Weary

It’s been harder for me to sit down to write lately. I think I’m tired of hearing my own thoughts and maybe assume that you are tired of reading them. A good friend asked me how I was doing yesterday and I told him that “weary” is the best word that comes to mind. Most days I don’t feel bad. And most days I don’t feel great, either. Overall, Keira is great. She’s generally content and happy and sleeps well and is able to go places with the family. However, our days continue to be (and may always be)punctuated with doctors and therapists who point out what needs to be worked on which, I think, casts a shadow on my overall mood. We’re always striving and always working on the next thing and always aware of what she hasn’t accomplished yet. There seems to be this impossible tension between 1) accepting who Keira is and resting in that and obtaining a sense of normalcy and 2)continually focusing on her deficiencies in effort to help her to grow and be everything she can be. Being with Keira is easy. But thinking about all the other stuff is weighty and can’t be shaken off.

In therapy, refusing to lay on her tummy, she tried to hold herself on all fours!!

I recently heard about a woman whose severely disabled daughter died when she was 14 years old. When she passed away, the woman had no sense of who she was anymore because her whole life had been wrapped up in her. From the beginning, I’ve known that it’s important for me to continue to try to exercise the different parts of myself. However, I find that I’m often thinking about Keira when I’m not with her. I keep coming to work, even though I’m distracted. And this fall, I’ve decided to help out with choreography at our church’s Christmas pageant. I’ve also agreed to teach dance at the studio for one hour a week. I feel so grateful that I am wanted for these endeavors and I cherish the opportunity to continue to have dance in my life. However, I find that weeks before either is to start, I’m anxious and worried about how much time and energy these projects will take from my family and me.

Keira’s tube surgery went fine. However, 4 days later I was struggling to get her to eat. She seemed to regress to a phase she was in months ago. She could not coordinate her “suck, swallow, breath” pattern for eating and when she got too much milk in her mouth, she gagged and aspirated milk and couldn’t cough! She was breathing rapidly and keeping her eyes closed. After 24 hours of this, I was sure I’d be hospitalizing her for dehydration, but we limped through another half day, giving her milk a teaspoon at a time. And then all of a sudden, she was fine. And, her first tooth had emerged from her gums. So, what we figure is that the combination of teething and perhaps surgery had set her back. Scary to think that she could regress so far so quickly, but reassuring that she snapped out of it so readily, too.

Many people were interested in my post a while back about getting appropriate gear and toys for Keira. You’ll be happy to know that since then, we’ve developed a couple of great tools. Her favorite new toy is a rattle constructed of a pill bottle with a couple of paper clips in it. It’s the perfect size for her to maneuver and it holds her thumb out the way it needs to be. Also, my dad put together a pipe/clamp doodad that we can hook onto furniture around where she’s laying and hang toys from it so that she has something close enough to her face to focus on. 

I've felt unable to focus on much of anything, so I've been spending a sickening amount of time on facebook and pinterest. For what it's worth, I came across a verse on pinterest today. Psalm 46.5: God is within her; she will not fail.