A Limit

Looks like I hit a limit. I lost my cool today. Sometimes I want you, dear readers, to think I have it pretty well figured out…but really, I so don’t.

Ezzy’s feeding tube pulled out today…this happens. With a child like Ezzy who squirms all the time and needs her extension hooked up most of the time, it just happens. I have replaced her g-tube around ten times. Often she doesn’t even notice. But today it pulled out and she noticed.

Boy did she notice.

I don’t know if it was the pain, the surprise…or fatigue. But she cried and rolled around (leaking food everywhere on our white rug). I quickly got my emergency fix-it kit out of her diaper bag…syringe, cloth, lubricant…by this time Ezzy’s cry had turned into a wail. She doesn’t cry loudly, but the sound of this cry just cuts me to the bone. I am pretty focused about this stuff and I was working quickly to pop the g-tube back in, but with her crying her tummy was clenched and I couldn’t get in to go in…I tried to comfort her but she wouldn’t stop.

Next she starts holding her breath…another Ezzy specialty when she is upset. Lately she has been holding it long enough to not only turn blue but to actually pass out. Out she goes. Now, obviously, I have abandoned trying to get her tube in and am just trying to get her to breathe again.

Once she comes around she goes right back to crying in these short little bursts “ah, ah, ah,” gasping in between. None of my usual tricks calmed her. Not the Muppets soundtrack, not my singing, nothing.

Well, I considered going to the ER at this point, but, frankly, after the 2 hour wait to get in to the doctor her stoma would be closed for christ’s sake…and chances are I have done this more times than the person we would get. I even considered calling our nurse (who had just left) to come back to help me…but she was 15 minutes away and I knew I had to just do this. So I took a deep breath, grab a brand new g-tube of a slightly different variety (my last safety, mind you), collect myself, tell my girl it is going to be ok, and somehow get the thing in.

As soon as it was in I could feel the tears streaming down my face. I totally lost it. I picked her up and held her so I could comfort her…and not let her know I was crying too. Obviously I was relieved. But more than that I was just horrified at the stupid shit my daughter has to go through. And I was angry that I have to be the one to do all of these things to her, you know? Much as I know that I am one of only two people in the world who should to do this…that she trusts me and knows that even when something is difficult and painful that if I am there with her it must be ok…I just want to scream about it. It is not just the one thing. It is the culmination of watching 2.5 years worth of more pain and frustration than I have had in my lifetime done to her tiny vulnerable body.

And it is that feeling of being utterly alone…of knowing there is only one way through something and it is by yourself. As I think about it this seems to be the counterpart to my post the other day about help from friends…and I guess it is why I am so positive about that help. Because there are just so many things no one can help you with.

Sometimes you are just on your own.