Everyone keeps telling me to take breaks, but I don’t know how to do it. I have no clue how to find balance in my life with a baby. They say to rest/sleep when she’s sleeping. They say to get away when I can. They say to play with her when she’s awake and alert. They say to hold her upright after feedings for 30 minutes. They say to hold her as much as possible, sing to her, do her exercises with her. And all I can think is, what about the other stuff I need/want to get done? Like eating, showering, going to the bathroom. And those are the bare minimum. I also would like to write posts for all of you to read, write those thank-you notes I mentioned yesterday, and maybe take a walk or read a devotion. But THERE IS ONLY SO MUCH TIME IN THE DAY!
And when we go home with her, it will be harder. Here they will bring me meals, not great ones but at least I don’t have to do anything to have food set in front of me. And Travis takes the laundry home to do it. But when we go home, I will start doing the laundry again and there will be more of it – towels and blankets, for instance, that here belong to the hospital and I don’t have to wash. And at some point, I want to start cooking again. It’s been months since I cooked anything, and I miss it. But how do I do that and keep an eye on her, especially if the time to prepare a meal happens to intersect with one of those alert times for her?
This morning I talked to the doctors about her feeds. She threw up again last night, and I’m fairly certain it’s because we’ve been pushing her to take more than 2 ounces at a time. The doctor said there is no reason for that, but we can start feeding her every 2 to 2 ½ hours. And something inside me just wants to panic thinking “that’s even more time out of the day.” Instead of feeding her 8 times a day, we could be doing it 12 times.
The worst thing in the back of my mind is that all of this is your basic new parent, adjusting to life with a baby stuff. Couple that with the fact that she has special needs, that we need to start helping her reroute her neural pathways for movement, and it seems downright impossible. When we first brought her home, I was spending 8 hours a day just devoted to feeding her, between nursing and pumping. So 4-6 hours is better, by far. And I don’t have to do it all. But I also know my husband and how he is already feeling the burden of not being at church much lately. He will need to spend some extra time just trying to catch up. And at some point, I would like to get back to working at church too. When is the time for that?
I try to not think about this stuff very often because it is too heavy for me. Just like I try not to think about the immensity of her diagnosis and the damage that has been done to her brain, or the fact that we very nearly lost her. However, not thinking about it doesn’t seem to make it any better. If we could schedule every moment, would it be easier? Maybe, but it doesn’t matter because some of the stuff is dictated purely by Samantha. I wish I felt comfortable enough with the nursing staff to leave her here for a few hours or even overnight to take a break, but when I leave for just a meal I think about the fact that the only signal they have is her pulse ox – and it isn’t very reliable. Will they hear her crying? The downside of having this somewhat isolated room is that it isn’t visible from the nurses’ station, and that makes me nervous too. Will someone notice if she is awake or alert and play with her? I just don’t know. And right now it feels good knowing that Travis and I pretty much have handled all of her feeds since she started getting better (my mom fed her once). It’s one of the ways she knows we’re her parents. The physical therapist this morning said that she knows I’m her mom. I wish I could believe that, but it’s so hard to tell. Am I able to comfort her just because of that, or because I’ve simply learned a few tricks along the way? And if I am able to comfort her because I’m her mom, how can I leave her for even a short time – what if she needs me? And the flip side is just as scary to me – what if she doesn’t need me after all?
All of this is a control issue for me. I know it is. I know it’s a form of idolatry, needing to be the most important person in her life. I just don’t know how to turn away from it.
Blooming Joy! 
That is a tough balance! I think it’s something all moms struggle with to some extent, though circumstances may vary a lot. I think your insight that it’s a form of idolatry is very wise. I still struggle with that aspect of it, too!
The one thing I can say, for getting things done when you’re back home with her, is that baby-wearing is a wonderful thing. 🙂 (Swings and bouncy seats can be helpful, too.) That and things like crockpot meals where timing of prepping it isn’t as critical. I do a lot of quick and easy meals (grilled chicken salad, chicken tacos, etc.) And I took a tip from Heidi B. and now I usually start dinner as soon as Tom gets home and can take over with the kids. (Though I know, being a pastor’s wife too, that Daddy’s not always around at dinner time! Those days are often simple meals or leftovers!)
I know that’s a ways in the future, but you do eventually figure out how to get things done even with an infant or two in the mix. I think you have to lower your expectations a little and get a little creative. 🙂
One other thought: Is there anyplace nearby that you could escape to even just for 45 minutes or so, when Travis is there, just for a change of scenery? Starbucks, walking around a mall or grocery store, a park–something that might help re-establish a sense of normalcy? I can understand not wanting to leave her alone with just the nurses–my boys’ hospital stays were both just a couple of days but I would’ve felt weird leaving them alone with the nurses, too–but maybe if you try a small break or two when Travis is there, you can see if it helps or if it’s not really what you need right now? Just a thought.
Hey, Stephanie,
Here I come again with my (overly?) simplified perspective. After 5 kids and 5 grandkids, I have some fairly definitive ideas.
Anyway, God’s grace; that’s the answer. “My grace is sufficient for you.” If it worked for Paul, it cotton-pickin’ well better work for us. I just got to the point in my life where I completely rely on it, never question it, and rarely ask other people about how I am supposed to cope (they will give me enough advice anyway). I just rely on His grace.
Works every time.
Not necessarily comfortable, not always clean and quick, sometimes downright trying; but, ALWAYS sufficient.
May He continue to bless you with grace as He has throughout this ordeal. You are very special for Him to have picked you as his vessel for this grace.
Jim
Stephanie, right now it’s not about YOU needing to be the most important person in Sammuy’s life…it’s that you and Travis ARE the most important people in her life! Like you said the other day, you are her advocate right now, because she doesn’t have her own voice. Please don’t berate yourself for feelings that in your situation are perfectly natural and helpful…even, dare I say, God-given!?
I was reading your first paragraph, smiling and nodding in recognition. Would it help if I told you that these are feelings I am sure that pretty much every parent in the world can identify with at some point? I was actually just remembering the other day that this feeling I have right now, of being frequently annoyed and frustrated with my life and never being able to get done what I want to do, was one that I had pretty much the first whole year of Annalie’s life. I think those feelings are especially to be expected with a first baby, and especially when you have that baby after years of being settled into your marriage and adult life and being accustomed to having a great deal of freedom and time to do what you want to do, when you want to do it. That’s not even taking your special situation into account! So please rest assured that (1) what you are feeling about wondering how to fit it all in the day and when you’ll ever get to pee or cook dinner again is totally, completely NORMAL, and (2) it will get easier! Well, some things get easier, some get harder, but you learn and adapt and before you know it, you’ll be able to get stuff done again and go to lunch without feeling guilty.
Cut yourself some slack right now; things are still very new and uncertain. I don’t blame you for not wanting to leave Samantha for even a few minutes to eat. You’re still kind of in crisis mode. Eventually you won’t be, and it will be much easier to take a break and share the load then.