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.
We had gotten a couple of phone calls from random organizations during the last days of Samantha’s life, and I was absolutely livid. We had not contacted them, nor had anyone reached out with our permission. We had a friend or two at the time with children who had significant disabilities related to hydrocephaly, but their particular conditions were not the same as our daughter’s. I did my best to set boundaries in my first post of the day, although I still remember family members asking me pointedly if I really wanted to post it. But it’s part of the journey, so here it is, the CaringBridge from June 28, written by me earlier in the day:
Just wanted to write a brief note this morning after a couple of situations popped up in the last couple of days. First of all, thank you all for your support and willingness to help. I think I need to clarify some things about our daughter’s situation, especially for those who have only recently been connected to our caring bridge page.
Samantha’s condition is terminal. We spent significant time meeting with doctors and specialists and we saw Sammy’s MRI scans. Yes, her diagnosis is hydrocephalus, which can sometimes be treated with a shunt. However, in her case the amount of brain damage was too great and there is already a blockage in her brain preventing the CSF from draining. That is why they could not do a shunt, because the same protein that blocked the normal flow of fluid would also block the shunt. We saw two MRIs of her head, side-by-side. In 19 days time, her head went from having brain matter to having mostly fluid. When we left the hospital she had only a thin layer of brain matter surrounding a great deal of fluid. Her brain stem remained intact, which has allowed for her life functions to continue. We could have stayed at the hospital and kept pursuing treatments that would have prolonged her life but meant gradually relying on machines more and more to keep her alive. When given the choice, we decided to bring her home with hospice care and enjoy the rest of her days with our goals being to hold her and keep her comfortable.
I realize that some of you have children with a similar diagnoses. Unfortunately for us, the treatments that can work for this were not possible for our Samantha. We trust the medical team that helped us, a group of many specialists from neurology to infectious disease to general pediatrics.
Please check with us before referring us to any organization, no matter how much you think they might be able to help. And please realize that we have done everything possible medically for our daughter. We did not give up on her – we are just trying to soak up and enjoy every last minute we can with her during her final days.
Finally, I don’t want to make anyone out there uncomfortable or worried that they have somehow offended us or overstepped their bounds. We are so thankful for everyone praying for us and walking through this journey with us. God bless you all.
Later on June 28, I wrote a second post, giving a general update:
Another day means another day with Samantha. Our nurse officially gave up on predicting when it would happen. We are definitely in the end stages, but how long she will last is impossible for us to determine.
Our days at home feel very similar routine-wise to being at the hospital. Life revolves around Samantha’s medicine and needs, or sleeping or holding her. But there is one major difference, the difference that hospice has given us. We are HOME. The furniture is ours. We have all of our clothing. I can do our laundry whenever I want. It’s our kitchen, where we can eat without forking over money all the time (though we do pickup fast food from time to time). We have our cable (with DVR!) and know what channels to find our favorite shows. We have our movies, our music, our internet (way faster than the hospital), and we can get our mail every day. Being home makes all of the difference in the world.
Plus we have gotten to spend time with folks from church so much more than we could in Houston at the hospital. I understand – it’s so much easier to run across town for a quick visit than to spend at least an hour each way to drive to downtown. Plus parking and walking through the hospital. And we get to spend every day with Travis, too. When Sammy was in the hospital, we were without Travis anywhere from one to three nights a week, depending on church responsibilities. Now he can take care of the church and still be with us. It’s a gift for him too.
Every moment of this past month has been such a gift. It was one month yesterday since we brought Samantha home for good. I never expected to be given so much time with her. In fact, the other day it occurred to me that we’ve actually had her at home (total time) more than in the hospital during her life. I’m so glad to have more home memories than hospital ones with her. This morning I took advantage of waking up early and “kangarooed” with Samantha for an hour. I hadn’t done that since before she got sick, way back when I was still breastfeeding her. It was heavenly. I’m so glad I was able to do that now. And apparently I inspired Travis because he did the same with her after I got up.
Last night was pretty special for our family. We honestly thought Samantha’s last hours were upon us, due to her breathing difficulties and the fact that she was very much awake. So we sat up in the living room, listening to music, sometimes singing along, sharing memories of growing up – me, my sister, my parents, Travis, and Mark (the girls were asleep in another room). Everyone slept at our house, just to be close to Sammy. And she is still with us today. We continue to praise God for each day we are given. And we continue to check her breathing, which is sometimes shallow, sometimes deep, sometimes fast, sometimes slow, sometimes labored, sometimes easy, sometimes clear, sometimes filled with wheezing and coughs. There are moments when she pauses in her breathing long enough for the person holding her to wonder if this is it, and then she takes another breath. I keep whispering to her that it’s time to go see Jesus. I want her to know it’s okay to leave us. For whatever reason, God sees fit to give us a little more time, and we continue to cherish it.
Next post coming tomorrow.