Thursday, January 24, 2013


There hasn't been much to say here over the last few days.  
I have many thoughts; most are jumbled and nonsensical.  

The kids haven't felt good.  I haven't felt well.  Daniel has been working.
Hospice called; we'll be starting soon.

Mabel went to bed with a fever last night and woke with one today.  She fell asleep in Daniel's arms this morning and in her bouncer while I was doing dishes shortly after that.  We all know that's unusual considering she never sleeps.

Fevers are always a really bad thing for our girl.  Her seizures get worse, her body temp does weird things.  Mostly it's the increased jerking that is hard to handle.  

In the last two weeks her feeding has changed. 
 She is choking on her bottle and when we do let her try, it takes literally 30 minutes for her to drink 2 ounces.  
I've been increasing her tube feeds knowing there's not another option but I hate thinking that she'll stop drinking altogether.  She enjoys it.  It seems to comfort her.  

I hate that every little thing I notice terrifies me so much.  It's just that I've learned how unpredictable life can be with a child like Mabel.  I don't want to live in fear but I don't want to live unprepared either.  The balance in that is extremely difficult.  

I know this is all very vague.  
I just don't have it in me to write out all that I'm feeling or thinking today because even I can't pinpoint it all.  I just know that I'm terrified of sickness and how fragile it makes Mabel seem.  I hate how the prospect of death is always knocking on our door.  I hate feeling like I'll never be 'ready' and then I feel panicky.  

The panic is frustrating in itself because there is nothing I can do to change any of it anyway.

Please just pray.  
For peace.  For strength.  For guidance.
As you always do.  
I'm grateful.



Praying for wellness & strength for the whole family & sending hugs.

Jessica Kramasz said...

Praying for Mabel and the rest of you too.

Darlene said...

Praying for you, Mabel and your family!!! Hope you are all quickly healed!