Coming home has been better than I imagined and also harder than I imagined. Travis and I are parents again. I don’t know if that makes sense, but if you’ve ever had a child in the hospital you probably can understand what I mean. Instead of the doctors and nurses determining the schedules, making decisions, checking diapers and measuring medicines and food, it’s us again. We are the ones caring for our daughter. That is a blessing because we get to spend lots of time with her. But it’s hard because there is a lot involved. She eats every three hours, or 8 times a day. At six of those feedings, she also gets medicine, different ones depending on the time. Then she also has one med that is every 8 hours, which means it only overlaps once with feedings. So ten times a day we are doing very specific things to care for our daughter, plus the diaper changes that don’t happen to intersect with the feeding/med schedule.

I’m tired still, but I can’t seem to let myself sleep during the day. My mind gets going or I think about all of the stuff that needs doing or I feel guilty because I’m in the bedroom when there is a pile of company here. Plus it means less time with Samantha, and I hate that too. I want everyone to hold her as much as possible, and they do, but then I feel guilty that I might not be holding her enough. Why is that?

The one thing that has come out of the events of last week is that I’m no longer afraid of her dying. My sister asked me today if I’m constantly getting up and checking her. I do check her when I wake up, but it’s more to make sure she’s comfortable. I do check her face and watch her breath, even put my hand on her chest to feel her heart. But all of this is not the fearful thing it might have been even a week ago. Now it’s me being her mommy, loving her as long as I get to. And whenever God chooses to take her is ok. Well, I’m not ok with it really but I’m at peace about it. Of course then I think about what it means that at some point in the future I will be childless again. I will sit here and think about my memories of her instead of sitting with her. I already find myself mourning her in a lot of ways. What do we do with her stuff? It took me six years to let go of all of the Jonah stuff, but I couldn’t handle looking at it either so it sat in our basement. Much of it was ruined because of the moisture by the time I went back through it. I never wanted to have reminders out of him. Now suddenly I find myself pulling out the few things we have of him and feeling guilty about that, too. Why do I have less stuff from my son than my daughter? I keep reminding myself that a stillborn is different than having your child pass away, but I still feel like I’m not able to honor my son the way I should. This whole process is dizzying to say the least.

I realized too that the way heaven and God are separate from our concept of time can be confusing to us in this life. Even though Jonah was technically older than Samantha (he was stillborn 8 years ago) I keep picturing him as her little brother.

I keep wondering too why we have to be the parents who lost two children. I know it hasn’t happened yet but when you know it’s coming, it’s hard not to get ahead of yourself. I dread the future questions from meeting new people, who ask purely out of politeness or curiosity, “do you have kids?” It was hard enough before. Now I think it will be impossible to hear it. And it’s just a question meant to find out more about your family. I never ask anyone about their kids. I figure if they have them they’ll talk about them. And if they don’t it may be a painful reason why.

Going to church today was also good but hard. I loved seeing people, but getting through the service where we recognized Samantha’s baptism was just about impossible. Travis had to ad-lib some sections because he didn’t want to read the parts that talked about years to come or the future. Some still ended up being part of it. I just held Samantha and cried, my arms and back aching from her weight (not that she’s heavy, but you can’t really shift her much without causing her some pain). I couldn’t even look at the people in the pews. And I’m not exactly sure who was in church today to be honest. I saw some before church, and some at the cake/punch reception we had after, but since I missed the end of the service with giving Samantha her bottle and meds (thanks to my sister for helping me with that), I didn’t really figure out who was all in church today.

Yesterday a photographer came and did a photo shoot for us. I really hope the pictures turn out well, she did some neat shots of us and Samantha and her cousins. All of her first cousins are here right now! It’s weird thinking about how she has six cousins and all of them only have one, her. And we tried explaining to my sister’s kids how they are related to Travis’ sister’s kids, but the truth is they really aren’t, so Allison’s oldest came up with the term “pretend cousin.” I guess that works.

So far we are being helped in a lot of ways – hospice is taking care of so much, but we also qualify for an overnight nurse through our insurance. It’s hard to think about having so many strangers in our lives, but Travis keeps reminding me to take whatever help we can get right now. I keep reminding him of that when he doesn’t want to overburden people from church. I know it’s so hard for all of our church family right now – they were looking forward to Samantha as much as we were, and they’ve hardly gotten to see her. We waited to take her until her due date, per doctor’s orders, so she went on Palm Sunday. It was two days after that when she got sick. Today was the second time she went to church. Considering where we’ve been, I’m so thankful.

Keep those prayers coming. I can’t promise how much I’ll be blogging now that we’re home and surrounded by family, but I will try to keep doing it as much as I can. I know I need it more now than ever.