Today has been an emotional day. I don't know if it because I am fighting a head cold, if it is because of pregnancy hormones or what. But sometimes I really hate days like today. Sometimes I hate being so "strong" and everyone thinking that we can handle everything so fine without much help from others.
Anyways, I was having a discussion with someone about Gracie and how her new diagnose of asthma may keep her from finally being able to get rid of the oxygen that has been a constant in her life. Before this flare up she was only on 1/4 of a liter both day and night, now we have had to increase it to 3/4 of a liter and her sats aren't even as high as they first were after the fontan. I had mentioned to this person that I think because of the asthma she will have to remain on oxygen day and night. The response I got was depressing in a way. "Well, that isn't that bad. Yes it would be nice to have her off for even a couple of hours but it isn't that bad to have to stay on oxygen."
Though this statement is true, it still upset me. Maybe I was looking for more sympathy or more understanding, who knows. But as I mopped the kitchen floor this afternoon, this conversation just kept playing over and over in my mind.
Yes I am grateful for Gracie's oxygen. It is a love hate relationship. I am grateful for it because it helps her heart and her lungs. I am grateful for it because I know that it has helped prolong her life. But I hate the inconvenience it is, for everyone, but mostly Gracie.
I hate how we can't go to the playground because she will constantly get tangled up or get whacked in the head by a tank trying to follow her around and maneuver her and the oxygen. I hate that we get stare from others like she is too sick to be _________. I hate that the poor child trips over the oxygen daily and falls to her feet crying. I hate that she is constantly tethered and can't play like her bothers and sisters. I hate that she doesn't know what her face feels like without the oxygen and I hate that she feels so unsafe when it is out of her nose. And I can go on about how restricting and bothersome the oxygen is...but in the end, I feel guilty because it is helping my girl be here.
I hope that I am wrong. I hope that maybe just maybe she will be able to experience even just a couple hours a day off of oxygen. What a feeling to feel free. To have nothing holding her back from being a kid!