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. 

May 21 was a 2-post kind of day. First up is CaringBridge:

So many appointments are happening all of a sudden. Today Samantha had an EEG. It took almost two hours total. First they had to transport her to the lab (which is close, but we had some issues with the wheel locks on her bed not unlocking. Took a while to just get out of the room). Then there is the set-up, which is extensive. If you’ve never had or seen an EEG, there are all of these wires that have to be attached to the head in specific places to measure brain waves/electrical activity. In order to do that, they have to measure her head from forehead to neck and the circumference. Each wire is attached with some goop and a piece of tape. Then they add on a heart monitor since she doesn’t currently have one attached.

After all of that, there was a bit of discussion/argument between the tech and the nursing/respiratory staff about monitoring her pulse oxygen. They sent us with a portable monitor but the battery died before the EEG was even set up. So they tried to plug it in, but having electrical things plugged in actually messes up the EEG. They finally got one that worked without screwing up the test, but I’m not sure if that delayed the start of the test. The EEG itself lasted an hour, longer than any she’s had before (the ones at the hospital were about 45 minutes). Then they had to take off all the wires, which she hated because it ended up pulling on her hair. Poor thing. Since she was already upset, I changed her diaper before we wheeled her bed back to the room. At that point it was after six, which was the time for both her feeding and her antibiotic. So while the nurse hooked up her medicine, I got her bottle ready and we had her eating in no time. Since then she’s been pretty awake, until the last time I checked her a few minutes ago. She finally fell asleep. But while she was awake, she seemed pretty happy which is nice. It seems like in the evenings she does pretty well with being awake and content.

In addition to that, Samantha and I got a visit from Aunt Allison, Uncle Mark, and four little girl cousins today! It had been a while since we saw any of them. Between all of their family’s medical stuff and the fact that this week is the last week of school, it’s been hard for them to get down to see us since we moved to this facility. The girls got to play on the playground, Allison and Mark got to hold Samantha, and then we all went to lunch together (minus Samantha, who unfortunately has to stay put). I have been getting out for meals, briefly. I just can’t imagine leaving for more than an hour or so.

Tomorrow we’re looking forward to Travis coming back after services. It’s been a long weekend without him – normally he leaves on Saturday but he had two weddings today which meant two rehearsals last night. So he left Friday. I know he’s looking forward to coming back too. Then on Monday, Samantha has an appointment with an ophthalmologist to check her vision, and on Tuesday she has an MRI. Both of these are back at the medical center (where she was) so it will be two days of being transported back and forth in ambulances. Please keep all of these tests in your prayers. We are hoping for good news but also some answers to the symptoms we’re seeing, and these days those two are not always the same thing.

Second is my blog post from that day, titled “On my knees”:

I spent some time on my knees today, literally. It wasn’t planned, but while Samantha was having her EEG done, I wanted to stay close so I could keep an eye on her and comfort her if she got upset. After a while, standing by her crib started to wear on my feet, so I dragged over a padded chair next to her crib and knelt on it. What is it about that posture that just invokes prayer?

I find myself begging God to heal her one minute, and then feeling guilty the next for asking for such a miracle. As I’ve said before, why should we be spared the pain of all of these things? I know we are undeserving. Then again, so is every human being. It is so hard to be a Christian today. Between the world telling us that we believe in a fairy tale and then the fact that there are thousands of different interpretations of scripture out there, it’s hard to know what to pray for or even how to pray. One writer will tell you to pray for the miracle and expect it. Another will remind you to pray for God’s will to be done. Some will try to tell you that if you aren’t willing to believe God can do something, it won’t happen. Still others will say that God doesn’t do miracles today like He did in the Bible times. And when I try to pray for Samantha, my thoughts often get cluttered with all of this and a million other second-guesses I have created for myself.

The truth is, I know God is working/has worked/will work a miracle in Samantha. We see it already. We see it in how she was spared – if she had been at home when she stopped breathing, she would have died. I’m certain of it. We see it in the relationships that have been repaired, restored, or at the very least, thawed. Some were relationships that we thought were impossible to repair. Yet the very people we believed could no longer be part of our lives are praying for us and have reached out to us. That is a miracle.

I also know there are future miracles already being worked out – the hard part is not knowing what they are. Samantha’s miracles may include total recovery. Or it may be that her disabilities will point the way to Christ, for us and for everyone around her. Or perhaps even her healing will be total in terms of her going to heaven. We know eventually that will take place, but when is as uncertain as anything else.

I have to admit, a part of me was a bit disappointed that the kooks were wrong about today being the end of the world. It would have been nice to be done with the pain of this life and join in the biggest celebration of all. But God’s timing is perfect. He has a plan for this world and a plan for little Samantha. Not in the sense of needing to guess exactly what God wants us to do each day, but in the way he continues to mold her as His creation. Until I typed that, I didn’t realize that’s what He is doing. He is still working in her, recreating her, just as He is still recreating you and me. That work isn’t done until we leave this life. I don’t think I’ve been paying attention to that with Samantha. Instead I’ve been wallowing in the thought that God created her the way she was born, and then this disease destroyed the creation He made. While that may be true, God did not just put Samantha together and walk away. He has been with her at each moment, and whatever becomes of her brain, her abilities, her life – it is ALL in His hands.

Next post coming tomorrow.