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.
As I look back on the things we wrote during our time with Samantha, I can see how much it was about connection, community, and longing for fellowship with others. Both this CaringBridge post from May 17 and my blog post that follows it reflect that need.
I’m a big chicken. I’m writing this post from the waiting room of the hospital, hiding out so I don’t have to listen to my daughter scream while she gets her two-month vaccines. I just can’t handle hearing her scream any more, and I know that’s not fair to her but I also don’t want to add my anxiety to hers. So when they came in to give her the five shots she needs, I left the room with my computer.
Each day that we are here, I find myself adjusting more to the flow of life in this place. Feedings, medicine, naps, etc. The staff is wonderful about not waking us up in the mornings, so we generally manage to sleep (in 2 hour increments) until 9 each day. Then we hit the ground running, feeding her, eating breakfast, seeing doctors, showering (often this is the last thing on the list). One therapist or another comes in at some point, usually around 11:30. Then we feed her at noon and usually go out for lunch, either alone or with someone who comes to visit. By the time we come back, the CNA has given Samantha a bath and tucked her back into bed. She smells like a baby for a brief window, until the antibiotics that seem to come out of her pores start to overpower the baby smell. Not that we’re complaining about it, they are what saved her life and are killing the infection.
We miss everyone. It seems strange to feel like we’re so far away from home, but we know that it’s hard for people to come down to visit for a few hours when the drive is more than an hour each way (sometimes two with traffic). And I still don’t want to leave for a night. Maybe if the timing worked better, but it’s complicated when Travis already goes home twice a week. For me to go home too would require the two of us being apart more, and that is something we don’t want to do.
Samantha is doing well with her therapy – they’ve started to use these vibrating toys to help her turn and respond to stimuli since cues through vision and hearing haven’t been the most successful. We know she can hear because loud noises make her jump, and we know she can see because she reacts to light. But she is sleepy a lot of the time and we don’t know how clear her vision or hearing are. She is maxed out in terms of the anti-seizure medicine, which is why she is so sleepy. We worry because she’s not at the level in her blood stream that the doctors want, but the team is discussing and getting back to us about it. So far we haven’t seen any seizures since that last weekend at the hospital, but we know she can be having sub-clinical ones that are not evident to us. We pray that God is healing her brain from the irritation that causes these seizures so that she doesn’t have them any more, but only time and tests will tell us that. Meanwhile she is calm except for diaper changes and seems to be having longer periods of awake time where we interact with her and do some of the exercises that the therapists have taught us for her.
Thank you all for your prayers – we appreciate them so much. I know there are a number of you who look forward to these posts every day. Please try to write us, either in the guestbook or via facebook or email and send us your thoughts and encouragement when you can – we crave that as much as you want to read these updates! Thank you!
Blog post simply titled, “Thank you,” from May 17, 2011:
I started writing thank-you notes today. It’s one of those things that I know is good to do to let people know they are appreciated, but I still dread doing and put off as long as possible. I had gotten caught up while I was in the hospital, up until a week or so before Samantha was born.
Once we had her and went home, I gave myself some slack to adjust to life with a newborn. After all, I was exhausted! Showering and eating were often the last things on my priority list. Things like thank-you notes had to wait. But then after a few weeks I started to get organized again. We opened gifts, and I made my list. I even washed the baby clothes that were in sizes that could fit her in the next few months (why wash the 3-6 month sized stuff when it will just sit around for a while?) and put everything away. I’m sure that burst of energy to get organized was a gift from God, because the week she got sick I wasn’t feeling so hot either. Laundry fell behind, and then we were in the hospital. At least the biggest issue at my house was laundry – and my mother is willing to take care of it. While my parents were here mom got the laundry stuff taken care of. It’s just nice to know that with everything else going on, I don’t have to return home to absolute chaos. I know there are things I will still need to do, like packing up the breast pump and parts or beginning to file the massive amounts of paperwork we are already starting to accumulate. But all of this is stuff that has come up since she’s been sick. I’m not also sitting on a pile of things that didn’t get done beforehand.
Except for the thank-you notes. But today I got organized for that, too. I took my hand-written list and put it on the computer so I could sort it (some people have given things more than once). And then I wrote 8 thank-you notes. My goal was to write five, but since the package had 8 I figured why stop before they are done? And because some wonderful new friends brought me stamps, I addressed them and they are going out with tomorrow’s mail! 8 down, 50-some to go. And I don’t have to mail all of them, either. I plan to work on the church family ones over the next few days – hopefully I can have them done in time for Travis to take back and put into mailboxes next Tuesday (I’m not going to push myself for Sunday at this point, that would be too much).
Please don’t misunderstand me, I am completely grateful for the outpouring from each and every person on my list. That’s part of why writing thank-yous gets to be so daunting for me, because I can’t just write the same thing to each person. I could (as in, I am able to) create a pat message and tweak it slightly for each individual. But it feels wrong to me to do that. So then writing 60 separate, individualized thank you notes becomes a mountain. That’s why I’m breaking it into manageable portions, so I can spend time thinking about what I want to say to each person instead of cranking out an assembly line.
And if you are reading this, have given us something, and haven’t gotten a thank-you note within the next month or so, PLEASE let me know. My mind is so scattered that I am sure I’ve forgotten to write down at least one person who deserves to be thanked. The oversight is not intentional, it’s just based in the stress and exhaustion we’ve experienced over the past few months.
That being said, I want to take this opportunity to thank all of you for reading and commenting and supporting us. As I wrote on our caring bridge today, please write comments, send messages, whatever. We love to read them as much as you enjoying reading our posts. Thank you!
Next post coming tomorrow.