An update has been brewing in me for some time but I feel like I’ve hardly had a chance to catch my breath over the last month, let alone sit and write with two hands.
It is a rare moment, where Nora is asleep in the middle of the day in her co-sleeper and Kali has just fallen asleep on the recliner in the front room.
Therefore, I have two hands free and can focus on writing to all of you (in between worrying just a bit that Kali is coming down with something since she NEVER takes naps anymore).
It’s been a busy day around here, with more activity than we have seen in months. A group of persons from our church community came out for several hours to help sort and load junk from our construction project onto trailers and a pick up to head to the dump. We have wanted to get our property more ready for outdoor play and it will feel so good to have more of the safety hazards cleaned up. But even more than getting a lot of work done, it felt wonderful to have members of our community at our place and in our home. Nora seemed less bothered by the activity than some times and was even quite engaged being held by Ed Yoder, a good friend from our church. We enjoyed lunch together, much of which I can also not take credit for. We are so eager for the day when our family is at a place where we regain the energy to start giving back. We have gotten so much practice being on the receiving end of help and while we continue to very much feel the need for it, we look forward to the day when we find ourselves at a different juncture in the journey.
This update comes sandwiched between two appointments. Yesterday we were at Nora’s pediatrician for her 6 month checkup – including one vaccine and her last Synegis shot. The doctor noted that she really seems to like being 6lb 9oz (which she has been for about 3 appointments now – spanning close to 1.5-2 months). He also noted that her skull bone continues to grow slowly and her umbilical hernia seems to be lessening. The quote we took away from the appointment was him noting that, after checking these two things, “her pieces are coming together nicely.”
Since we head to UVA again on Monday, he didn’t need to respond much to her lack of growth – knowing we would be addressing many of the questions swirling around that issue soon. We’ll head out early Monday morning, leaving Kali to play with neighbors and good friends (Kristin and baby Phoebe, who seems increasingly entertained by Kali’s presence). We meet with a pediatric gastroenterologist at 9:30am, followed by a pediatric surgeon at 10:30 and an 11:30am appointment to have an upper GI done. All three appointments are to help us assess if the next best step for Nora is a feeding tube.
Both Jason and I feel apprehension about a pending surgery on Nora’s little body. We also feel like we are not sure we can keep going indefinitely as is, if growth is essential (as it seems it is) and all my efforts are merely aiding in her maintaining weight. Maybe it is better to say that we are not sure I can keep going as is. I’ve had Nora with me pretty much 24/7 for the last month plus and I have reached a new level of exhaustion, at home and at work.
It’s hard to say this (knowing that a number of CJP folks have requested to receive these updates), but I’ve had a hard time lately not wishing very much for a job flipping hamburgers or something that I could care less about. Up until this point I’ve had very few moments feeling anything but awe in the fact that I have a job that seems to fit me so well and that I love and feel so deeply committed to. However, getting to a place with our family where I feel so needed on so many fronts and feel like I’m now trying to balance a job that I care deeply about and a family that I care deeply about, I feel torn in ways that at times feels almost unbearable. It doesn’t help of course that I’m right in the middle of one of my busiest work times of the year, second only to new student orientation in the fall. Next Sunday is graduation and we’ll be graduating and saying goodbye to over 25 CJP students. A week after that we welcome to campus persons from countries all around the world who will be taking part in our Summer Peacebuilding Institute. It is an exciting time of year and exhausting, and this year I find myself just wanting to make it through, to not let people down, and to make it a bearable time for both of our girls.
Nora has actually done incredibly well being carted to and fro for meetings and being fed while I try to type and do work with the free arm. We only had one mutual meltdown this week when she clearly wanted ALL my attention and that collided with a moment in which I had about ½ dozen projects started that I desperately wanted to get done before the end of the day (to avoid coming on in the weekend – which did not happen).
For the most part, though, she seems to have adjusted well to my office. She even has her favorite bulletin board that she coos at consistently whenever I go by. And she has become much more talkative. She is much more expressive with us – both regarding her likes and dislikes.
As Nora approaches the milestone of her 6 month birthday, I’ve found myself experiencing sadness more than anything else. I wish that I was someone who didn’t struggle with dwelling on what could have been, but many days I can’t help but wonder what life would be like for our family right now with a “normal” baby. If every waking hour (and most hours at night) were not consumed for me with getting a few more cc’s of breastmilk in Nora with the hope that maybe, just maybe, she would gain an ounce and keep it on. If days weren’t full of trying to arrange and rearrange doctor appointments and making decisions we feel incapable of making because we don’t know enough about Nora and her condition (like the feeding tube).
One of the things I’ve found myself reflecting on over the last number of weeks is about how instinctual it is in us as human parents that our responsibility is to help our offspring to grow, and how difficult it is to not feel a very deep sense of failure when you are unable to make that happen. Kali grew by leaps and bounds as a baby and I never once doubted my ability to make her grow. I doubted my abilities in other areas of parenting, but for some reason this one seems to run deep and at the very core. Every time someone asks me how old our baby is, I feel like I have to add some kind of disclaimer before saying she is almost 6 months old.
And then I find myself wondering how I’ve gotten trapped into another set of norms that have been established by our culture and context – developmental milestones, what a baby should look like, what her relationship with Kali should be like. I’ve always been a sucker for “shoulds” and I feel like I’ve fallen captive to a whole new set of them. What I wish for myself is that I could come to a place of being able to fully embrace Nora and each baby step she takes. Most days I feel like I could get there, if only the feeding and growth issues could be sorted out to a point where we know we are doing all we can do to maximize her potential and are assured by someone with some level of expertise (who is that?) that we can relax a bit!
This week Kali was playing school with Jason and she wanted to play “hope management class school.” When asked how you play that she informed Jason that is it is the kind of school where you tell the teachers your wishes and the teacher teaches you how to make them come true. How I’d like to enroll in such a class!!
Well, my time with both hands and undivided attention is long gone. Kali is still sound asleep but I have a cooing wiggling baby on my lap. It is probably time to wrap this up, knowing that you’ll likely have a follow up update from us sometime in the next week after our UVA adventures.
Janelle (for the rest of the family)
It’s been a busy day around here, with more activity than we have seen in months. A group of persons from our church community came out for several hours to help sort and load junk from our construction project onto trailers and a pick up to head to the dump. We have wanted to get our property more ready for outdoor play and it will feel so good to have more of the safety hazards cleaned up. But even more than getting a lot of work done, it felt wonderful to have members of our community at our place and in our home. Nora seemed less bothered by the activity than some times and was even quite engaged being held by Ed Yoder, a good friend from our church. We enjoyed lunch together, much of which I can also not take credit for. We are so eager for the day when our family is at a place where we regain the energy to start giving back. We have gotten so much practice being on the receiving end of help and while we continue to very much feel the need for it, we look forward to the day when we find ourselves at a different juncture in the journey.
As Nora approaches the milestone of her 6 month birthday, I’ve found myself experiencing sadness more than anything else. I wish that I was someone who didn’t struggle with dwelling on what could have been, but many days I can’t help but wonder what life would be like for our family right now with a “normal” baby. If every waking hour (and most hours at night) were not consumed for me with getting a few more cc’s of breastmilk in Nora with the hope that maybe, just maybe, she would gain an ounce and keep it on. If days weren’t full of trying to arrange and rearrange doctor appointments and making decisions we feel incapable of making because we don’t know enough about Nora and her condition (like the feeding tube). 
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