandi was in her room with me when I got the call from the kids' dad.  J had collapsed and started shaking.  I immediately said he needed to call for an ambulance, which he did.  I met them downstairs in the ER.  Yup, M was on 4th floor (I think it was 4) and J was in the ER.  He was alert by the time we all got there.  All the tests came back ok, so we were hoping it was a fluke.  Little did we know...

Monday, May 1, 2017

Not fair

So a friend of mine is getting ready to say goodbye to her little girl.  They've selected Wednesday as "the day." My heart goes out to her.  I can empathize with her pain, but I can never understand exactly how she feels. 

This is just not fair.  Her daughter has fought her battle long and hard, just like my J fought his disease.  She was a micro just like my Maryn.  She has a little brother to watch over.  She won't have to suffer any more, but that doesn't help.  This just fucking sucks.  No child is supposed to go before his/her parents.  I'd like to think we'd all change this if we could, but we are so helpless.  The proverbial "life isn't fair."  There is nothing anyone can say or do to make this any easier. 

I want to be there for my friend, but it's too soon.  I suck as a friend.  I just can't.

So Jaime, please watch out for Montana on Wednesday.  I told her mom I'd have you greet her and show her around.  She likes horses, so maybe you can show her the stable.  God bless you my sweet Buggy Boy.

Wednesday, April 26, 2017


First thing - stop trying to make me feel better.  It won't work.  And honestly, you'll just piss me off and alienate me in the meantime.

This grief things sucks ass.  Yesterday and today are really bad.  My eyes are so swollen from crying so much that it looks like I fought Mike Tyson and lost.  Everybody wants to fix it.  But there's nothing anyone can do.  I just found out that we got the autopsy report back.  No, I haven't looked.  I've had a few people look at it for me and give me a little bit of info.  SUDEP.  Sudden, unexplained death from epilepsy.  And of course they don't know exactly how this happens.  So I'll never really know if I had gotten up one more time if I could have saved him.  Of course family and friends are saying that it wouldn't have changed anything, but they don't know that.  I understand they are trying to make me feel better, but it feels like it's undermining me.  Placating me.  Wishful thinking.  The proverbial rose-colored glasses when no one knows what color they should be. 

I need someone to hug me and sit there in silence.  Don't try to fix it because you can't.  Hold my hand and just let me lean on you.  Like literally.  I may not be a touchy-feely person in general, but I need the human contact now.  And I can't deal with anyone else crying and being super upset either.  That makes me feel like I have to try and comfort someone else.  And I don't have that in me right now.  Call me selfish; I don't care.  It's taking all that I have to keep myself together (which is working about as well as a pair of rusty scissors).  And stop trying to make me talk about it.  I can't process this shit, so trying to make me express what's going through my mind confuses me, frustrates me, and makes me question everything.

I'm sure this wave will ebb and flow.  For the rest of my life.  Right now it's at a pretty high peak.  And he knows it.  He's still sending me signs.  And I need it right now more than ever.

Friday, April 14, 2017

Easter approaches

So this is supposed to be the biggest holiday in the Catholic faith.  But I tell you what, I sure as hell don't feel like celebrating.  Call me selfish or whatever, I don't care.  Spring and Easter are supposed to represent new life.  Yet my son is gone.  Holidays are a time for families to gather together.  A huge piece of mine is missing.  Longer days mean more light.  Yet my world is permanently in the shadows.

I can't get any Easter basket stuff together, because it's not a holiday without him.  Hunting for Easter baskets for just his sister and not him is just not right, not okay.  I won't even be able to eat.  Ham and potatoes were some of his favorite things to eat.  I can't eat or even buy his favorite foods.

So while I'm forever thankful that God promises a life together beyond this realm, I think I'll just spend the day asleep, trying to avoid life in general.  And if you want to help, distract me with anything NOT Easter.

Monday, April 10, 2017


I've been craving to get a sign from my son that he is ok.  I've been waiting to see cardinals or butterflies.  I've been looking for random change on the floor.  Nothing.  It's been so hard not knowing.  Well, I think J realized that now.  But the signs aren't for me, they are for his sister.  J is taking care of his baby sister from the other side.  I have no doubt now.

The first two instances you might write off as a coincidence.  Two months to the day that J passed, I get a phone call from M's ENT.  He's no longer suggesting the massive, 2-3 weeks in the hospital, reconstruction surgery to get her trach out.  He wants to do a simple scope then pull the trach the same day.  We will spend 2-3 days there instead, if all goes well.  Now of course I'm terrified since we will be dealing with her airway (I'm convinced J stopped breathing during or just after a seizure).  But I trust this doc.  And I made him aware of my concerns and the situation.  I believe he wouldn't recommend this if he didn't honestly think it was the best for M.  Did he pick that day?

Stemming from that, once her trach comes out, M won't need a nurse at school.  She'll just need a para.  This is huge.  She's always had a nurse working with her with the educational stuff.  That's what I'm used to.  How's a para going to deal with all of her disabilities?  Well if the rumors are true, I have nothing to worry about.  I've heard that J's para will be M's starting next year.  I adore this woman.  The love she's shown J, the hard work she's done with him, the results she's gotten with him are all beyond my wildest expectations.  I have NO doubt Ms F will do amazing things with M.  Did J intervene?

Honestly, those two I wrote off.  But last night was a no-brainer.  J is watching out for M.

I noticed the same thing a few nights ago but thought nothing of it.  I went to put M to bed last night.  I asked her if she wanted her "necklace" on (PSI collar).  She said no and assumed her sleeping position.  I took that as a "leave me alone and let me go to sleep" hint.  So I did.  I'd take care of the rest later when she needed her meds.

8:30 rolls around.  I get her meds and her water ready and go into her room.  Her blanket is on her.  That happened early this week, but this time it jumped out at me.  I gave her her meds and put her necklace on.  I called to my mom and asked if she had put M's blanket on.  No.  I then went into see my dad.  I asked him the same question, even though I didn't remember him hobbling with his walker to her room.  No. 

At that point, I knew.  J covered M.  Always the big brother.  Always taking care of her.

Thursday, April 6, 2017

April 6

Today is just a super sucky day in general.  Of course there are the "normal" things going on that stress any adult out.  But today is worse.  Not only am I trying to deal with the loss of my son, today is also the 11th angelversary of my first.  11 years ago today I lost my first to miscarriage.  I was roughly 8 weeks along.  We didn't know if the baby was a boy or a girl, so we named her Taylor (my heart says girl).  I didn't know how I was going to survive that ordeal.

Now let's compound that with the grief I feel today.  And let me tell you, while both are devastating situations, there is also a HUGE difference.  Which makes me feel worse.  I sound like an awful person when I say that my miscarriage was "easier" than losing J.  Like losing one child is worse than losing another.  It sounds like I love one more than the other.  But that's so far from the truth.

With my miscarriage, I was grieving the loss of all of the hopes and dreams.  I will always wonder what she would have looked like, what she would have liked to do, etc.  But I also had no frame of reference.  With J, I miss everything.  I know what he looks like.  I miss that.  I know he likes to bounce.  I miss that.  I never got to hold Taylor's hand, but I did with J.  I miss that.  I miss feeling the prickliness of his hair.  I miss the drool spots on my shirt.  With J, I had actual experiences, so I have actual things/events/memories that I'm missing instead of just all of the "what ifs." 

So here I am today grieving my one and only son.  And grieving my first angel.  And feeling like the most awful mom for saying there IS a difference.

Wednesday, April 5, 2017

Fuck you Aetna

So yesterday I get a bill from the Med Center.  $300.  From September.  For J.  Because the damn insurance company was throwing a hissy fit.  They didn't know they were primary insurance.  WTF?  How can you not know that?  Yes, J had Medicaid, but that hasn't changed in over 7 years.  So because you can't get your damn act together, I had to call about my dead son's medical claims.  I will never forgive you for this.  I'd say fuck you and the horse you rode in on, but the horse is innocent.  And have fun paying more claims for me now that you put me through this shit.

Tuesday, April 4, 2017

You didn't just say that.

"I understand" - no you don't
"I can imagine" - no you can't
"How are you?" - you don't really want to know
"Are you ok?" - what do you think?
"I lost my grandfather/uncle/etc." - doesn't fucking compare
"At least you had him for..." - how long is enough with YOUR kid?
"He's not hurting anymore" - should never have been in the first place
"You're so strong" - I have no choice
"I couldn't do it" - I want to die every single day
"But you still have M" - and that makes it better you fuckhead?

And so help YOU, if you come at me with "God has a plan" or anything like it, I will go off on you.  And quite possibly hurt you.  And not feel a damn bit sorry about it.

So what should you say?  I'm sorry followed by a hug.  Because no words can make it better.

Wednesday, March 29, 2017


My boy is gone.  Two months ago today epilepsy stole him from me and from the world.  The world simply isn't as bright anymore.  For anyone.  I still don't know how to process this.  The only good thing I can say is that he's no longer suffering.  I may be using this platform to get my thoughts out from here on out.