As I sit here quietly.... questioning my role,
as mother to my special son with vibrance in his soul.
I wonder with great heartache why there’s so much pain
Both mentally, and physically our lives are not the same.
We live a life of chaos, no two days alike
One day feels like championship- another like 3 strikes.
My special little man you see is recognizing the stares
Of people that are curious of the burden that he bares.
He isn’t like you and me, new challenges every day.
He puts on his happy face and longs to grow and play.
His body is his prison, its strained to grow and thrive,
But much like other children, his spirit is alive.
He also starts to question, why his body is so strained
why he can not go to school- as though he lives in chains.
He is too aware you see, his mind so brilliant and bright
Emotions stir inside him, he grows tired of the fight.
So yes there may be days of rest, but also days of strength
He wants to be a “normal” kid- he explains this at great length.
His journey’s been a bumpy road with pit stops here and there
His goal in life is just to grow up, knowing we’ll be there.
Not just by his side as parents- but as his playmates too.
He talks of hosting a party one day with laughing, music and food.
He says there will be pizza there -served with a side of ranch
Song lists of his favorite music- to teach us how to dance.
He dreams of growing up one day and having children of his own
A wife, and a car, a good career a place that he calls home.
He says he’ll be our neighbor and never move too far
as though he knows deep down inside his spirit is in charge.
I share this dream of his you see, for him to grow and change
for healing and great memories replacing those of pain.
To hear my little boy say such things like “don’t tell me it’s just a poke; I know what IV’s feel like” my heart swells in my throat.
I wish for all those moments to be replaced with memories full of joy.
I literally would do anything to protect my little boy.
Every day is a new challenge- for all of us in his life
Living moment to moment to moment -taking one day at a time.
We continue to pray for healing, strength and happy days
but lately I’ve been wondering is he already healed by God,- just in a different way?
Maybe a way we do not see, but exactly the way God planned. Not the type of healing, recognized by man.
Maybe my son’s a messenger of hope, encouragement for those-
that need to feel unconditional love. It’s the only love he knows.
Perhaps my little boy’s meant to teach, and humble the lost souls
To introduce our Father God, to help reset priorities and goals.
I must remember all of these things to help pull me out of bed
mornings after sleepless nights and prepare for the day ahead.
I need to take the time each day to put myself in his shoes.
The shoes of proverbial miles walked in a life he didn’t choose.
My children continue to teach me about what matters and the choices that I make- After all they would simply say “YOLO” and forgive my countless mistakes. They sacrifice so much you see to watch their brother live, never really knowing what tomorrow has to give.
So as I sit here quietly, I focus on the smiles
the miracle of my family and life in the eyes of a child.
Kaden just celebrated his 7th birthday. We can't hardly believe 7 years have already passed since we were introduced to our little man. Kaden had a wonderful little party and enjoyed his special day. He enjoyed some time with a couple of friends and opened gifts with a smile on his face. It was nice. He is still battling many things and we're doing our best to manage his health care right now. There really isn't any new information other than his blood looks better. His meds are constantly changing and we are still trying to figure out what we're dealing with. This disease rears it's ugly head unexpectedly but Kaden keeps on trucking! We are still trying to help him gain weight, and find the right cocktail for him to thrive. He is sick right now with a very wet cough and isn't feeling well. Please keep him in your thoughts and prayers.
Love to all, Julie
