by Wendell Berry
When despair grows in me
and I wake in the middle of the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water,
and the great heron feeds. I come into the peace of wild things
who do not tax their lives with forethought
or grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.
Monday, June 14, 2010
Monday, June 7, 2010
more...and more...
The last few weeks have been full of MORE diagnoses. On my good days, I can say that diagnoses are not the full story, but lately, truly, I'm a bit overwhelmed.
Moriah is, in her PT's words, a gal with some of the lowest motor skills the PT has ever seen. Ugh. She's not yet sitting up, and sitting up by one year's old MIGHT be a possibility. So we're adding other therapists, to see if this helps Moriah to make more progress. This summer, we'll add 3 additional weekly appointments--baby massage, an OT, and an education specialist. That will be 4 separate appointments weekly.
Also, Moriah continues to ADD specialists to her life. A week and a half ago, I thought we had said good-bye to the first of her specialists--her GI doctor said we didn't need to return anymore. And then (of course) Moriah began spitting up, and so we're probably going to end up back there after all. Just my guess. And...Friday we went to opthamology. Six months ago, Moriah had been seen in Boston for opthamology and they told us to go back in six months to see if she needed glasses (she crosses her eyes and moves them rapidly left to right, which they call "shaking" and some other really big word I can never remember). She doesn't need glasses (yet) or surgery (though it may be a possiblity he said)...what he's most concerned about is this shaking, as it doesn't look like the typical shaking of a kid with DS. Soooo...he's sending us to a neuro-opthamologist (I know, I know, you didn't know there was such a thing, did you?!) because he's concerned the shaking could be neurological. Which means we're back to Boston, sometime this summer, to figure out this eye shaking stuff, and this concerns me, since she's already had neurological issues via her seizure disorder.
In the next 2 weeks, we're also seeing a nutritionist, the cardiologist, the neurologist...
We also had another child's IEP meeting in the last couple weeks, which brought its own overwhelming diagnoses and realizations, though we're pleased at the district's response.
So. So I keep waiting to blog, hoping I'll reach a spiritually profound and encouraging place. That frankly hasn't happened yet, though I do see glimmers now and then as I stick with reading Nouwen's Road to Daybreak, painful as it is to read about a life given to those with handicaps. Mostly, though, we are exhausted here, waiting for summer and time to be together as a family and to re-group (Jason and I are both off this summer). Waiting to hear if Jason's interviews turn into a job closer to home for the fall. Waiting to piece together work for me. Waiting for time together as a couple to organize our kids' lives, including summer school lesson plans for our boys. Waiting for Jesus to show up again, addressing what we most need. Waiting for him to give us MORE--for we are asking again for more peace, more patience, more vision, more love.
Moriah is, in her PT's words, a gal with some of the lowest motor skills the PT has ever seen. Ugh. She's not yet sitting up, and sitting up by one year's old MIGHT be a possibility. So we're adding other therapists, to see if this helps Moriah to make more progress. This summer, we'll add 3 additional weekly appointments--baby massage, an OT, and an education specialist. That will be 4 separate appointments weekly.
Also, Moriah continues to ADD specialists to her life. A week and a half ago, I thought we had said good-bye to the first of her specialists--her GI doctor said we didn't need to return anymore. And then (of course) Moriah began spitting up, and so we're probably going to end up back there after all. Just my guess. And...Friday we went to opthamology. Six months ago, Moriah had been seen in Boston for opthamology and they told us to go back in six months to see if she needed glasses (she crosses her eyes and moves them rapidly left to right, which they call "shaking" and some other really big word I can never remember). She doesn't need glasses (yet) or surgery (though it may be a possiblity he said)...what he's most concerned about is this shaking, as it doesn't look like the typical shaking of a kid with DS. Soooo...he's sending us to a neuro-opthamologist (I know, I know, you didn't know there was such a thing, did you?!) because he's concerned the shaking could be neurological. Which means we're back to Boston, sometime this summer, to figure out this eye shaking stuff, and this concerns me, since she's already had neurological issues via her seizure disorder.
In the next 2 weeks, we're also seeing a nutritionist, the cardiologist, the neurologist...
We also had another child's IEP meeting in the last couple weeks, which brought its own overwhelming diagnoses and realizations, though we're pleased at the district's response.
So. So I keep waiting to blog, hoping I'll reach a spiritually profound and encouraging place. That frankly hasn't happened yet, though I do see glimmers now and then as I stick with reading Nouwen's Road to Daybreak, painful as it is to read about a life given to those with handicaps. Mostly, though, we are exhausted here, waiting for summer and time to be together as a family and to re-group (Jason and I are both off this summer). Waiting to hear if Jason's interviews turn into a job closer to home for the fall. Waiting to piece together work for me. Waiting for time together as a couple to organize our kids' lives, including summer school lesson plans for our boys. Waiting for Jesus to show up again, addressing what we most need. Waiting for him to give us MORE--for we are asking again for more peace, more patience, more vision, more love.
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