It’s all up to me

I’m feeling a bit sorry for myself right now.  It’s 2 am and I think the most consecutive amount of sleep I have gotten all night is 45 minutes and I have been up since 12:30.  Kyle has not been sleeping well, I think Thursday night was the last time he slept more than 4 hours in a row.  Even though my hubby and I take turns staying up with him we’re still in a perpetual state of exhaustion.  And even when it’s my night to sleep you don’t sleep well because you still hear the monitor during the times he wakes up.  Eventually my hubby gave up last night and slept on the couch but I still didn’t sleep well.

It just sucks, plain and simple.  It sucks that we’re exhausted, it sucks that we have to go to bed five minutes after Kyle does in the event that we don’t get a lot of sleep that night, it sucks that we never have time together as a couple because one of us are always tired.  I love my son with all of my heart but I hate his disease.  There should be a rule that when you have a seriously ill child that the rest of your life should be easy.  We never have enough time to spend with our older son  or each other and although I realize he is learning compassion and patience I would  rather have him be a bit more selfish and have 2 healthy kids.

So why am I writing all of this?  I’m not looking for sympathy, I’m just trying to keep myself from eating.  I am hungry but this desire to eat is more out of fatigue/sadness/anger/frustration/I don’t know what else. 

OK, he just gave me a huge smile and his gurgly sound that tells me he’s happy.  When I’m up with him I need to remind myself that I’m lucky he’s still alive.  I don’t know why but I was thinking a lot last night about when he almost died in August.  And if I’m going to be completely honest I think part of the reason I’m struggling so much right now is that for a fleeting second the thought crossed my mind that if he had died, in a way my life would be easier now.  I know most of you are reading this in shock right now, but unless you have a terminally ill child you probably can’t understand this feeling.  I KNOW it doesn’t mean that I want him to die, it’s just that I’m exhausted and all sorts of thoughts jump into your head when you’re tired.  But as a mom, to even think for a second that your life would be easier if your child died is the most awful, guilty feeling you can possibly have.

Well, the writing must have worked because for the moment I don’t want to eat.  I’m nauseous and can’t breathe because I have been bawling as I have been writing this but I don’t want to eat.  I can tell by looking at Kyle that he’s not going to go down for at least another hour but if he does that will give me 2 solid hours of sleep before I have to get up for school.  With any luck I’ll be in bed around 3:00.