I'm terrified too. I wish we could pack one of these nurses into our suitcase (zuitcase, Grace calls them) and smuggle her home. It's so scary to think that Grace's primary medical care will now be in our own untrained hands.We have to watch for small symptoms, like a shiver when flushing her picc line every morning. That shiver could mean that bacteria was flushed into her heart and we'd be on our way to the ER minutes after. Or a fever could mean we'd be back in the hospital for another week. We'll need to keep tabs on how much she eats, drinks, poops and how she takes her medicine. We'll need to limit her germ exposure while still trying to provide a "normal" life for her.
I think I'm also scared of the emotional impact it'll have when we get home. Strange enough...I like it here. I like that Grace has nurses who know exactly what to do. Doctors who can get her medicine to feel better in minutes. The hospital is bright and colorful and in it's way it has been a happy bubble. Now we'll be home and we'll have to face the reality that our new reality means Grace has leukemia. I know it seems like being here would be the biggest impact, but coming home and her still having it is much more real and much more scary.
But being home and then having to come back to the hospital might be harder still.
Here it's been so busy. We've spent the hours getting tests done, talking to nurses, taking medicine, visiting with family, entertaining Grace, talking to doctors, and holding Grace when she feels sick. Writing these last few nights has been my only time to process and I don't feel I can fully because there's nowhere for me to go and cry for as loud and as long as I need. So I don't think I've allowed myself to really let it sink in yet. It's more been do this, do that, keep busy. I know I need to process, I know I'll get that time and space and home, and I also don't want to.
And I've been so blessed by so, so, so many people reaching out to us in love. And I feel terrible that I feel like I shut down a little instead of taking it with arms open. Just to tell our story again and again is painful. Sometimes to share updates hurts because it puts the truth in writing and then we can't take it back. I love the love and yet it makes our situation real, so I find myself hiding from even good friends. I find myself with my fists up emotionally. If I've done that to anyone reading this, please know I plan on it being temporary and I love you still. I hope you can deal with this side of me until I'm a little more functional.
I pray to God that tonight is our last night in this strange bubble, at least for a while. And I pray even more that his presence is what will make our home feel and be safe for Grace. And I thank him so much for this hospital, for all the staff and doctors and nurses and I even thank him for the rich old ladies who left all their money in their wills so this hospital could be built. And I thank him for all the love and support, and for my family, and for my kids. And most of all, for him.