This blog post is part of a series that I began for telling our story. You can read the first post here.

From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.

I really want to catch up with the dates on the calendar, but to do that means I need to double-up my posts even more than I already have. So bear with me as I will post twice a day for a while, in an attempt to get better caught-up. Thanks for your patience. 

First up, CaringBridge from May 26:

I’ve come to realize that when things get decided in the hospital environment, they happen quickly. We made the choice yesterday to go home with hospice care, and tomorrow WE ARE GOING HOME. I still can’t quite picture what that means, but I’m thrilled and exhausted and at peace and sad and just overwhelmed. I get so easily distracted – I just went to make a list of groceries for a friend who offered to pick them up for us in the middle of writing this. I can’t keep track of a lot of stuff at the moment. Is that normal? I think we are still in shock, processing the events of the last week and holding onto the feelings of peace and relief from yesterday.

Today has been a little harder, though. The realities of taking home a baby in her condition are starting to sink in. We started to feed her last night with limited success, only getting her to take partial feeds. We did get some help this morning from Samantha’s friend Magda (I don’t know if she spells her name that way) who is an OT here. She helped us find a new feeding position that doesn’t put so much pressure on her head. But we also wanted to make sure we had other ways of giving Sammy what she needs, both medicine and food, so we got a lesson in placing an ng tube today. That was a bit traumatic for mommy, daddy, and baby. Samantha made her feelings about it clear. The two of us ended up feeling guilty and crying about it, wishing we hadn’t done it. But then when we went to give her the next feeding, she didn’t want to finish, and we were reminded why she needs the tube. I hate looking at the tape on her face, though. We have so many pictures of her with tape on her face, from the NICU when she was born (feeding tube was placed then to get some nutrition into her right away even before breastfeeding) to the PICU when she was on the ventilator, and now she has the ng tube for the third time. I just keep breathing and reminding myself that having the occasional trauma of replacing the tube (like if she pulls it out) is better than constantly being frustrated about getting enough food in her tummy the regular way or not being able to get her to swallow her medicine.

She’s more tired now, but she’s also in a lot less pain thanks to the medicines she is on. That is such a gift. Last night after she got her pain meds I was able to stroke her head without causing her pain. We still have to be extra careful about how we hold her, because the back of her head is quite soft and seems to be the source of her discomfort when she is in the wrong position. But lying on her side has become her favorite thing, and we try to hold her and feed her that way as much as we can.

I don’t know how long we will have with her once we go home. Truthfully, I’m so thankful that we can take her this weekend, because I really want to take her to church. Knowing how much changed in her brain and in her over the past couple of weeks tells me that a lot can happen very rapidly. My prayer is that she at least sticks around for Nana and Papa (my parents) who come in on Monday, but I also hope she will be with us longer. We just don’t know at this point. Meanwhile her Papaw (Travis’ dad) is here now and spending time with us and her this weekend. And with the help of the nurses here we’ll give her a bath tonight so she can go home clean and smelling good.

Tomorrow we meet with the representative from hospice to sign a bunch of paperwork. Samantha will have her central line taken out. And then she will ride in the ambulance back to Huntsville, probably with me while Travis and his dad drive the car. It will be the first time Samantha or I have gone home in over a month. I’m looking forward to it.

Blog Post originally titled, “An open heart”:

I’m tired. That’s the only thing I feel right now is tired. It’s funny, a while back I was hoping to do something with this blog where I wrote more frequently and had more readers. I can’t say that I’d pick the way all of you came to be reading this, but I’m amazed at the jump in traffic to this site in the last month. Samantha’s little life has touched so many other lives, and I can’t tell you how many messages I get that start with “you don’t know me, but…” Some people will give the name of the person who directed them, and I’ll think, “who is that?” Which means that friends of friends are telling Samantha’s story. That amazes me.

When I write these posts, to be honest I don’t have an agenda or plan. I just sit down and write from the heart, the things that are coming to me as I type. Some days the first paragraph comes from thoughts that roll around in my head during the day. Other days it just all flows out in a river of tears from my heart that breaks and is mended and breaks again, a hundred times a day. I feel peace about where God is leading us. And then the next minute I’m instinctively, almost habitually, doing something to care for our daughter, perhaps picking her up. And it’s in the intersection of those two that I fall to pieces. I can’t reconcile the fact that my daughter is dying with the image of her in front of me, living and breathing. I told the doctors in the room yesterday that seeing the MRI scans makes me wonder how she can even open her eyes. But then I hold her and see her eyes and can’t imagine that there’s so little of her brain remaining. She is declining – that we do know. But we are loving her and holding her and enjoying the times she is awake so much.

I’m thankful I had this blog set up before all of this happened, and that I’ve found the words to pour out into it. The truth is, if nobody but my husband ever read them it would be worth it. Someday, I can go back and see for myself what we went through day by day. I can’t begin to do that now, but someday I will reread them. In a lot of ways writing out my feelings here has kept me from being overwhelmed by them. I type them, hit the publish button, and it’s like I’ve released those emotions, if only for a brief time. It’s allowed me to feel each day’s emotions instead of the entire pile of feelings that have been building over the past several weeks. I’ve cried as I typed, and I know I will cry later on when I go back to read the words. And that’s ok, it’s part of the journey we’re on. I’m so thankful all of you are walking this road with us.

I hope that ultimately her story points others to Christ and His amazing love for us all. I never expected that I could be strong enough to go through this ordeal. In fact, if I would let myself stop and think about the whole picture of our lives, our struggles with having children, our losses, I think I would fall apart. Many of you know about our son Jonah, who was stillborn at 30 weeks eight years ago. I spent so much of my pregnancy with Samantha being terrified that she would die in utero. Now I am only thankful for the time we’ve had with her and the time we still have left, however much it is. And I know people keep telling me I’m strong. I don’t think it’s my strength. It’s Christ holding me up, keeping me from falling over in despair. It is His love for me that is keeping me moving and talking and even laughing at times. I still cry a lot, but I also don’t let myself think about the total picture very much, which also keeps me from falling apart. I have to be here for Samantha right now, so falling apart isn’t an option. I can do that after she’s gone.

Don’t get me wrong, I still hold her and cry. But right now I have to hold the full weight of my grief at arm’s length, just to be able to enjoy the time I have with her. Otherwise I think I might be tempted to set her aside and wall off my heart to my daughter to keep from adding to our relationship. It’s what I did during my pregnancy “just in case” something happened. I didn’t want to get too attached to her so I didn’t let myself feel much about her. But I don’t want to do that now at this point in her life. I WANT to enjoy her and make new memories, no matter how much that may bring me pain later, because it will also bring me joy both now and later. And that is the gift God is giving to me. He is keeping my heart open to her.

Next post coming tomorrow.