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While outside playing a while back, a six-year-old neighbor girl was playing with K and asked me, "When is your baby going to grow up?" I love that she asked me that. And I wish I knew the answer!
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Surprisingly, one of the most stressful things that I did with Keira recently was taking her to the zoo with me while chaperoning Ronin's field trip. I spent the day with a sizable group of parents who don't know me or Keira. I had a resurgence of that uncomfortable feeling like everyone's looking at her, wondering what's wrong, etc. etc. I feel like I want to just launch into what's "wrong" with her to just get it over with, but I don't. I know it's more awkward for me than anyone and that I'm assuming people are way more curious than they actually are. It was uncomfortable for me, nonetheless and I was always relieved when someone would just venture to ask, "What does she have?" I also had a strange moment when Ronin came up to me to say, "The other kids are laughing at Keira." Ug! "It's begun," I thought. Ronin couldn't tell me why they were laughing or what they were saying, so I opted to give them the benefit of the doubt and just told Ronin to ignore them.
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A few weeks ago I had a "normal" day that left me feeling victorious for several days thereafter. On that particular Friday, I used very little of my mom's help. I ventured to take Ronin and Keira with me on a shopping trip to Costco. I figured a new way to try to transport her and Ronin thought it was great, too. It was a little cramped for groceries, but grocery shopping felt like a very normal thing to do. To top it off, I took the two of them swimming later that day. Keira seemed to really like the water (but if I had a dollar for every time someone thought she was "asleep" on the kick board!!)
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I'm loving the "baby spanx," a.k.a. Theratogs. We've had a bit of trouble getting them to fit comfortably around K's G-tube, but they really make a difference! The extra snuggness around her middle has Keira moving her arms and legs more and she is holding up her head again like we haven't seen in months! See that little push up on my lap? That's huge progress!
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People ask how Keira is doing and I'm never quite sure how to answer the question. She is happy and healthy, but she is hardly developing, it seems. The biggest concern right now is her eating. All in all, she isn't eating any more than she did before we started tube feeding. The GI doc and I are at a loss as to how she has gained any ounces at all (she is currently at 17 lbs, 5 ounces, and 20 months old). The GI has concluded, and I now agree, that we have been underestemating the severity of K's reflux all along. This would explain why we can't get her to eat any more and why she has been throwing up blood. Apparently her esophagus is eroding. Yikes. So, here within the next few weeks, she's going to have the full meal deal, a full service and lube, a surgery with several procedures. She'll be getting the nissen fundoplication to prevent her from being able to vomit. At the same time, they'll replace her G-tube with a less conspicuous "button," take out her adenoids (which, apparently, at 95% enlargement, are much of the reason for her endearing snort), replace her ear tubes, a tummy tuck, and a nose job (just kidding about the last two).
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| Easter |
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| Blissful with Daddy. Always. |
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Mom and Dad have been having a spectacular vacation in Italy. Gone for three weeks, this is quite an adventure for me, as well! I am accustomed to having my mom over for at least a couple of hours nearly every weekday. I tend to feel a little guilty about that, always wondering if I should be able to do all this on my own, yaddah, yaddah. My first full day alone with Keira after they left for vacation was eye opening for me and a kick in the pants. Keira and I spent the whole day out and about. Errands, therapy, a doctors appointment, and a "fiesta" at the boys' school. She seemed to do great...until that night she spiked a fever of 102 and kept throwing up. Jeff and I both agreed that she did not come down with the flu or anything else. Her little system had just had more than it could take that day. With rest, she was fine again within 24 hours and I am newly at peace with the idea that I need help with my kids every day in order to do everything that needs to be done.
I have had plenty of help while Mom and Dad have been gone, but it isn't the same. K doesn't usually eat a lot, as I mentioned before, but she will go 10 hours with a babysitter and eat absolutely nothing. She's a bit more discombobulated, being with different caregivers, even though they are people she knows. She's regressed to some pretty primitive reflexes, going back to being really easily startled, etc. I'll be happy to have Mom and Dad back and so will K!
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A couple of very hopeful things have happened recently. Two days ago, Jeff and I were playing with K on the floor and she crawled. Seriously. Well, not the way you're thinking, but huge for her! On her belly, she bicycled her legs, gripping the floor and eventually working herself across the blanket without the help of her hands. She looked pretty proud of herself, too.
K has been showing more and more signs that she understands language. Today I asked her if she wanted to "eat" and she made what I call her "sphincter face," where she purses her lips, indicating that she doesn't want any more. That was without any bottle or food or anything around! Just the word "eat!" Very exciting.
Therapy was fun today. Both the OT and the PT were there, laughing and joking, and cheering Keira on (and repeatedly mentioning how unfair it was that Sharyn is in Italy---Mom, you might want to think of them when you do your souvenir shopping!) They tried standing her like this for the first time. K surprised us by supporting herself almost entirely on her feet and her upper arms. She kept pushing her head and shoulders up and had this look on her face like she was so proud being such a big, tall girl. I get teary eyed just seeing her upright like this. I suppose because it's so easy to imagine a real little girl (not that she isn't...please know what I mean) toddling around like toddlers do.
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So, we're doing well. Really we are. Life is busy and there are ups and downs, hills and valleys, with K especially, but I think Jeff and I are both in a good place. There is some sadness that comes with Keira's development, or lack thereof, naturally. But both of us, I think, relish in all the richness that she brings to our lives. I've recently (finally) been reading The Still Point in the Turning World by Emily Rapp. She writes about parenting her son who died young of a horrible disease. I can identify with many of her sentiments:
"The goals for our children are simple and terrible and absolutely grounded in the everyday: dignity and minimal discomfort."
"As tragic as the situation appeared from the outside, the inside of our lives was often blissful, despite the daily very real dread about what was happening."
"One of the hardest parts of living with a disability is dealing with other peoples responses to it."
"I was terrified to be alone with him, afraid of the sadness and helplessness, anger and fear tat touching his head would bring on."
"It's as if there's another baby behind this baby. And we'll never get to meet him."
"He lived, I believe, in a perpetual state of being in the now that people tried to achieve on expensive retreats, chanting and doing yoga and tweaking their nutritional habits. Was he, in this way, more evolved? Did he embody a Tay-Sachs version of Nirvana, a kind of existential bliss, or was this an attempt to sprinkle glitter on a pile of shit or gloss over an absurdly tragic situation? Or could it be both?"
"Having no expectations for his development was both oddly liberating and horrific."
However I find myself quite saddened by her writing, too. Sad for her, not me. She seems, at the heart, hopeless. She's unable to take comfort in the care of others, dismissing its efficacy because others can't understand and are afraid of something like it happening to them. She also seems to be on a never-ending, fruitless search for the meaning of her son's life. She seems unable (I haven't completely finished the book yet) to come to a satisfying resting place about why this happened to her, why it happened to him.
I'm thankful for the assurance I have (Divine, I expect, as it doesn't seem to be something that would come naturally to me) that Keira is enough. Her life has worthwhile regardless of whether she reaches any of the measures of achievement that we hold most of our children to. Part of her story, as Rapp would say, is that K needs the freedom to be a person, to be who she is. And that's all. And in that personhood, which could be seen as so much "less than" my other children, she has so much to give.
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| Those eyes. |
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| With Liam at the "inclusive" playground |
