MY HEART SPEAKS

Note: In raising a special child, I’ve met some of the most supportive, caring and sensitive people. People who understand what it can be like to face daily challenges. However, every once in a while, I come face to face with the opposite. Recently, I was saddened by a lack of understanding that I experienced. This blog post is my humble attempt to share with you that we all have challenges, and it is our gift to ourselves to make the effort not to judge, but rather to support and listen, even if we can’t truly understand. Each of us is unique and different, and that in and of itself deserves respect. I also want to thank all of you, my precious readers, for your warmth and support, and for allowing me to share the experiences of my life with you. 

Is it possible for one to really portray and express the feelings of one’s heart? Can words really describe those moments of despair, worry, concern, deep love and desperation?

Raising a child with special needs is most often indescribable, for both challenging and blessed reasons. And because it is indescribable, it is easily misunderstood. So what do we do upon hearing and reading someone else’s perception, opinion and experience?

How do we self-soothe, when what is mirrored back to us is nothing but judgment and disdain?

I ask you, dear reader, do you know what it is like inside my thoughts, inside my heart? The longings, yearnings, doubts about the future?

Do you know what it is like to enter the abyss of seizures, medications, therapists, disability rights, medical aid, sleepless nights full of worry and tears?

Can you fathom what it is like to hold your baby as he is put to sleep for surgery? To return to the waiting room with his pajamas gripped tightly in your sweaty palms, for hours that feel like eternity?

Have you ever placed your child on a school bus and dissolved into tears, wondering if he knows where he is going and when he will return?

Would you believe me when I say that on my child’s first day of school, I could do nothing but wait for him to come home?

Have you ever had to advocate for medical aid in the classroom to a school district representative who expressed that she would rather place your child in a wheelchair than have the city pay for an aide?

And have you experienced absolute, intense love when your child gave you a most brilliant smile, when you didn’t know he could?

How about the sheer gratitude and thankfulness to G‑d when you saw your child take his first step, after doctors said he would never walk?

Did you ever look into the eyes of a special needs child and hear him speak volumes, although he was nonverbal and couldn’t “speak” a word?

Have you ever rejoiced in life’s wonderful miracles of being able to swallow, sit up and smile?

How about the remarkable, humbling experience of learning what life is truly about from a child who some would consider useless, slow, incapable and ill-mannered?

Do you know the depth of love a mother has for all things abnormal, atypical and challenging within her life, because of her incomprehensible passion for a soul deemed so special, many fail to see it?

Are any of us immune to having a special needs child or knowing someone who has?

Are any of us immune to challenge, grief, worry, fear, guilt, pain, heartache?

When will we still our judgment and ego and allow our hearts to beat to the rhythm of sensitivity, patience, acceptance and love?

When will we pause for self-reflection and introspection before dissecting the expressions and feelings of another human being?

When will we pay attention, listen and forgive, realizing that we can’t possibly know what it is truly like to be the other?

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4 comments

  1. Dear Chana,
    I do not have a special needs child and I can not fully appreciate your experiences and yet, reading your columns fills me with awe and humility for your patience, vulnerability, wisdom, forthrightness, strength, stamina, and so many other wonderful qualities that shine throughout your writing. You are truly an Eishet Chayil!

  2. Leah greenbaum · · Reply

    Very moving chana. May you continue to have more of the nachas and joy moments.
    Leah

  3. Marcy · · Reply

    As Bubba to a special needs child, I watch my daughter care for him and see so much of what you have written on a daily basis as she and my grandson live with my husband and me. To see the heartache and fear and joy and pride and to experience it myself was described so well by you. Is there a way to message you? Thank you very much

  4. Linda Evans · · Reply

    I needed to read that, my son has PTSD and a Sensory Processing disorder so he looks adorable but acts like a monster in certain situations. I took him out of the public school and am homeschooling him and researching ways to move to an apartment in Seattle where he can go to Hebrew School since we are to far from a local community with good programs. He is doing great with homeschooling but I need more community involvement for us to grow in.

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