It really is all about the little things.
Our journey has been one of many ups and downs, highs and lows and one of pain, endurance and strength. Patience and sadness handed to us by a diagnosis of disease and heartache. Suffering through the narrow isles of treatment and hope so closely knit together. You cannot have one with out the other. Anger is common and indecent on many occasions. But LOVE provides relief from it sometimes.
It comes in many forms. Some hidden until seen or felt. Like a single ray of sunshine that bursts through the clouds as your are driving to the hospital and you see it and appreciate it for simply what it is. Beauty right there in the sky. Or the snow caught on your tongue melting as you walk in its silence. A poem that touches you the way the poet intended and the words stick with you in remeberence or give you release when necessary. A book to take you away with characters that jump from the pages to your mind and let you live out their fantasies. Or when Adler read his first book to us and we cried! Or to see him overcoming his fears in ways we never imagined. It’s amazing how just a simple zip up of his own coat makes me smile. Or when he jumps up and down going anywhere just because he can!!!! Or how he gets super excited when people come over and anxiously checks the window for their arrival.
I came into the bathroom after watching one of my favorite movies and saw the leftover fun in the tub from last night’s bath. And I smiled and remembered him sitting there playing and laughing and smiling and those are the times that settle those restless thoughts of what ifs and what have beens. His happiness is what drives my everyday. Bathtime is a good time and it may not mean much to some but to me it’s time for just he and I. He wasn’t able to get in and out of the tub for well over a year due to his pain and its debilitating symptoms. Now he can get in and out and he enjoys the comfort of the warmth around his little body. I too have grown to love a good soak!! It’s another little escape for me. Perhpas it is for him too.
Seeing him enjoy any part of his life from walking him into school and singing “Poker Face” down the hall together hand in hand and pointing out the pictures on the hallway walls is a big deal. Seeing him be able to put on his own socks and shoes…..huge deal. Little to some but big to us. And he takes pride in it. IPad and video game time is what he likes so we let him. And toys bring him joy and allow his imagination to flourish so yes, he has A LOT of toys. Action figures to be precise. And no, we are not spoiling him, he is well taken care of. As he should be. He actually just finished opening his Christmas gifts. Not because he had so many but because he takes time to appreciate each and every one.
Seeing him swing and run outside is divine. There was a point in all of this when he couldn’t walk. And now he runs!!! He loves to feel the wind in his hair. Oh that hair too, I love it!!! And I don’t care what he does with it because he has some now!! I cried when it fell out even when he said “don’t cry mommy, it doesn’t hurt me”. So yes, I will take extra time brushing and combing and letting him do his hair in the mornings because it means something to him.
It is the life we live. It is the Adler show. And no, he isn’t a brat or a monster. He is 6 sometimes and he acts like it so my mother role does come out sometimes but that’s all part of it. I didn’t ask for cancer or hydrocephalus or adrenal insufficiency but I did want motherhood. From the moment the stick turned blue to the moment they took him out of me in an emergency. Through teething that sucked and ear infections that made me wonder if he was possessed. To our Mexican stand offs about baths and pajama tops when he fired me!!!!
Somewhere my toddler turned into a little boy and that little boy had opinions but as he has told his friends at school that he has never been in a time out. And that’s true. We talked it out, worked it out, cried it out even but love won in the end. Continuously updating our ways of handling this life we live.
Adapting to our surroundings.
Necessary for survival.
And may love win in the end for ALL of this too. The nightmare of the pain that changed him. The diagnosis and treatment that kept him alive and with us. The hope that burns forever in our hearts and minds against the winds of the unknown future. And may we always see and appreciate the little things.