Wednesday, July 29, 2015

Summer Days

Every season is my favorite season.  When it first arrives (the first snowfall, the first hint of orange in the tree tops, the first robin or the first smell of fresh cut grass) I know, without a doubt that this is my favorite, until the next first sign of season arrives. There's always something, the next new favorite, to look forward to. But right now, we're soaking up summer and enjoying it immensely.

The first part of summer was consumed with preparing a small house in town for Grant to move into.  It left precious little time for much else but we did manage to squeeze in a camping trip and a couple of days on the lake. As the older kids move on with their own lives, doing grown up things, we find that our family excursions are starting to consist of Jim and I, Kruz, and Brock and friends. There is an ever present awareness that soon Brock will also be off doing grown up things.   Until then, we're enjoying the calm, laid back camaraderie of not quite adult boys.

Climbing continues to be little brother's favorite past time.  Even when we go camping, he finds something to climb on.  His world is so big and full of exploring.  I treasure the opportunity to see the world through his little boy eyes.

He wins hearts wherever he goes.  He's so quiet, so joyful, so full of peace.

On weekdays, everyone is off to work and my days are filled up with little boys. We do typical and some not so typical boy things. Our mornings start off lazy. Moise's current cocktail of medications has him sleeping much later than usual and Kruz has always been a great sleeper.  As long as there's not an appointment to rush off to, brothers sleep late and mom enjoys the quietness.

Moise is teaching me braille and it's truly amazing that something so simple as dots, when put together in proper configuration, can open up a whole world of communication.  And blindness, frustrating as it may be, has renewed my never-under-estimate-him motto. He amazes me with the things he can learn.

Play dough is a new favorite past time. Kruz still shudders a bit at the feel of it in his hands but he tolerates it better each time we bring it out. Moise has many uses for the stuff.  He smashes and rolls and cuts it.  We also cut out shapes for math.

Wet has been the central theme of this summer.  It rains often and when it's not raining, the extra moisture in the area causes the humidity to be stifling.  But we get out as often as we can, in the mornings or evenings when it's more bearable.  We swing.  We swing a lot.  Moise on his swing, Kruz in his swing or both of them together in the hammock. 

After years of dormancy, Kruz has happily put the swing set back in motion.

Kruz's walking with his walker is coming along.  He hasn't mastered maneuvering around objects and often finds himself stuck in tight places but we're getting there and I'm hoping he'll soon be independent in it.

Moise's two primary sources of exercise are swimming and riding his bike.  We try to get at least one, preferably both, of them in every day.  There are times when having two non ambulatory boys requires some creativity.  Sometimes I just have to laugh in wonder at the fact that this is my life, so dramatically different from anything I could ever, in a million years, have dreamed up.  

Laynee's garden becomes fuller and more beautiful every year.  There's an ache deep inside of me every time I look at it.  It's such a beautiful reminder of the child who enriched our life so much.  It reminds me every single day of the growth that has taken place in my own heart since we said "good bye" to her.  In spite of the pain, God has been so incredibly good to us.  

Aside from playing with little boys this summer, I admit that I'm not accomplishing much else.  I am a perfectionist by nature and there are eleventy hundred jobs and projects that jump out at me every day, things that nature and instinct tell me I "should" be doing.  I was raised with with the words "don't put off for tomorrow what you can do today" ingrained in my brain.  And, while, I think there is much wisdom in those words, I have also learned that "if it can wait til tomorrow, I won't regret playing with my children instead."  Children grow up quickly and sometimes tomorrow doesn't come. And if tomorrow doesn't come I'd rather say "I played with him on that last day" than "I cleaned my garage that last day."

 "Today why don't you love a little deeper,
 laugh a little harder, 
hold the ones you love a little tighter
Because tomorrow is never promised."

So much love to all of you.
God is good, all the time.

Monday, July 13, 2015

The Sound of His Voice

The mountain is voiceless and imperturbable: and it's
very loftiness and serenity sometimes makes us the more lonely
--Henry Van Dyke
For the first time in many years, Moise is not attending camp this summer. Since he was about 7 or 8 years old, he has gone to camp for children with disabilities. The camp is wonderful, run by caring staff members and filled with activities and outings. The activities are, naturally, geared toward seeing and hearing children.  I knew that, without his vision, the majority of his time at camp would be spent sitting in his wheelchair-- not watching, not participating, just being--while the other children took part in the activities.  He would be bored and boredom results in extremely negative and aggressive behavior in Moise.  Camp days are long days, with him leaving at 8am and not returning 'til 4:30pm.  In all the years of going to camp, I've never been convinced that he loves it.  Each morning when I put him on the bus I felt a twinge of regret as he seemed so resigned to his fate of every day camp.  Then, each afternoon when I picked him up, I felt the twinge again, as he came off the bus looking utterly spent and unhappy. Over the years I developed a love/hate for his summer camp.

There were many variables that factored into our decision to forego camp this season, not the least of which was the fact that I am no longer working outside the home.  When I was employed, it was simple.  I had to go to work. Moise needs constant care. Therefore Moise had to go to camp.  But my being home, coupled with some extreme behaviors last spring and a newly hired caregiver to help out a few hours a week, led to the decision to allow him to spend his summer at home.

The best thing about no camp?  We spend a lot more time together.

The worst thing about no camp?  We spend a lot more time together.

It's a strange dichotomy.  On one hand, it's life sustaining love, peace and perspective. On the other,  life sucking weariness and exhaustion.  Somewhere in the midst of it all, there's a delicate balance that I struggle, daily, to find.

Much of my summer has been spent entertaining, teaching, challenging him. Through it all, I talk to him, because, as parents, talking to our children is what we do.  I instruct him, praise him, correct him, comfort him and sometimes reprimand him.  And lately, perhaps because he and Kruz are the only ones at home with me all day,  I find myself longing for him to answer me.  I long to hear the sound of his voice.    Recently it has struck me that I don't even know what his voice sounds like.

All day long, I listen to him.  I'm conditioned, to the point of hypervigilance, to every sound he makes.  He has his own sort of octave that ranges from deep guttural moans to repetitive "uh uh uh uh uh" to high pitched squeals, but never words.  I know what every sound means.  I know, by his sounds, when he is happy, sad, angry or excited, but I don't know the sound of his voice.  I don't know his words.  I don't know what produces all of his emotions.

I know there are words in there, locked up inside of him, and so often I wonder, what would he say if he could use his voice? Would he tell me that he hated camp, that he never really wanted to go there? That he's glad he gets to stay home with me?  Would he say that Kruz drives him crazy with his constant glasses snatching, ipad stealing attention? Would he tell me that his hip hurts much more often than I will ever know?  Would he say "You know that yogurt you give me every single night with my meds? Well,  I've always hated yogurt!!" Would he say that he thinks life is bitterly unfair?  Or would he say "it's okay, Mom.  I'm tough, I can handle it and God is good."

So many times I sit and watch his face and wonder at the mix of emotions and expressions that I see there.  I wish that he could tell me what it is that brings a smile to his face at times for no apparent reason.  And when he laughs hysterically, until drool runs from his mouth and he can't catch his breath?  I want to know what's so darn funny.  I could help him so much better if he could tell me what hurts when his features twist into a grimace.  Life would be so much easier if he could articulate what's going on inside of him when his jaw tightens and his fists clench in rage.  And when the tears of sorrow start to fall?  How I wish that I could hold him as he pours out his heart...all the hurt and frustrations of his life.

There are big changes on the horizon for Moise and they make my heart ache.  Big changes are hard for anyone.  I think about when my older kids transitioned to college or new jobs.  They come home and tell me all about their new adventure, the good and the not so good.  It was so difficult to send my daughters off to college, but I always knew that I could talk to them any time I needed to.  They could tell me all the things they loved and hated about their new life.  Many times I heard "Mom, I want to come home."  So many times I just needed to know that they were okay and I would know. By the sound of their voice, I would know.  As Moise gets older and moves onto whatever comes next in the world of disabilities, how will I know that he's okay?  How will I know if he's terrified?  How will I know if he loves it or hates it?  How will I know if, God forbid, someone hurts him?  He can't say "Mom, I want to come home."

If only I knew the sound of his voice!

God is good all the time.