Sunday, June 7, 2015

Hello Summer

The last couple of weeks have been spent settling into summer.  Structure and routine is an important part of Moise's daily life.  He's a creature of habit and summer throws a curve ball at his usually regimented schedule.  No school means our home is filled with people coming and going in all different directions at all different time, which sets us up for potential disaster where Moise's emotions are concerned.  We strive for some degree of structure and roll with the rest of it, dealing with the not so fun moments as they come, savoring the calm and peaceful moments.

We're getting lots of brother time in.  Kruz is utterly enthralled with his big brother.  He tends to be a bit of nuisance, always up in Moise's business. He takes Moise's glasses and runs with them, swipes his toys and is constantly using Moise or the wheelchair for balance and stabilization.  Moise takes it with the patience of Job, incredibly tolerant of his pesky little brother.

Kruz only recently discovered that Moise's ipad does some pretty cool things.  Moise can't see much on his ipad but he does enjoy the changing lights and sounds of Baby Einstein videos.  There are glimpses, each day, of typical big brother, little brother relationship.  I store these moments in my heart, they get me through the tough times.

Kruz's desire to walk is great.  We're still anxiously awaiting the arrival of his walker, which I am hoping will help him build the confidence he needs to take off on his own.  But for now, he is self appointed transporter of Moise.  He seems to always know exactly where Moise is headed and takes it upon himself to make sure he arrives safe.

 One of our biggest goals for Kruz this summer is self feeding.  He doesn't love to eat, tending to need only to satisfy his hunger and therefore, is not overly motivated to feed himself. After trying and failing with many adaptive spoons that were recommended by his therapists, I finally melted and angled a plain old disposable toddler spoon from Walmart.  It's perfect.  The bowl of the spoon is shallow enough that he can pull the food into his mouth.  The handle is short enough to allow him optimal control. And after boiling it in the microwave, I can manipulate the plastic to exactly the angle that he needs to easily direct it to his mouth.

At first, he refused to even touch the spoon. We overcame that obstacle and now he's getting pretty good at getting the spoon to his mouth but then, as soon as the spoon touches his mouth, he releases it.   It's messy and sloppy and frustrating beyond belief but we'll get there. In the meantime, it's another test of perseverance and determination.

Little brother has discovered that there's a whole big world out there to be explored.  While I work in the garden and flower beds, he finds whatever he can to climb on.

It delights my heart.  It's so beautifully normal for little boys to climb and explore and in a world where so many things are abnormal, normal is not taken for granted.  He hasn't quite mastered getting back down but he's ever so proud of getting up.

He and I spend and extraordinary amount of time in Laynee's garden.   It's the very place that she died, the place where she drew her last breath and said "good bye."  I feel her there. There's peace in this place: new life and growth and beauty.  There's healing for me and lots of learning for Kruz. Someday I'll tell him all about his beautiful older sister while we tend her garden together. I'll tell him of the one who came before him and went before him and left so much love.

Moise's days are filled with lots of time on the swing, one of the few things that blindness has not robbed him of.  We give him a freezer pop and he thinks he has the world by the tail.  A gentle reminder that the simplest things are sometimes the very best things in life.

Saturday we headed out for an impromptu day on the water. Glorious weather demanded a kick off to this year's boating season.  We quickly packed a lunch, making do with whatever could be scrounged up from the pantry and fridge, threw beach towels and sunscreen in a bag and off we went.

There was abundant sunshine and just enough warmth to make it a perfect day for all.  Cool and breezy enough for little boys to sit and enjoy the boat and warm enough for others to enjoy the water.

Boating is a regular part of summer for our family, the watery venue of summer time fun. It's the convergence of family, friends, sunshine, laughter and a lifetime of memories.

Sunday brought summer rains; hard, heavy, torrential rains.  We snuck out in between storms to find that our yard had been transformed into a river, rushing from the field across the road.

I love the hope and wonder that comes with each new season but today my heart is especially grateful for summer.  She wraps her arms around us like a soft warm hug, reminding us that there is always hope and love and life.

Happy Summer.
God is good, all the time.

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