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.

I wrote a blog post and a CaringBridge on June 6. First up is CaringBridge:

Today was a rough one, especially for Travis. He spent some time with Samantha one on one this morning while I did some errand running with my mom and sister. I missed most of the nurse’s visit, but it was an important one. She’s ordered a hospital grade suction machine (whatever it’s actually called I don’t know) because Samantha is not able to handle her secretions very well any more, and using a bulb aspirator doesn’t work for getting the stuff out of her throat. In addition she helped us figure out how much morphine to give her as needed. She said that we are seeing the progression of Samantha’s illness and that it will probably be a matter of weeks, not days or months, which is apparently a good thing. If she were going downhill more rapidly (where it looks like a matter of days) she would probably be in a lot of pain that couldn’t be controlled as easily with medicines. If it was more drawn out, she’d suffer a great deal more (as would we, watching her die slowly). But it is still hard to watch her.

Part of the afternoon mom and I spent going through the baby stuff we have here. Some of it is new things from people, and a lot is hand-me-downs from my sister’s kids. I took tags off of some clothes that are slightly too big for her but will fit now (3-6 month size) and put them in the pile to be washed. I also pulled out of her drawer all of the clothes she’s already worn and put them with the clothes that are too big for her into a basket. When this is all over, I’m going to ask some of the women at church who quilt to take her baby clothes and maybe the swaddling blankets and make us a quilt. So I want her to wear as many of them as she can. She has a LOT of clothes that people have given us, so I figure she doesn’t need to re-wear anything at this point unless I get through the whole pile.

We took the stuff she can’t or won’t use and boxed/bagged it up and put it into the garage for now. I just need to have less in the house right now, so the only stuff we’re tripping over is what she’s currently using or has already used. It’s emotionally difficult enough to deal with those items.

In the meantime, Samantha had another spell of struggling to breathe, so we had to give her the first dose of morphine today. That was hard for Travis especially. Each step down this road is another step closer to the end of her life, and it hits each of us at different points. The other piece that we are now changing is spacing out her feedings a bit more. It’s a delicate balance between feeding her enough to sustain her and keep her kidneys functioning but not giving her too much which will actually cause her irritation/more secretions/breathing problems. So tonight we are going to space out her feedings a bit more and perhaps get a little more sleep ourselves. (Yeah, right. Like we’re not going to worry and lose sleep).

The nurse will call us in the morning to see if we need her to come again. It may not be long before we need her here daily. In the meantime, we hope the medicines for Samantha get here tomorrow – apparently there was a mixup with Fedex and they went to a different town in Texas. I got a call from them today asking about our street address but in a different town. They are going to get it here tomorrow (we hope).

In good news, Samantha is sleeping more, which means she’s less uncomfortable. This week will be particularly complicated for our family because Uncle Mark has his surgery on Thursday. His parents fly in tomorrow. We are all ready to be done with medical stuff happening and hospital stays, but we also know that this gift of medicine has been very beneficial to so many members of our family this year.

Blog post titled “Peace”:

Last night as I lay in bed, the words to this song began to wash over me. I’ve loved the song for a while now, but oh, the meaning it has now. To me, it feels like Samantha’s new theme song. Or maybe it’s mine.

Chris Tomlin’s “I Will Rise”

There’s a peace I’ve come to know
Though my heart and flesh may fail
There’s an anchor for my soul
I can say “It is well”

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles’ wings
Before my God fall on my knees
And rise
I will rise

There’s a day that’s drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles’ wings
Before my God fall on my knees
And rise
I will rise

And I hear the voice of many angels sing,
“Worthy is the Lamb”
And I hear the cry of every longing heart,
“Worthy is the Lamb”
And I hear the voice of many angels sing,
“Worthy is the Lamb”
And I hear the cry of every longing heart,
“Worthy is the Lamb”

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles’ wings
Before my God fall on my knees
And rise
I will rise

Most of the time I have this sense of peace about our situation, and it is completely from God. Who else could give it at a time like this? When I was in college, I helped with a youth gathering we organized every year for junior high kids. The one year, the theme was “How Big is God?” By the end of the gathering, the leadership decided not to use a question for a theme again, because of the temptation to answer it. I think that’s our human nature. The great questions of this life, about suffering and pain, about purpose and meaning, those questions of where do we come from, where are we going, why are we here, why do bad things happen to good people, where is God in the midst of our pain… To be human is to ask these questions. And in our sinful, fallen arrogance, we attempt to answer them. We want resolution. We want answers. We want to wrap it up with a nice bow and feel smug in our understanding. But one of the things I’ve come to realize over the past few years is that finding peace in not having answers is what faith is all about. We don’t know when Christ will return. We don’t know the mind of God. It is human to ask the questions, but it is only in God, and only in eternity, that the answers exist.