There has never been a great story written without a hero. Whether they reached the damsel in distress or they pulled a kitty from a burning building. There was always a hero that melts your heart, for some reason or another.
Well my hero is my son. He’s 7 years old, is as sweet as honey, but has the heart of a lion. Baffling I know but by the end he may be yours too.
I’ve never openly discussed this before, not because I’m ashamed or scared but because I just never felt the need I converse about God’s plan for my son. So here goes……
My son was diagnosed at age 1 with a rare bone disease that causes the growth of bony tumors to grow in places that they don’t necessarily belong. While your bones are growing his cells don’t go on the inside as they should they flow outside and that’s what causes these growths. It is called multiple hereditary extosis aka MHE. Note the word hereditary, he is the only one in my family with this, he’s a spontaneous case, but his children and his children’s children will have it or shall I say could have this disease.
When I first discovered this he was 1 years old and seemed to have a crooked leg or bowed leg but the other one is straight so I took him to his pediatrician. They did an x-Ray and told me that he had osteochondromas (bony tumors, growths) and they handed me a printout from google. Thanks for that overflow of information, lord knows I don’t know how to use google. Smh. So we got an appointment with an orthopedic doctor that wasn’t helpful at all, in fact she didn’t even make eye contact when she said
oh it’s normal for some people, bring him back when he’s 11 for a hip to toe scan
. Well since then my son has had 3 surgeries and it’s only been a 5 year treatment period. What if I hadn’t gotten a second opinion? What if I hadn’t used my gut instinct and searched for answers and treatment? What if I had just given up? I don’t even want to place my mind in that space, but I know that things would’ve been much worse for him than what they are. Never let anyone leave you clueless when concerns the life of your child, especially when you know something is off. We are their advocates and protection. Fight for them. I will. I have. I am. Until the end.
Through all of this my son has always kept his feelings quiet. He doesn’t complain. He doesn’t appear mad. He isn’t sad. He’s a otherwise healthy and happy little boy who is loving, kind, generous, and intelligent. There’s one that I left out that he expresses with a depth that I have never witnessed before: selfless.
He shares his toys and anything else that he has with you. He apologizes when he’s wrong and will even cry if he thinks that he’s hurt your feelings, but there’s one thing that he has told me that he wishes for;
no one else to have what I have because I don’t want them to go through this, especially my little sister, I don’t want her to have 1 surgery, let alone more, like me
I fought back tears and sat in silence while I tried to wrap my brain around the concept that my 7 year old son cares more about others than hisself and is willing to withstand the pain and surgeries as long as his sister doesn’t have to. My Lord where did you create this soul that I have been blessed with to raise and call my own? What a graceful person to be around. What a peaceful soul to be loved by. I can’t imagine my life without him. When I’m feeling inadequate as a mother without a word he hugs me and kisses me on the cheek and says
it will be okay mommy
. How did he know? I have no clue. I look at those big brown eyes and I feel the power of kindness, love, and giving.
I wake up everyday and wonder what will he encounter today, where will his next new growth be? Will he walk differently? Will he be able to use both of him arms and hands? Will he be okay as he goes to school and is around
kids? Does he feel normal? Is he ever sad? Does he have low self esteem? These are issues that I worry about on a daily basis. Being bullied is the tip of the iceberg for me in concern. I have to make sure that this little boy that will one day be a grown man is of sound mind, body, and spirit so
that he can’t be broken. By no one. No teachers, kids, adults, family, friends, or girls. This is what matters.
When he was 2 1/2 I was giving him a bath and he asked me
why his older sister isn’t like him
and I ask him
what do you mean, like you
and he said
you know like me, not normal, with extra bones and pain
With glassy eyes and a large lump in my throat I managed a raspy
God made you unlike anyone else because you’re special and you are far from normal, you’re perfect and don’t ever question that. I love you.
He gave me a big hug and a kiss and ran out to go play with his toys. I sat in the bathroom and weeped quietly in the acceptance of how strong he truly was and the day he became my hero.
He will always be my one and only hero.