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.

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.

Kruz News: Three Years Old

Kruz turned three last week.  Birthdays are a joyous time of looking back to where we've been, how we've grown and changed and how far we've come.
There will always be a little piece of my heart that regrets that I wasn't there when Kruz (or Moise or Jalayne) drew his first life sustaining breath outside the womb.  I wish that my mind held the sweet memory of the first gaze into the eyes of  long awaited love. 
I can't begin to say what occupied my day on June 16, 2012.  What I do know is that my mind was ignorant of the fact that my fourth son had made his way into the world.   Although I don't know all the details surrounding his birth, I suspect that day's ambiance wasn't merry and celebratory, as we tend to imagine when a child is born.  Born with a perforated bowel, two major heart defects and facial deformities, joy likely turned quickly to concern as the reality that something's "not quite right"  became obvious. Kruz was whisked away to Children's Hospital of Illinois and there he stayed for nearly five months.

I wish I had been there for those months, that he hadn't been alone in that hospital bed.  I wish that I had memories of long nights of rocking and snuggling and sweet baby breath.  If I'd known, I would have been there. From that first day; the day I changed him, with trembling hands, into his "going home" outfit and placed him into the car seat that we'd bought on a  whirlwind stock-the-house-with-baby-stuff shopping spree, I loved this child with every beat of my heart.  I think there has always been a place for him in my heart, a place that sat empty and waiting, a place that could only be filled by this one precious boy.

In spite of those missing months, we couldn't possibly cherish our beautiful boy any more than we already do. I cannot imagine life without his sweet innocence and the joy that he brings to our lives.

Things have not been easy for Kruz. He has and will continue to face many challenges.  But he's learning new things every day. His personality is beginning to shine-- happy and funny and so full of love.

He's had his walker for just over a week and already he has become more adept at maneuvering it.

 His current favorite past time is playing with his own image.  He looks for himself in mirrors, windows, the fireplace door, the wash machine, and anything else that might him a glimpse at the cute little guy that looks back at him. He stands at the freezer door and dances and prances on his toes so much that I'm starting to see ballet in his future.

He melts my heart.  Every single day this child melts my heart.

Throughout the day I felt twinges of pain in my heart.  The knowledge that we were not blessed with the honor of celebrating 3 with Laynee was never far from me.  But that awareness made this birthday that much sweeter.

We celebrated in quiet, family style.  The way he likes it.  They way we all like it.  Right here at home with the people who love him most.  I made spaghetti, his favorite, and he ate it big kid style.  In other words, it wasn't pureed, a monumental feeding milestone.  Sometimes it takes my breath away when I watch him eat, he's come so far in such a short time.

He tasted his cake but wasn't too keen on it.

No worries, Moise ate enough for both of them.

He was showered with "noisy" toys.  Because right now it's what motivates him best.  He is beginning to grasp cause and effect.  If I push this button it's going to play music and light up.  We're taking his cues and gently nudging him in that direction.  Learn baby learn. Push that button. Flip that switch. Turn that wheel.  Watch what happens and then do it again.  He's learning how to play because, for some, playing does not come natural.

But of all his toys, with all their bells and whistles and flashing lights, the thing he likes best, the thing he always comes back to is his books.  A new book from Grandma Kathy makes him ever so happy.  Keep reading Kruzer.  You'll learn so many things that way.

I can't believe how far he's come.  He is such a bright spot in our lives.  He has done more for this family than we will ever hope to do for him.  He's brought healing and joy and love, so very much love.  My love for this child is so great that it hurts at times.  

Kruz Kadarm Dowah Holmes, my big 3 year old......."You're BEST."

God is good, all the time.

When the Carnival Comes to Town

Most things in life are a mixture of pros and cons, happy and sad, rain and sunshine, good and bad.  As humans, we tend to notice the bad more than the good.  We rarely miss the rain but many days the sunshine goes unnoticed.  But sometimes there are moments that feel like perfection, moments where you wish you could bottle all of the sunshiny happy and make it last forever.

This weekend we had a perfect moment with Moise.  It was a an hour of so much happy that my heart could barely contain it all.

It was the weekend that the carnival came to town, the annual Tremont Turkey Festival.  For most, the Turkey Festival is one of those good and bad events.

It's so bad! It's almost unfailingly hot, humid and sticky.  There are some years, like this year, where the rains come, turning an entire section of town into a muddy, sloppy mess.   For those of us who volunteer, it sucks up an entire weekend's time and energy. There are usually at least one pair of shoes that will never be the same after the festival. The smell of smoked turkey, corn dogs and funnel cake adheres itself to clothes, hair and nasal passages. In so many ways, it's truly miserable.

But it's so good! It's great food and fun, laughter and meeting up with friends.  Most of all, it's a perfect display of community, as hundreds of people from our little town come together in volunteer effort to benefit our town. We feed and entertain thousands over the course of three days with 34,000 pounds of turkey.  Truly remarkable.

Moise adores the Turkey Festival. Jim, forgetting about the festival, had originally scheduled a Thursday evening business meeting with one of our perspective homeowners.  He had bid on a new home and this meeting would hopefully seal the deal.  When he remembered it was opening night of the festival he called to reschedule saying, "it's the best night of the year for my son and I can't miss it."

Moise's glee was so great, when he learned he was going on the carnival rides, that he could hardly stay in his wheelchair.

There are no words to describe the feeling that fills my heart when something so simple makes him so unbelievably happy.  Moments like this make me so grateful that Jim and I get to be his parents.  There is no question that life would be simpler if Moise didn't face so many challenges, but I think that if that were the case, the perfect moments would often go unnoticed.

Patience is not one of Moise's greatest virtues but he waited so patiently to ride the rides, clinging to his Dad's hand.  He knew that his Dad would tackle the strenuous feat of getting him on the rides. 

 He's got a special dad and he knows it.  What he doesn't know is just how hard it is for Dad to get him on those rides.

Moise is fearless on the rides.  Neither Jim nor I will get on them but we have great friends who are always willing to ride with Moise.  His pleasure is obvious as we watch from the sidelines.  I can only imagine the sense of freedom he feels as he flies through the air.  This one night of every year, he doesn't need to see or hear or walk to feel the rush of pleasure that the rides bring. For this one night, I believe that being Moise is far greater than being a typical 14 year old. 

After putting him on the last ride of the evening Jim leaned close and told me "This is his last year of rides.  I won't be able to get him on next year."  The words were only confirmation, I could clearly see the struggle each time Jim carried him to the rides.  At 112 pounds, Moise's body is large and heavy, his palsied legs cumbersome and awkward.  He grows bigger by the day, it seems.  Next year the effort involved in bringing him so much joy will be physically and logistically impossible.  I pushed the painfully obvious truth aside.  We'll deal with next year when next year comes.  I etched a picture of this, his greatest joy into the pages of my mind. I never want to forget this perfect moment in my little boys' life.  

Kruz was rather apathetic about riding the merry go round.  He didn't resist it, but neither was he elated by it.

He was perfectly content watching and carefully taking in the carnival atmosphere around him. Perhaps his own love for rides will come in time but if not we'll find whatever it is that brings him greatest joy.  For now, I (his mommy) am his greatest joy.  He and I have our own perfect moment every night as we read stories and sing songs together before bed.  I'm soaking up every single one of those moments for I am keenly aware that nothing so perfect lasts forever. 

Kruz wanted nothing to do with the sugary puff of cotton candy. On the other hand Moise, after testing it a few times with the tip of his tongue, dove right into it.

Life is filled with joy and sorrow. The more life I live the more I realize that the most perfect moments require the presence of both, the good and the bad times.   

We wouldn't  appreciate the sunshine as much if we never had rain.

God is good, all the time

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.