5 helpless feelings as Jillian's mom

I am a very independent person most of the time (I hate taking my car for an oil change and when people show up at my house asking for has for their dead car I become a chicken) I am the one who chases mice out of the building at work. I started teaching Sunday school to 3 year olds by myself when I was I middle school. I drove through Chicago trafic frequently as a relatively new driver and did it independently multiple times. While things in life scare me (I don't do haunted anything) I frequently just keep plowing through. The things I dislike to do most are not nescicarilly the hardest things but the most tedious (washing dishes, vaccuming the floor, folding laundry). The past couple of weeks have been hard. We have stayed out of the hospital for the most part the past few weeks however that has not meant health or that it is not a bunch of exhausted people at our house (we are still doing nebs about every 4hrs and just went about a week without poop) 

Sometimes the best strength to keep moving forward is to look at what you have conquered before. I have been thinking about the challenging moments over the last two years. Times I have felt so helpless and have plowed forward. For me this is a list of the most helpless times I have had in this medical roller coaster. A countdown list for me to look at when I feel discouraged to look back at and say "we made though that, we can do this."

5. Sleepless nights: I wish I could say the amount of sleep I get a night has changed much in the past year, but it has not and probably will not (feeding pump), I am thankful that my body has adjusted to life with less sleep. Pre feeding tube and NG tube life brought less sleep then there is now. She use to vomit frequently during the night. She would then choke on the vomit. I stopped sleeping for a while because the choking was so frequent during the night. While there are still nights I sit and watch her breathe(a lot since this most recent vaccine) most nights she is able to sleep safely. 

4. Waiting for test results: it's funny how slow it feels the world moves while you are waiting for test results. Painstakingly slow. With Jillian it feels like we are always waiting for test results. Right now it is her MRI and her immunology testing. 

3. The why: we still don't have an overarching diagnosis for all of this, just a long list of what feels like random things that cause a lot of trouble for our daughter. We see a long list of doctors, and she stumps many of them. It is so disheartening for doctors to look at you like you are nuts when you explain all of the parts to what is going on. It is also frustrating to feel like because we currently don't have a name for all of this that some doctors brush us off. We keep fighting for the best for her though.

2. Watching her struggle to do basic things: people struggle, it is part of how we grow. If life was easy we would stay the same. What is hard for me is to watch her struggle with basic things and not be able to fix it. I can help her up when she falls when walking however when she is not breathing right for days at a time there is only so much I can do. When she stops pooping for days there is only so much I can do. I do what is in my power for her, but there are just some things I can't fix. 

1. Watching our child go into the OR: that is the most helpless feeling I have ever had in my life. Watching Jillian go one direction and having to go another is aweful! She probably will need more broch and edg and other such things in the OR but it is still hard. 5 times now and it is not any easier.