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.

CaringBridge post from June 16, written by me:

Last night was the worst night we’ve had yet. For some reason, my cell phone (on which we rely for alarms for all of Samantha’s medication and feeding) failed us. So we were woken half an hour after she was due for her morphine to her cries of pain. We got her medicine into her as quickly as possible, but it took almost two hours to calm her down. As part of the process, we gave her some anti-anxiety medicine that she has on hand for occasions like last night. Unfortunately, in the bleary-eyed, middle-of-the-night sleep-deprived state that we were in, we accidentally gave her much higher than the prescribed dose, missing a decimal point. When we realized it this morning, we called the nurse, who talked to the doctor. Thankfully the dose was not damaging, just sedating. So Samantha has slept all day today.

While the pain in the middle of the night and the worry about the med mix up did cause us a lot of anxiety, it’s been nice to see her sleeping so peacefully today. The nurse did stop by to check her out, and she is doing fine. In fact, her respiration rate was better than yesterday!

Other than that, not much is new. We plug along with medicine and formula and changing her diaper occasionally (though not nearly as often as before). We try not to think about the reality that this is moving us towards, because if we think about it too much we’ll fall apart and miss what is left of her life. So much of our lives feels like it’s on autopilot. But we cherish every moment we can spend with her lying on one of our chests, holding her little hands. She is so sweet and we love her so.

CaringBridge post from June 17, written by me:

Sammy had a pretty good day today. She did a lot of sleeping, but she was awake for a few brief periods of time. She also slept pretty well last night. So health-wise it was good.

Today we also had a few visitors. Allison, Mark, and the girls as usual, and of course Nana who is staying with us, but some folks from church also stopped by and held Samantha. For a while this afternoon Travis and I had just Samantha and her youngest cousin who is 13 months old.

Meanwhile we just plug away. Sometimes it feels like nothing is wrong, and then tonight Rachel (4 years old) was spending some time kissing Samantha over and over and asking about her dying. She was so sweet, and said she didn’t want her to die. I was trying to hold back the tears as she talked. This is so hard on the girls, and probably on her cousins who are in Tennessee too. But I know especially Allison and Mark’s girls have been around her during her whole life, and we had talked about them playing with her when she gets older. We are all struggling with letting go of our dreams for Samantha, and I know for the girls that is true, too. Plus for them, when Samantha has a bad day like she did a week ago, we shuffle them out the door. It’s got to be scary. And to top it off, their dad had surgery last week. How do you make children understand that while Samantha is not going to get better, their dad still can?

In the meantime, we keep encouraging the girls when they want to come and touch or kiss Samantha. Micaiah got to hold her hand briefly today too. And we try to get pictures of all of these things. Everything we do right now is either about making Samantha comfortable or making memories to hold onto later. I dread the future and yet I pray for it to come quickly every day. I really want to keep her with us but I also don’t want her to suffer (nor do I want to see her suffer). Each day we wake and wonder if today will be the day. Whenever her breath gets wheezy, my breath catches in my throat wondering if she won’t be able to recover from this episode. Whenever we wake at night and she’s quiet (she makes a lot of little noises while she sleeps) we check to see if she has died in her sleep. And we are preparing for the end in other ways, like checking wardrobes for funeral clothes and contemplating who we need to call with details.

I cannot tell what is harder – losing a child suddenly or losing one slowly. We have done both, and they are difficult in different ways. I am so grateful that Samantha has stayed with us for these past eight weeks rather than dying in the ICU. I would not trade a moment of it. But I know when it is done, while we will be sad and wish she didn’t leave us, I will also be at least a little bit thankful that she is finally safe and free from pain.

CaringBridge post from June 18, written by me:

Another day with Samantha – another day to both give thanks and to pray for her ultimate relief from pain. She slept the day away, and then around 6 tonight woke up and started to have some difficulty with secretions and breathing again. It’s so hard to listen to her wheeze. We noticed that she had similar difficulty at 6 this morning too, so I’m thinking it’s because both of her pain medicines are due at that time. Normally she has some overlap because one med is every six hours, one is every four. But at 6 am & pm, she gets both. Which means that she has a brief window of break-through pain potentially. While we could give her meds half an hour early, that’s a vicious cycle to start.

She seems to be more relaxed now, though. We spent the day with family again, and enjoyed a visit today as well. We’ve been so overwhelmed by the things people have done for us and brought us, so many needs that have been anticipated and met – how do you begin to say thank you for it? We are also enjoying a bit of relief as our air conditioning is working better after a cleaning and a freon refill. Our house was cooling somewhat but not well, and now it is actually feeling cool again. Much more comfortable for us and Samantha.

Tomorrow is church again. Going with Samantha is a bit more involved than it once was, but I’ve gotten pretty good at packing up what we need the night before. So this evening after I filled all of her nighttime medicine syringes, I also packed the diaper bag and her medicine tub. All we need to do with her in the morning is get her changed (diaper and clothes) and put her into her car seat. And then we get the blessing of worshiping with our church family. I have missed them so much this year. And to top it off, tomorrow is Father’s Day! Travis said the best gift would be for Sammy to go be with Jesus, but I am thankful that he will get to spend one Father’s Day with his daughter. I was so blessed with the same gift back on Mother’s Day. I don’t think either of us expected her to stay with us this long, but we continue to thank God for each day we are given.

Next post coming tomorrow.

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