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.

Looks like I actually got ahead of the calendar, so we are back to one post per day. I will still be combining posts from a few days, especially since towards the end of Samantha’s life, the posts got shorter. We spent more time focusing on being present with her. In addition, as she slipped away, there was less and less to share with friends and family. We are headed into the final weeks now.

June 23 CaringBridge post, written by me:

We’ve exceeded 55,000 visitors to this page. I don’t know if it counts each visit from each of you once, in which case that explains the daily increase. But it is still amazing, regardless of how the number is tabulated. I am thankful that we can share our story, Samantha’s story with all of you and that she has touched so many lives. Yet I would truly rather she was an unknown child if it meant we could keep her with us. I am so aware of eternity when I look at her life, which is now 105 days. I’m counting the days now since she will have as many days as some folks have years (give or take). Or if you like, she is 15 weeks old today. And this is how her life breaks down in weeks:

1 week of NICU/hospitalization after birth
5 weeks of health at home
5 weeks in the hospital
4 weeks at home with hospice

How long will that final segment of her life be? We do not know, and won’t until the end comes. We are so thankful for our hospice nurse who is truly a caring person. She lost one of her other patients this week, we know because she left me a message today and asked us to pray for her when she was here yesterday. She is heartbroken by the loss and I know she will feel the same about our darling Samantha when the time comes.

Today our Sammy slept a lot. Her medicine generally keeps her sleepy now, but it means she is mostly peaceful too. We continue to feel the affects of exhaustion with her schedule and try to enjoy as much time with her as we can day and night. And she has had the hiccups for most of this evening. While I wish she didn’t have them (I know they must hurt her head), it is a little thing to smile about for me because she had them frequently in utero. We will do her medicines and feeding tonight and start the cycle again tomorrow morning. Our routines revolve around her, trying to keep her from experiencing pain as much as we can.

Our entire family has been living in transition for some time now, and I think we could write a book on various kinds of transition – moving, healing from surgery, pregnancy, retirement, dying. And each new transition makes us all take a long hard look at life and the priorities we think we have. I find myself much less materialistic than I was and also not worrying so much about money or possessions. They just don’t matter. But most of all I end up thinking about how short our lives are in the light of eternity. Samantha is showing me that every day with her life. While we all mourn that hers is so short, the number of days, weeks, months, or years each of us is given in this life is short compared to heaven when we won’t be counting. Someday I will get there and run up to my children, telling them I’m sorry it took me so long. And they will look at me and tell me they haven’t been waiting long at all to see me.

My niece Gabie asked me something the other day about this (she’s 5) and then said, “maybe God doesn’t want you to have kids.” It sounds like something that would sting, but actually it got me thinking. I used to think it wasn’t in God’s plan for us to have kids, up until I got pregnant with Samantha. I pondered what Gabie said for a while and I wish I would have said to her, “God knew Samantha needed a mom and dad who would love her enough for a whole lifetime in just a few months.” I know He loves us and loves her, and while I cannot begin to understand why all of this is happening (and probably never will) I know that love is the center of it all. We don’t serve a heartless, faceless God but one who sent His Son into this world to live, to cry over death, to suffer, and to die Himself. And it is through His resurrection that we have hope and know that we will only kiss our daughter goodbye for a short time.

June 24 CaringBridge, written by me:

In the last couple of days Samantha has started hiccuping quite a bit. We called the nurse today to ask about it, and learned that this is another marker that she is declining. We still don’t know when, we just know it’s getting closer to the end. Meanwhile her medicine keeps her pretty sleepy, and her schedule keeps us pretty sleepy.

That being said, Travis and I took advantage of the presence of extended family and left Samantha in their care for a few hours to get out alone together. This was the first time we had done that since we brought her home four weeks ago. While it was mostly running errands, we did get some dinner together mid-afternoon and talked a bit about our thoughts for music and readings for her funeral. All of these things that really do need to be decided, but we want to have as much done as possible ahead of time. The funeral home director is emailing Travis the preliminary sketches for the headstone, so that will be in process as well. I suppose all of this is one of the blessings of knowing in advance that she will die, because we can get a lot of prep done now when we are a little less emotional.

Samantha gives us so much joy each day, though unlike most new parents we are not witnessing new developmental achievements to get excited about. Rather we keep noticing new elements of her slipping away. And we are thankful for this gradual process, because she is comfortable. She is such a good snuggler! Technically she doesn’t do much physical snuggling but we all love to hold her close and give her kisses. She seems most comfortable laying on someone’s chest. Diaper changes and movement continue to make her uncomfortable. Sometimes she just looks miserable, but other times she will cry briefly. The crying is short, however, because it hurts her.

So we keep going with each day, giving her meds and food, sleeping and waking to see if she’s still breathing. Her breathing is much more shallow now so it’s sometimes hard to tell. Her head often feels cool to the touch as well. We go through the motions and we keep track of her increasing load of medicines, and we try to rest whenever we can. And we wait for the day that Jesus finally takes her home to be free from the pain that she experiences so much in this life, knowing that is when our pain will really set in. I guess that is the one place I get my wish of trading places with her, living through the pain of missing her so that she can be free from pain.

June 25 CaringBridge post, written by me:

Today Samantha’s Nana and Papa celebrated their anniversary and Nana’s birthday. So we didn’t see them during the day much today, but that’s ok. Allison came up for a bit to sit with Samantha, and we had visits from some members and a pastor and his wife from Houston. Then we spent part of the evening at Samantha’s godparents’ house, finally meeting their month-old grandson. Wow, the differences we noticed between him and Samantha! Her hands and feet are tiny and her head is huge in comparison to him. This was the first time we were around another newborn in quite a while. And our Sammy is actually over three months old!

Meanwhile she is getting a little worse each day. Today was pretty difficult for her – lots of trouble breathing, and she is now getting ativan four times a day. But the secretions continue to build up in her throat and she wheezes a lot, sometimes sounding very congested. We had to suction her a few times and also help her cough up some junk. We know some of it is starting to get into her lungs. The nurse called us today about some medicine issues and she said from all we are seeing, it probably won’t be more than a couple more days before she is gone. So we will check her each time the alarm goes off tonight and wonder if this is the night, if we will wake to find her gone. We still pray that is what happens rather than having to watch her struggle to breath and eventually suffocate. It would be much more peaceful for her to stop breathing in her sleep. But we don’t get to decide how this happens. I spent last night praying in turns that God would spare her life and then that He would take her home. I still wish she could be healed but I know that isn’t very likely at this point (obviously with God all things are possible). I just don’t want to see her in pain, in this middle ground between life and death any longer.

Tomorrow we will go to church again, God willing, and share our little girl with the congregation. Yet I also find myself praying that God will be willing to take her from this life during the night so that she can be free from her pain. O Lord, hear my prayer!

Next post coming tomorrow.