Sunday, June 21, 2015

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.

Monday, June 15, 2015

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

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.