Tuesday, March 10, 2015

The Significance of the Signature Smile

I will always remember the first time Max smiled.  He was four months old and I was taking pictures of him and Addie and he started giving us these big grins, complete with dimples and all the adorableness we can imagine.  He actually started really smiling a few days before Addie and he definitely made his reputation in the NICU for being so incredibly smiley.  He smiled at his nurses almost constantly and the smiles brightened the room up.  Those were all days 'before' and his smiles were precious and endearing but they did not yet have the significance and the necessity that they do now.

I say 'before' because being Max's parents did seem to change almost in an instant when we got the diagnosis about his neurological damage when he was 13 months old.  Our expectations and dreams changed dramatically over the months that followed.  Difficult conversations with doctors were frequent and we were constantly hearing about the things Max would not do. We had many dreaded conversations where doctors encouraged us to really think about the concept of quality of life in making our decisions for transplant and long term care.  Some of these conversations were delivered with tact and compassion, others less so.  But the thing that made these talks and the new realities we were facing bearable was his smile.  We did not have to agonize over wondering if Max did have a quality of life because he was pretty much constantly beaming at us.  Al and I quickly realized that although we may sometimes doubt that WE could be happy if we were not able to move or communicate effectively, we never had any reason to doubt for a second that Max was happy.  If you asked anyone caring for Max to describe him in a word, I'm sure most would choose happy.  His smiles were also not random but almost always directly in response to seeing us and they told us that for any of things we were not sure if he understood, it was clear he knew very well how loved he was!

Through all the highs and lows that have followed in the years since, Max's smile has remained extremely important to us.  When he is sick and not feeling well, the smile fades temporarily and that is usually his way of telling us something is wrong.  Then, as soon as he is better, the smile returns and we know he is okay again.  His smile is often more telling than bloodwork or any doctor's assessment.  Frequently we will notice he is not smiling as much but be unsure why and then a day or two later, he spikes a fever or his labs come back bad.  Max does not have words or signs but he has the most expressive face and his smiles and frowns are how he communicates with us and they are how we try and understand what he is feeling in his world.  In that respect, his smile is so much more than just an expression, it is his primary form of communication.

And just as his smile gave us peace during those early conversations and queries about his quality of life, it continues to be our main source of reassurance that for all Max endures that he is ultimately happy and at peace.   There are so many discomforts and limitations that Max endures that we feel powerless to prevent but on a day when his whole body smile is beaming at us, those seem less significant than the things he can do like laugh, enjoy family outings and find joy in his surroundings. If you were to describe Max's limitations and his medical history, it could certainly sound like a very sad situation.  And yet, if you know Max and spend time with him, it seldom feels sad in the moment.  He is charming, personable and his giggling at his mobile is so adorable, it is near impossible not to smile yourself.  I've called Max's smile contagious many times before because being around Max truly is an uplifting experience.  And not just because it will make you appreciate the things you can do (although that too is certainly true) but because he is so happy and his smile is so full of joy that you will end up smiling with him.

The fact that Max's smile is so important to us, to our ability to understand Max and to our sense of peace that there is more good than pain in Max's life is why these past few months when Max's smile had vanished have been so difficult for us. Max was quite happy and smiley through his hospitalizations in December but when he came home in January, we knew something was not right because he was crying a lot and not smiling.  He ended up readmitted a little over a week later, stayed for a little over a week and then came home but still unhappy.  We were worried about him and not surprised when he then ran a fever and was admitted again, and for over a week.  More concerning was that when he came home then, he did not smile once for over three days.  Those were long stressful days.  We couldn't pinpoint what was wrong with him.  No fever, no obvious source of pain.  And yet it was just not like him to not smile and to give us non stop pouting faces and crying.  Finally he began giving some half smiles but for two weeks, the smiles were few and far between and the crying and sad faces were prevalent and really troubling us.

When Max is miserable, we feel very stressed trying to determine what is wrong.  Although he is four, he has no way to tell us or show us more specifically what is wrong.  Although Addie still does not use words to describe what is wrong, she pulls on her ears or touches her throat or finds some way to usually indicate what is bothering her.  With Max, we have this sad pout lip and tears but no real clue as to why.  And when he is sad and his smiles are gone, our hearts are so heavy for Max.  We long to be able to take away his pains and we feel sad that he cannot do the things his sister can that would cheer her up.  His limitations seem bigger, his trials seem less surmountable and our ability not to dwell on the past or fear the future begins to fade.  In a way, his sad faces are as contagious as his smiles.  Without them, the sadness and fears creep back in and his situation starts to feel upsetting and instead of focusing on the great things in his life and that he can do, we find ourselves discouraged and worried.

Thankfully Max's smile free streak has come to an end, for now at least.  He woke up happy on Saturday morning and is back to giving us full whole face light up the room open mouth exuberant smiles.  He is still having some grumpy stretches but we have been able to handle those because a few minutes later we can hear his sweet laughter and see him grinning at us. We know that there are challenges of course for Max, but we know that in spite of them, he is happy.  He sees the joy and he knows he is loved and that there is so much goodness in his life.  When he sees us and flashes us that smile, we remember not the struggles but the sweetness, not the limitations but the love.  His smile heals our hearts and are house becomes lighter and happier. It's pretty remarkable the power this sweet little face has over all of us.

I love to share the pictures of Max's huge smile in hopes that I can share his message with everyone.  Yes there are difficulties and challenges in life, but there is also so much joy and hope.  This weekend we got our happiness back and we are so grateful,  We are soaking up the smiles, focusing on the good and praying that we can keep Max happy and smiling in the days, weeks and months ahead.  Just for fun, some of my favorite pictures of the Signature Max Smile... I bet you cannot look at them and not end up grinning and falling in love with this boy!!

First afternoon home from the NICU and we got a smile bigger than we had ever seen in the hospital! He knew he was home!

Watching him smile while he watches Addie play is one of the sweetest joys to me! 

No doubt he knows how loved he is!
One of my favorite pictures, loving the view from his new chair. 

One of his last really great smiles in late December before he went on his two month smile strike

And our most recent picture of the most beautiful smile in the world that was back this Saturday!!!

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