summer update

Hello friends!

It's been awhile since I've written with my own voice; poetry seems much more able to reach and reveal what I cannot these days. Again I find myself writing a blog post without intent, focus, revelation, or inspiration. These things just are not coming in these last weeks, which have been full instead of the struggle to accept-but-not-stay-with: worry, stress, anger, exhaustion, and depression. How do we honor the limitations in ourselves, while believing that God can strengthen us to greater things? How do we accept grace for who we are today, ugly as it may be, while choosing a new attitude or a better mindset? How do we both trust God, and express our anger toward him, all at once? I find myself these last weeks wrestling with these tensions, sometimes too frequently driven to nap, other times completely energized and running down our town's streets for miles.

We have, however, made it to summer. The last few weeks of our school season were a sprint to the finish line; perhaps this explains why I am crashing so frequently these days, exhausted from the race. But summer is here. The busyness of the last months is behind us. We are all home for the summer and choosing to take back the time, and our lives, even though we really could use the extra money that working part-time jobs might afford us (if we had the energy to look for them, which we don't). The boys and Jason are building a tree house in earnest; the floor is framed and has its joists, the floor boards coming soon. Last night Jason and I snuck out of our basement room in the dark and hung out in our hammock, watching fireflies and marvelling at the moon. I want a summer filled with these kinds of being-present moments, and I hope we can make them, and appreciate them when they happen. Last summer passed in such painful grief and acute stress that I am looking forward to a summer of slowness, and, if I can remember to choose it, gratitude.

Orilus left for two weeks of summer camp today. We're grateful for this opportunity for him, which was partly provided by some people we don't know who donated some money and made it possible for him to go. In two weeks, Jason and I will get away to our favorite Vermont inn...another freebie for which we are grateful. In August, our church will help our family to go to a family retreat for families with special needs kids. After the year we've had, we are so appreciative for these reprieves and these generous acts of family-care. We have been--and are--needy this year, and we are humbled by that, and humbled by people's offers to help.

The summer, as many of you know from my Facebook posts, has not gotten off to an ideal start. Moriah has been quite sick. Our week, already booked with 5 appointments for her, filled to overflowing with daily visits to the pediatrician, a hospital X-ray, an ER visit at night. Now the major appointments for next week are rescheduled for later in the summer. Good, and not-so-good, to still have them looming, to have them take up days in a July and August we had hoped would be less medicalized, and more free.

We both keep telling ourselves that this is just the "new normal." Somedays, I get that, I really do, and it doesn't phase me much. Other days, I'd like to trade with somebody else for their "normal," especially when I hear of people's plans to take normal-people summer vacations, to lie on the beach for days at a time, to have a whole week without a single appointment. But then I think of the one episode of "Wife Swap" I watched in a very weak moment, and I think, swapping is not so good after all, comparison being the root of all kind of discontent, a truth to which I can painfully attest.

I have some writing projects to work on, some syllabi to create for the fall, a lot of reading to do. The boys have summer school--Orilus at school, Jackson at home with us. Kobe needs to learn to fetch a ball when we throw it, an admirable goal for a retriever, for goodness sake. Moriah is nearly sitting on her own now, and wanting to pull herself up to standing, though she doesn't yet know how. We need to work out more, all of us, and use our Y membership and its pool, and enjoy the fact that we are home. And mostly, we all need an attitude adjustment. We have been crabby in the last days, probably the fatigue and stress of making-the-year-happen catching up with us all.

So here at the Winchell house, we're asking for light this summer. For bright light that casts out shadows, and for burdens that feel lighter than they may actually be. We'll take light in whatever form it can come. Sitting on the hammock last night, I got to thinking how dark the world can seem, until you sit for a while, and your eyes adjust, and you notice moonlight, and fireflies glowing. There is light to be had, if we can slow down enough, sit long enough, breathe quietly enough, to see.

Begin

Begin again to the summoning birds
to the sight of light at the window,
begin to the roar of morning traffic
all along Pembroke Road.

Every beginning is a promise
born in light and dying in dark
determination and exaltation of springtime
flowering the way to work.
Begin to the pageant of queuing girls
the arrogant loneliness of swans in the canal
bridges linking the past and future
old friends passing though with us still.

Begin to the loneliness that cannot end
since it perhaps is what makes us begin,
begin to wonder at unknown faces
at crying birds in the sudden rain
at branches stark in the willing sunlight
at seagulls foraging for bread
at couples sharing a sunny secret
alone together while making good.

Though we live in a world that dreams of ending
that always seems about to give in
something that will not acknowledge conclusion
insists that we forever begin.

~ Brendan Kennelly ~

The Peace of Wild Things

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.

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.