I'm sitting in the dark in Keira's nursery, on alert to record any unusual "events," while Keira sleeps with a ponytail of electrical wires. She's doing a 24 hr EEG, another test to rule out seizures. I guess her previous sleep study and subsequent EEG showed enough not-quite-normal activity to warrant another beautiful headdress. I think she looks like the girl with the pearl earring. The nurse added the green headband and red "rose," just cause she's cute.
I've wanted to write a dozen times since my last entry, but it felt like too much work. Lots of things are too much work. Forget dishes and laundry, I don't even bother squishing the little spider on the wall in the entry and my parents didn't get so much as a card from me on their respective holidays.
Sigh. Jeff and I have been in unusual form lately. Typically, when one of us is down the other has some stamina left and vice versa. This last week or two, we've both been out of it. As we ascertained, there's not really anything particularly unusual going on. And we aren't really sad. Or angry. It's just that our reserves have been completely depleted. Each day, all we have to go on is our rest from the night before. So we try to just cut life down to the essentials, but even then we feel completely spent by 3 pm and still have to figure how to get everybody through to bedtime.
So, where are we?
Keira endured 7 weeks in her cast, which made going back to her hip brace seem like getting into your old favorite sweatpants. Last week, she was finally cleared to return to the swimming pool. She still has to wear her brace when she's not in the water, but this seems do-able. The surgery seems to have had good results but there are no guarantees that the results are permanent...
...speaking of which...
There is always something. K has undone her fundoplication from last summer. Retching and vomit have become a daily occurrence again. We want to avoid surgery, so we've worked with a dietitian to make our own baby food at home, a solution that has helped omit some kids' reflux. We handmade all of her food for a few weeks and it actually seemed counterproductive. So, now we are back to her old food, feeding her by tube 8 times per day and eliminating the pump feeding at night. It's tedious and maybe not realistic in the long term, but seems to be helping with the vomiting.
We are, by necessity, already looking ahead to Keira's 3rd birthday. This means graduating from the Infant Toddler Program, saying goodbye to some or all of her current therapists, and possibly starting school (going on the bus and everything) with the school district's early childhood program. K stole the show at her first IEP meeting, but I was very stressed for a while, worrying about what programs/therapies to get going for her in the fall. It's a big transition, yes, but when it eventually occurred to me that no decision is going to make the difference between whether or not she ultimately walks/talks/etc. (sad, but true), I was relieved.
Recently, after writing 2 letters of complaint to different businesses within a week, I realized that I was becoming that dreaded "special needs mom" that I never wanted to be. I was feeling so tired and overwhelmed, that It was leaking out all over. More specifically, I was feeling entitled to being treated well/having good service. Like, "Do you see what I do every day? You should roll out the red carpet for me!" Or, "How dare you make me deal with this when I have more important things to do!" This disgusts me about myself. Because I think it's who we are in the little things that really shows our character. Well, at least I caught myself. But I'm not the only one. One of my boys asserted one night over dinner, "You are pretty much grumpy all the time."
This, of all things, broke my heart and shattered any illusions I had that I'm good at putting on a positive face in front of the boys. And that's probably for the best. Because clearly a lot of the stress I feel is due to the expectations that I put on myself, something that was a part of me long before Keira. For example, I pretty much try and parent the boys as if they do not have a profoundly disabled sister. Not that we hide her from them or anything. It's just that I try to give them all of the individual opportunities, time, and attention, regardless of how much Keira requires. Again. Not very realistic. I'm learning.
Do not get me wrong. Though more often than we'd like, Jeff and I feel like the phrase "hanging in there" is all-too-accurate a description of our state of being, there is joy. There is pride and huge smiles and lumps in our throats and tears when we see Keira engaging more and more fully, in her own way. Some of my recent favorites:
Liam feeding Keira cotton candy.
Keira choosing her preference of pudding over applesauce by looking at the pudding, even though it was on her non-dominant left side.
One of Keira's workers recently gave her a Jamberry manicure. This has been so fun. K seems to love the attention both during the manicure and later, when people compliment her nails.
If she were any other kid, she wouldn't have gotten away with this, but I was so tickled. K refused to open her eyes for the eye doctor to examine her, but when he gave up and sat back to talk to me, she opened her eyes, smiled wide, and raised her hand for "more!"
Fluidly moving her head back and forth to track people walking around the room or to make sure everyone is watching when she does something she's proud of.
Sitting in church with all 3 kids recently. The boys wanted to take turns holding her and K couldn't have been happier. She kept cooing aloud even during the sermon, but I couldn't shush her.
Thanks for reading, Friends.
