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.

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