Read an Excerpt
Letters to My Special-Needs Child
By Brenda M. Batts
iUniverse, Inc.Copyright © 2009 Brenda M. Batts, M.Ed.
All right reserved.
Chapter OneA rollercoaster ride
If there was ever a moment of total transformation, it was the moment you were diagnosed. In that instant, I embarked on the most amazing journey of my life. I stepped through an unfamiliar door and onto a rollercoaster ride filled with fear, fun, and unexpected turns. Our journey has been, and continues to be, quite a ride.
There are times when I'm ready to get off the rollercoaster; the uncertainty of your future terrifies me, but then, right around the corner comes hope, and at the end of the ride, I'm eager to start all over again. One lesson that I have learned by being the parent of a child with special needs is that I do not have to like whatever journey I'm on, but I do have to embrace it, because in doing so, it will bring to light blessings and experiences never before imagined. Thanks to you, my little one, I embrace, I love, and I welcome the next twist and turn of our rollercoaster ride.
The purpose of life
The purpose of life is a life of purpose. I read this quote as I was driving home from work today. It always amazes me how a word, a small event, a seemingly unimportant phrase posted on a gas station marquee can have the power to change the minds and hearts of people. Change can only occur when weare ready to listen, ready to keep our eyes open, ready to act-and finally, ready to recognize the blessings that being the parent of a special-needs child brings. Today was yet another day of blessings for me, another day of learning what your disability truly means. The purpose of life is a life of purpose. How accurate this quote is. How precisely this simple sentence describes the essence of who you are and what you represent.
I have always known that the purpose of your life is to teach others that you are so much more than your disability. Your purpose in life is to enable others to peak into an unspoiled spirit, a spirit whose soul speaks of God's perfect creation. It all makes sense now. Finally, it is clear that your disability enables others to reach into the depths of their being and experience, through you, the simple pleasure of a sunset, the beauty of a rainy day, and the majesty of each season. If your purpose in life is to enlighten others, then your life of purpose has achieved the very end for which you were created.
What a day this was: funny, busy, and silly-the story of my life. As I walked into the living room, I realized that you had fallen asleep on the couch. You looked so angelic, even holding that powdered-sugar doughnut. You had an expression on your face that told me, That doughnut sure was yummy! I took the half-eaten doughnut from your hand and put you in bed without brushing your teeth!
It had been a full day for me, as most of my days are. I went to bed feeling guilty for not having brushed your teeth. It is funny how God has a way of teaching us to appreciate both the small and big things that we experience in our lives. That night, I decided to get in bed accompanied by a dozen doughnuts. I wanted to see what the appeal was for you. I ate the entire dozen, every single one of them, and for once I did not worry about the thousands of calories lurking inside of me. I ate all the doughnuts, and I enjoyed every bite, every calorie. The sugar rush I got was like an out-of-body experience! Tomorrow, those calories will begin to make their presence known, but tonight-just for tonight-I have been given the privilege to peek into your world and enjoy the simple things in life. Today, if even for a small moment, I have experienced the wonder of being you. Thanks for teaching me that the small things in life can bring us the greatest pleasure. And to think that it all started with one powdered-sugar doughnut.
A glimpse of God
You walked into one of the classrooms in your school, turned on the CD player, and began to dance to the YMCA song. This is a daily ritual for you, one that brings you sheer joy and jubilation, one that helps you to transition into your day with ease.
This morning was different ... very different. As you were singing and going through the song's motions, your teacher turned to me and said, "I love to see your son doing that. As he sings and dances, when you look at his face you can see a glimpse of God." You can see a glimpse of God. Wow, what a statement: You can see a glimpse of God. I looked at your beautiful face, and noticed that your eyes were slightly closed, as if you had made a heavenly connection, as if you had been transported to a place where there are no questions, no doubts, no fears. I looked at your beautiful face and indeed, I saw a glimpse of God! I saw love, acceptance, purity, and peace that surpasses all understanding. At that moment, I just closed my eyes and thanked God for His amazing gift, for allowing people to see a glimpse of Him through you.
You are a special child
I remember the day I found out you were a child with special needs. Confusion, fear, and sorrow took over my whole being. After the diagnosis, people kept telling me, "He is special." My thought in response to that statement was always And?
The years since our diagnosis have only confirmed and given credence to those words. You are indeed special in many ways. I now agree with everyone. You are special because you have:
S-Sensitivity, which is rarely found these days.
P-Perseverance beyond belief.
E-Energy that most people would envy.
BLDBLD-Compassion that surpasses all understanding.
I-Ingenuity that teaches others, in silent ways, the meaning of love.
A- Ability to live, to love, and to learn that most of us take for granted.
L-Love and unconditional acceptance toward others.
Are you special? You bet you are. Thank God you are!
I work so hard
I work very hard. It seems as though I work too hard. The funny thing about it is that I complain about all the work I do on any given day, but is anyone listening?
Today, I observed you very carefully. It is truly remarkable the way you struggle to communicate, to get the words out, and to be understood. If that were me, I would probably give up. You on the other hand, you keep on trying ... you work very hard!
I saw the tremendous effort it takes for you to focus, and the demands imposed upon you to do so. If that were me, I would probably daydream all day long; it is easier and more fun than work. You on the other hand, you keep on trying ... you work very hard!
I noticed your perseverance as you struggled to hold a pencil just to write a simple word that probably has no meaning or relevance to you. Me, I just use the computer; it is so much easier. You on the other hand, you keep on trying ... you work very hard!
Next time I want to fall into the I work so hard phase, I must remember how you go about your many activities with a smile on your face and a song in your heart. I will remember how hard you work to turn your so-called mistakes into learning opportunities for you, as well as for others around you. I will tackle my so-called work with the same kind of care, perseverance, energy, and pride with which you tackle yours.
My dearest child, I work ... I work so well! I work so well, and I do it with honor, because this is what you have taught me to do.
I am sad
I am sad. I am very sad. Today, the awful uncertainty of what will happen to you in the future crept into my mind-as it does most every day. Where will you end up? Who is going to tell others of the wonder of you? Who is going to love you, protect you, and take care of you?
I am very sad. But then, a glimmer of light sparked into my mind and soul. You came into the kitchen, and I saw you popping popcorn in the microwave, opening a can of soda, and searching in the refrigerator until you found what you wanted.
Where will you end up? You will end up being independent and enjoying life to the fullest.
Who is going to take care of you? The many people that the goodness of your spirit has touched will be there for you. You have refused to be ignored all these years and will continue to do so.
What will happen to you? You will fight as hard as you have so far to be understood, and above all, you will succeed. You will continue to be the wonderful, loving child that you are; you will continue to make your presence known. Who is going to tell others of the wonder of you? You will. Along and through the years, you have been the only one strong and knowledgeable enough to let people know about the wonder of you.
Today, I am very ... happy. Today, I am very happy! I can rest assured that no matter where you are in time and space, you will always be the only one who will be able to show the world who you really are. Thanks, my sweet boy; thanks for today's peace of mind.
A day off
I am taking a day off. I am taking a day off from the challenges of being a parent. For the first time in a long time, I will love myself-love handles and all. Knowing how important I am to those around me, especially to you, I will care for myself. I will appreciate my imperfections, laugh about my mistakes, and marvel about my strength.
Today, I am taking a day off. I am taking a day off to appreciate who and what I am. Today, I will focus on regenerating my spirit and refueling my emotional tank to give you only the best of me. I will take the day off because I deserve it. I will make a list of all my qualities, forgetting all my faults. I will do my nails, do my hair, and eat chocolate all at the same time. I will appreciate myself, because when it is all said and done, I make a difference in other people's lives.
Today, I will take a day off knowing that this is exactly what you want me to do. You said so today when you came up to me and caressed my face ever so gently with your hands full of sand. You said so when you planted a wet kiss on my face, leaving residue of potato chips on my cheeks. This was your way of telling me, Mommy, today you will take a day off, because you deserve it. Today, I am taking a day off, and it feels great!
Have I ever?
Have I ever told you how proud I am to be your parent?
Yes you have, when you cheer for the things I do, however big or small.
Have I ever told you that you are the perfect child for me?
Yes you have, when you hug me and hold me, when you believe in Me.
Have I ever told you how important you are to me?
Yes you have, when you work so hard to help me be the best that I can be.
Have I ever told you that you are my heart?
Yes you have, when you give your best to me, whether we are together or apart.
Have I ever told you that being your parent is the greatest gift God has ever entrusted me with?
Yes you have, when I see your eyes filled with love, thankfulness, and dreams for me.
Have I ever told you ...?
Yes, Mommy, you have. You have told me of the love, hopes, and dreams you have for me. You have told me in the way you hold me and always take care of me. You have told me that forever you will be there for me, and I know you will. But most importantly, you have told me that in every step I take in life-no matter where you are on earth or heaven above-you will walk ahead of me to pave the way to the achievements of our dreams. And when I look at you each day, I know that you have told me all the things you want to say.
I'm a very lucky and privileged person; I truly am. There must be something uniquely special about me, for God to have entrusted me with one of His precious angels. He has sent me you, to show you this world and through you, to make a positive impact on others.
God must know something about me that I have yet to learn about myself. Whatever that is, I wake up every morning with renewed hope, eagerness, and enthusiasm, ready to take on the opportunity to nurture and develop the very special gift that God has given me in the form of you.
A super parent
T his day was nothing short of amazing. Have you ever wondered what compels people to say some things? Have you ever noticed how often people have what they think are inspirational words for parents of children with special needs-not realizing that inspiration is part of our existence? Have you ever noticed how deep in thought people seem to be before they approach us on the street? I have noticed all these things. And although it might not seem like I appreciate them, I really do. These encounters give me the opportunity to share you with the world.
The couple seated at the table next to us looked like they couldn't wait to finish their meal to tell me something. Perhaps their intense interest in you was because they noticed your unique mannerisms: your obvious insistence on singing the same song repeatedly, your unique ways of reacting to environments that overstimulate you. Whatever it was, I felt for them, because in their rush to eat, it seemed unlikely that they were enjoying each other's company, much less their delicious dinner. I turned to them and smiled and continued to wonder. After a few minutes, the couple got up from their table without ordering dessert!
The couple finally came over to our table, and with a somewhat apologetic look of concern, the woman leaned close to me and whispered, "You have a special child. God bless you, how do you do it? You have earned your place in heaven; you must be a saint." The questions kept coming so rapidly that I didn't know which one to answer first. I took a deep breath, looked at your beautiful face, held your hand to gather strength, and said, "Please sit with us for a moment; there is something I would like to share with you. Being this child's parent has been my utmost honor and privilege. I do have a special child, in more ways than others can appreciate. God has already blessed me and continues to bless me to the fullest. I have earned my place in heaven-you are right-not because I am the parent of a child with special needs, but because I treasure and appreciate a gift that came from God. I think I have earned my place in heaven because I am a good person: I respect and appreciate others, and I always try to give the best of myself to everyone I come in contact with, knowing that my interactions with others might impact their lives, knowing that each encounter leaves an important imprint on others. I want you to know that I appreciate your kindness toward me, and I will leave this place knowing that others care. Thanks for being so kind. As for being a saint, well ... the jury is still out on that one!"
Today I am sad, but tomorrow will be a better day.
Today I am frustrated, but tomorrow will be a better day.
Today I am afraid, but tomorrow will be a better day.
Today I am tired, but tomorrow will be a better day.
Today I am indifferent to other people's needs, but tomorrow will be a better day.
Today I am numb, but tomorrow will be a better day.
Today I am ... Today I am blessed!
Today I will count the blessings received and the blessings to come. Today is already a better day because of you, and tomorrow will be an even better day, because tomorrow holds endless possibilities and opportunities for you to get one step closer to independence!
Today I am blessed because you are in my life, and I can hardly wait until tomorrow!
The reality is that our life is different; please pinch me to awaken me from this reality.
Pinch me when I feel pain deep down inside my heart; I need to find a way to escape this feeling once and for all.
Pinch me when I cry so that I can stop, and then pinch me when I'm angry; I need to work this out.
Excerpted from Letters to My Special-Needs Child by Brenda M. Batts Copyright © 2009 by Brenda M. Batts, M.Ed.. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.