Albinism, BeYouTiful, Dancing in The Rain, Learning, Motherhood, Uncategorized

The Balancing Act

“It’s not our job to toughen our children up to face a cruel and heartless world. It’s our job to raise children who will make the world a little less cruel and heartless.”– L.R. Knost

How do you balance teaching kindness and generosity while also preparing your children to face the inevitable cruelties they will encounter ? Do you agree with Knost? I do and I don’t. It is our job to do both. Raising children is a delicate balancing act of empowering them to make a difference while also preparing them for the world as it is today.

 

toughmotivation

From the day my little brother was born during the summer of my fifth year I have known my purpose in life was to nurture, protect, and teach. I’ve dedicated my life to educating, protecting and preserving the trusting, curious, and honest nature possessed by children. I have always worked to empower children with the tools they need to make this world
a little less cruel and heartless.  I never dreamed of toughening them up, the very essence of children, what I admire about them is that they are not tough at all. Resilient yes, but not tough.

And then, I became a mom. My destiny was fulfilled in February of 2008 when my first son Stephen was born. About 5 minutes after he was born I realized that  my mommy journey was about to walk a path I hadn’t planned on traveling. It became clear that my son had a genetic condition called albinism.  His younger brother Joseph, armed with the very same genetic condition, would join us a little over two years later. Albinism rendered them legally bind and with sensory processing disorder. 1917685_101389706542427_639419_n
My thought about protecting and preparing our children began to evolve. I spent much time trying to figure out how the hell to toughen up my precious, innocent baby boys. WHY!?  Well, because. Because, sadly, this world is cruel and heartless. This world is sometimes a mean and nasty place. I knew I would continue to fight the good fight and work my tail off to teach them to spread kindness and understanding and dedicate themselves to making the world a better place. However, from the moment Stephen was born I knew time was no longer on my side. He needed to develop a thick skin and I was the one who had to help him develop it.

I had to make a choice for them that didn’t match the footprint of my soul. It wasn’t really a choice at all, that’s just what we do for our children. Their needs become all that matters.

I knew immediately they would be faced with comments, whispers, and questions. I knew because I was experiencing it all as I brought them into the world. The rudeness and audacity of strangers knocked me into a deep depression. I cried from months.

I had to do something to protect them! I felt compelled to desensitize them, to talk to them about all of the names they may be called, teach them how to respond to the questions they may be asked. From the time they were old enough to walk my husband and I forced ourselves not to “rescue” them when things got difficult or frustrating. We knew they would need to be tough and tinatious to overcome the challenges they would face. We knew they would need to learn to fight through pain and suffering if they were going to reach their highest potential. This meant not feeding them when they struggled to see the food or had a hard time manipulating the fork or spoon. This meant watching as they struggled and got frustrated while learning to get their socks on. This also meant letting them fall or walk into things so they could learn how to use orientation and mobility skills to get around independently.

This was an approach we knew they needed. Sticking to it and watching our babies struggle, watching as they developed their toughness, was and still is gut wrenching.

There are certain situations that will always haunt me from time to time…. It is a Tuesday afternoon like any other. I’m still working as an assistant principal in Queens. Madeline, Stephen’s Vision Teacher is here working with him. I’m trying to get dinner ready while she is working with him. Its been a long day. Up at 5:15, opened the school at 6:00, visited three classrooms, covered lunch duty, ran the Pupil Personal Team meeting, fought traffic for almost two hours, picked Stephen up from daycare and raced home to get here in time for Madeline.  She is trying to get him to develop his hand eye coordination and depth perception. She is using a mirror and a small white ball that jingles when you pick it up. The mirror is making it hard for him to determine where the ball is. He is screeching, trying to run away and calling out to me! My inner thoughts began to get the best of me; He is tired. He’s probably starving, its almost 5:30. Maybe I should bring him some applesauce. He doesn’t need to figure this out right now. Why is she being so mean to him!? But in my heart I knew she was not being mean to him. She was working her tail off to help him.

Here in this moment, this is when I forced myself, heart racing, mouth dry, hands shaking, eyes tearing, to walk to the other side of the house, turn my fan on and literally cover my ears.

Fast forward two years….I am a Supercuts with a 4 year old Stephen and a two year old Joseph. Sensory seeking Stephen is bouncing from chair to chair, grabbing scissors, turning on the hair dryers, knocking combs over, making lots of noise, talking non-stop. Sensory defensive Joseph is hysterical, literally clawing at me. He is chocking out his cries gasping for breaths. His sensory system is in overload. Every sense of my being is saying “LEAVE!!! Just pick up and go. This is not necessary. He doesn’t have to go through this.11193225_1072915949389793_6410128911017270901_nI am supposed to protect him. Make his world safe and calm and silly and fun. But I must prepare him to face this world, to understand it is not fair and to help him adjust, even if that means some of his innocence is lost, even though is will harden him a bit.
Tears are streaming down my face, my entire body is shaking as I wrap my arms around my baby and hold him still against his raging body so Corey can cut his hair. Somewhere in the back of mind I recognize and appreciate Bri and Cathy, who are entertaining Stephen and keeping him safe. And so it went for almost 9 months, every two weeks.

In these mommy moments tiny pieces of my heart break off and create tears in my soul. All I want, all I have ever wanted, is to protect him,protect them. I long to keep them from suffering, be sure they are happy. Somehow our reality is such that, in order for them to obtain the independence and freedom they will need to create their own happiness, I must allow them to suffer now. The sooner they adjust, the easier it will be to avoid more suffering in the future. I must witness each struggle, give it the respect it deserves, and then let it go -so they can let it go.

soft and strongI find myself facing a conundrum, how do I teach my boys to make the world a kinder, more gentle place while also preparing them to face its deepest darkest cruelties at such young and tender ages. You know what? I just do. This is a reality all parents have to face. Parents of children with special needs just need to face it
much sooner than others. When children with special needs begin to understand their differences they can begin to face them as well. That is when we can begin to prepare them. My boys understand so I talk to them. I am honest. I arm them with information about albinism and their sensory differences. I educate them about the vast differences we each bring to the table. I read them books like “One” by Kathryn Otoshi and “How Full is Your Bucket?” by Tom Rath.

I teach them about spreading joy by putting pictures in our neighbors mailboxes and sending little packages to our cousins and friends. I encourage them to comfort people when they are sad. I do what we all do, I do my best.

When I get stuck and I am struggling to strike the balance between protecting and preparing my children to make the world a better more kind place, while also making sure they are “hard” enough, I think of lessons I have learned from Piero Ferrucci in his book “The Power of Kindness: The Unexpected Benefits of Leading a Compassionate Life.” He so wisely says,  “Avoiding pain is really the basis for health, reducing it to a minimum is a sign of wisdom. But a certain amount of pain is inevitable in our life. Sooner or later we are all sick, make mistakes, fail, are disappointed in what life brings, or lose a person we love. We all suffer. And we have to come to terms with our suffering.” We should all remember this. Why? So we never give in to that voice of self pity, the voice deep inside that comes forth in our darker moments, the voice that says you are a victim. You are not a victim. We are not victims. We need to remember that pain and suffering is a part of life. We need to honor the role it plays in each and every one of our lives so we do not live in fear of it, to keep it from becoming more than it actually is.

“How do you face pain? It is not easy. The best way to face pain is directly, with sincerity and courage.”-Piero Ferrucci

Sounds so simple, right? Well guess what? IT IS! Once you commit to it, it is. To all the parents out there, take a page from Ferrucci’s book and trust the power of kindness. Be kind to yourself as you navigate the muddy waters of developing balance between self preservation and a sense of empathy and service within your children.

 

 

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