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.
This afternoon’s post was one I wrote on this blog originally on May 24, which was one of the worst days of my life.
Today sucked. There is no other way to put it. I woke up this morning feeling like I was numb enough to deal with all of the stuff ahead of us. I thought I could handle whatever came, even with all of the bad news of yesterday and the tests that would ultimately confirm it today. But emotional bombshells can come out of nowhere and just blindside you at times like these. That’s how today was for me.
The morning was ok. We woke up, we talked with doctors, we had breakfast and got ready. I started our laundry (thank God for the hospital having laundry facilities for families – we missed that at HealthBridge). They came around 10:45 to take Samantha down for her EEG. I finally asked the nurse an hour later if they were going to take her directly from the EEG lab to MRI. She called and said yes but the EEG would be at least an hour still. That surprised me. So I went down there and they had just gotten all of the wires hooked up. The tech suggested that Travis and I go get some lunch. We opted to go to this little bakery/café in the parking garage building that we have enjoyed. They are only open through lunch but have really delicious soups and sandwiches. We grabbed a bite to eat quickly. On the way back, we glanced over to see a mom changing her baby’s diaper on one of the padded benches in the hall. We both noticed him at the same time, but suddenly I was overcome with emotion – he was so tiny, just like Samantha was when she was born! It was all I could do to stay upright.
We got back for the end of her EEG, and then off we went with the transport team to the MRI. While we waited for them to get ready for her, Travis and I took turns holding her. Samantha was pretty awake during that time, wide-eyed and alert. Such a gift. We kissed her as they wheeled her off, then headed back to the room.
I knew that it would be some time before they finished the MRI – they needed to do it with and without contrast, and it all just takes a while. So Travis waited here while I drove back to HealthBridge to get the stuff we left there yesterday. I found a nurse who looked familiar and let her know what I was doing, that the hospital said Samantha wouldn’t be going back there and that her infection was worse. Then I proceeded to pack up the room. Once again the emotions washed over me. I was overwhelmed by the task at hand. I started to think about the kids I had heard getting the big send-off from the staff, singing “Nah Nah Hey Hey Goodbye” and realized I would never hear that for Samantha. I also felt like a thief in the night coming in and hauling the stuff away. Other than the nurse I didn’t see a single familiar face in the halls. I didn’t really see anyone. It made me glad I went to get our stuff, because no one stopped me or asked what I was doing. So I guess someone else could have easily come and just taken our stuff out. But it was so hard to not talk to someone there who would understand, sympathize, or even feel bad about our little girl. I know some of them would have wanted to know what was going on with her. I finished loading and spent a few minutes crying in the car before I drove back.
Shortly after I returned, the doctors came to discuss the MRI results. The news is bad, worse than I could have imagined. Samantha has about 25% of her brain mass left. And her brain stem, which is basically sustaining her life, is apparently unaffected by this infection. I don’t know what scares me more, the idea that she could still lose more of her brain and continue to decline gradually or the idea that she could remain alive but unresponsive, without sight, hearing, or the ability to process thoughts or recognize us. Tomorrow we will be meeting with the whole team of doctors – neurology, immunology, infectious disease, pediatrics, etc. to discuss what all of this means for her, and the meeting will include palliative care to discuss hospice-type options. We will be making some decisions based on the medical team’s prognosis to set up health care directives. Since we learned of the meeting we have started our list of questions for the group. Meanwhile, we have two questions for ourselves that we will continue to ask for the foreseeable future:
- Are we prolonging life or are we prolonging death? This is a question Travis learned in his training for helping people in circumstances like ours, who have to deal with these end-of-life decisions. In other words, are we supporting the life of someone who is still with us, or are we artificially keeping someone alive whose body has essentially shut down?
- Are we doing things FOR Samantha or TO Samantha? This is a question posed by Leigh Ann, the child life specialist I mentioned in a previous post who called me a mommy. It helps me to think about the choices that will involve weighing side effects against benefits for her treatment.
Please continue to pray for us. Our little family is cherishing every moment together that we can right now. Travis’ dad is flying in this weekend, and my parents come back next week. We know all of these grandparents also want to soak up as much time with Samantha as possible.
Parenting a sick child is difficult. Parenting a child who is dying is impossible. Parenting a child who falls somewhere in between the two is utterly indescribable. The numbness has washed over me again and I can’t tell you how it feels today, except that one element is exhaustion. But I wouldn’t trade a single moment I’ve had with her for any amount of sleep.
The title of this post comes from a Casting Crowns song (yes, them again). It has been the song that has most often described where I am in my faith journey during this whole ordeal:
Somewhere between the hot and the cold
Somewhere between the new and the old
Somewhere between who I am and who I used to be
Somewhere in the middle, You’ll find me
Somewhere between the wrong and the right
Somewhere between the darkness and the light
Somewhere between who I was and who You’re making me
Somewhere in the middle, You’ll find me
Just how close can I get, Lord, to my surrender without losing all control
Fearless warriors in a picket fence, reckless abandon wrapped in common sense
Deep water faith in the shallow end and we are caught in the middle
With eyes wide open to the differences, the God we want and the God who is
But will we trade our dreams for His or are we caught in the middle
Are we caught in the middle
Somewhere between my heart and my hands
Somewhere between my faith and my plans
Somewhere between the safety of the boat and the crashing waves
Somewhere between a whisper and a roar
Somewhere between the altar and the door
Somewhere between contented peace and always wanting more
Somewhere in the middle You’ll find me
Just how close can I get, Lord, to my surrender without losing all control
Lord, I feel You in this place and I know You’re by my side
Loving me even on these nights when I’m caught in the middle
Next post coming tomorrow.
Blooming Joy! 