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.
Oh, mama said there would be days like this. She never told us there would be so many in a row. Hang in there.
ReplyDeleteAs the mother of 17yo daughter with cerebral palsy (affected by CMV), I understand your struggles. But, so glad you are "exercising the different parts of yourself." That is SO important. Know that you are not alone. The road is long and the struggles many. It's a never ending process of coping, but it does get easier. You are already miles ahead having such a positive attitude (although I know it's work, a choice).
Keep moving forward and know that He is with you!