Sunday, March 25, 2018

The Unknown is Scary, and Hard

I'm just sick. 

All along, with everything else, trach, g-tube, lack of mobility, and everything, I've been grateful we didn't deal with seizures. 

Oh, we had them here and there, occasionally, as in probably less than five times in his life. 

Until this week.  Since Thursday, he's (at least) doubled that. 

On Thursday, he had four "episodes," none lasting more than 45 seconds spread through the day.  His face turned red, he went stiff and non-responsive, but his vitals didn't change, at all. 

Friday morning, he had 5 within a 15 minute period and this time, his heart rate shot up into the 140's each time and then dropped back to where it belonged in the low 100's. 

I spoke with our ped Friday evening.  Respiratory season is still in full swing at the hospital, and if he's not actively seizing when he's seen, chances are they won't do anything at all, especially since it's a weekend.  So far, his vitals have all been within our realm of control, and he's on monitors that would alert us to a change in his heart rate, respiratory rate or his oxygen.  So we decided to watch and wait. 

What that means is that I monitor him this weekend, and if we don't see anything, we probably just keep watching.  If there's one or two here and there, well, we need to start looking into things next week.  Obviously if they increase or cause issues with his heart or breathing, we can't wait, and head on in. 

So now what?  Well, he's been really tired.  Yeah, seizures do that.  He slept from about 7 pm until 11 am yesterday, and then from 7 to noon today.  His oxygen has been a bit wonky, but not totally out of control, just close, 'cause that's the way he rolls. 

And then about 1 pm, I realized I was seeing another one.  And it's got me wondering how many I've missed.  I mean, if they're 15-45 seconds, if my eyes aren't on him at that moment (less than a moment) I miss it. 

I really have no idea where we're going from here. 

Thursday night I sat with my husband and told him I just couldn't do this.  It was too hard.  This on top of other stresses was just too much.  I can't.  Except, I have to.  He reminded me that when we were much younger with only two kids, things seemed pretty overwhelming, and then a third (and more) came along.  If that 20-something me had had to deal with all of this, I'd have had a breakdown.  (Okay, jury may be out on whether or not I did anyway.) 

I remembered my Nana, who sent not only one, but two husbands off to war, buried a premature infant, and never saw her first husband again after he went MIA, and then outlived her second husband by 20 years, fighting cancer long after everyone thought it was over. 

I remembered my mom, caring for six kids while Dad was often away with the military.  How accidents and emergencies always seemed to happen when he was gone, and she just did it.  I don't ever remember her complaining that it was too hard, or that he should be there.  She just handled things. 

And I realized, I may not like this, in fact, I'm pretty sure I hate it, but I will still do it.  Because what other choice is there?  It may not be elegant, but I've never been accused of being that.  It may not even be pretty.  But I can, and I will, and I will not only for Aaron, but also for my other kids. Regardless of what life throws at us, we'll come through it, maybe battle-scarred, but stronger than before. 

"For I the Lord thy God will hold thy right hand, 
saying unto thee, Fear not; I will help thee."
Isaiah 41:13


  1. That is so hard! When Lilly was a week old she had a couple hours where she kept having seizures. Then they stopped and never returned. That I know of. I am praying that Aaron's seizures will STOP and not return.

  2. I’m so, so sorry, Rebekah. My greatest consolation is that we don’t have to do it alone. Jesus will sustain you in your hour of need. I’m praying he will wrap you in his arms in the coming weeks. Love you xoxo

  3. You are strong and you do keep putting one foot in front of the other. Praying for all of you that you have the strength to help figure out one more way to help Aaron endure his life. I can’t imagine what he is going through too. A mother is weakest when wanting to provide relief for her child, but can’t. I love you!