Failure is not an option

I know I don’t usually update our blog so soon after just posting an update, but I can feel myself shutting down, so I thought I better start writing to try and get the agony out of me.

We are six days post-op and things are still not going well.  Gabriel cries for hours at a time.  It can’t be pain because I am managing his pain meds well – alternating Ibuprofen and Tylenol every three hours.  The only thing it can be is hunger.  Before he had the device put in, Gabriel was eating 5-6 ounces of formula every 3-4 hours.  Now I have to force feed him because, most of the time, he still refuses to eat.  I am squirting formula into his mouth every 2½ to 3 hours.  Usually, I can get 3 ounces in him before he is completely hysterical.  Other times I am lucky if I can get 1 or 2 ounces in him.  I am concerned he is going to start losing weight if I can’t get him to eat.  Worse than that, yesterday we had a very good day.  He actually ate with minimal drama all day.  He also slept all day – possibly catching up on the prior five days of no/poor sleep.  Today, we are back to me squirting formula into his mouth.

Chad is not handling all of this very well.  He will likely be upset with me for sharing this, but it is all part of the story – and the stress.  He feels completely defeated since he can’t get the baby to eat.  He worries that we are starving Gabriel.  When the baby is in the middle of a 4-5 hour hysteria, Chad shuts down and runs away to hide in the basement, leaving me to try and figure out what to do.  I mistook this as anger with the baby the first time it happened, but really it’s the loss and frustration of not knowing how to make our baby feel better.

The other night, after working a 12 hour shift, Chad came home at 7:45 to a crying fit that had been going on since 5:00.  He sat down, put his head in his hands and I sent him away.  At 11:00 when the crying stopped and the baby finally went to sleep, Chad returned.  He told me it was ok for me to hate him.  I said that was good because honestly, that was what I was feeling at the time.  He didn’t know that while he hid downstairs I was holding our baby and crying my eyes out with him.  Chad’s response to my ‘good’ was to tell me that he hated the people who did this to our son.  I told him, the people who did this to our son, is us. 

And that’s where I am now.  In the land of hopeless defeat.  A land full of sadness and guilt.  A land of anger and pain.  A land I can’t escape from.  We made this child.  We gave him life.  It was something in us that did this to him.  We built this land.

I know we did what we had to do by having the Latham Device put in.  Gabriel can’t go through life with the clefts; they had to be fixed.  But now I am back to wondering why this had to happen to him.  He is just a baby.  His life is not supposed to be hard.  He’s supposed to cry because he is hungry, tired, or needs a new diaper.  He is not supposed to cry because his mouth hurts, he has a huge foreign object in his mouth, or every time he’s hungry he can’t get the bottle to work in his mouth.

I am so envious of people who have babies that are ‘normal.’  Babies where you can just pop a bottle or pacifier in their mouth and they know just what to do.  This is not a life I would ever choose for my son; and yet, it is a life we have been forced into.  I have been crying a lot lately.  I figure if I keep crying, God will finally take me seriously and decide it’s time to help. 

I want all of this to be over.  I want my son to be his usual happy self who only cries when he’s hungry.  Sadly, I hope that the Latham Device moves everything in his mouth faster than expected so we can get it out.  I say sadly because when that happens, we go into surgery again.  Makes me wonder if all of these struggles will just happen again.

I feel like such a failure as a parent.  I cannot provide the basic needs my child has.  Even poor Ethan is feeling the effects of this.  Gabriel requires so much time and energy; I have nothing left to give him.  It all just doesn't seem fair.  I realize that failure is not an option, but right now – in this moment – I think that maybe…it is.