A Note from a Special Kid to Special Parents
By Sally Brown
Raising a child with cerebral palsy is full of mixed emotions. Both
parents and child can at times feel confused, frustrated, joyous and
grateful. This note from a special kid to special parents is intended to
give both sides permission to express all of their emotions and embrace
the life they’ve been given.
You are the perfect parents for me.
I know that you did not sign up for a kid like me. I also know that
you sometimes think you cannot face what it takes to raise me. I want
you to know that this is not true. I believe that I chose you. Whatever
you need to learn, you will learn. The strength you think you need will
come from somewhere. The people you need to meet will show up when you
need them.
This is the perfect life for me.
My life is a very special one. I believe that I will impact the world
in a unique and wonderful way. Remember this when your heart is
breaking because you want a path for me that is so much easier than this
one.
I need you to find your own spiritual path.
The road we are on is not an easy one. To make it successfully, you
will need all the spiritual strength you can muster for the tough days.
You will need to help me when my spiritual strength is out the window.
Often, you will see signs of my determination and be amazed by it. That
is not enough. You will have to find your own answers. I am depending on
you for it.
However you feel about me is OK.
Sometimes you will feel tired and helpless and like you cannot care
for me one more day. Sometimes you will be mad because there seems to be
no escaping me. That is OK. There is no way you could take care of me
without having those days.
Sometimes you may watch people look at me and be a bit embarrassed
that I am not doing better. That does not make you a bad parent. It just
means you are human.
Know that when you have lots of these days in a row, it is time for
you to get somebody else to take care of me, just long enough for you to
regenerate yourself. It is always important that you let people help
you. I am depending on you to do whatever you need to do to take care of
yourself.
However I feel about my disability is OK.
Some days you will be amazed at what a happy contented person I am
and you will wonder how in the world I do it. Treasure those days. Some
days I will be discouraged. Some days I will be mad. Some days I will
even feel really sorry for myself. Don’t panic. I will come back around
again. If you let me express these unattractive feelings, they have much
less power. Even typical folks feel sorry for themselves sometimes.
Let me try things I want to try, even if you are sure I will fail.
I know that you want to protect me. I am your child; that’s your job.
But I need you to understand that my survival is always going to depend
on my determination. Part of my own process is to figure out what my
limitations really are. Sometimes I may want to try to do things that
seem impossible to you. Please encourage me anyway. It is the
willingness to try that is important. Success is a bonus. Know that if I
fail, I will get over it. If you make me scared to try, I am really
doomed.
Don’t worry about my whole life today.
Sometimes you will drive yourself crazy worrying about how my life
will turn out. You will lose hours of sleep trying to figure out how I
will survive in the world after you are gone. This is not helpful to me.
Just help me stay in today. The more you can focus on whatever we have
to face today, the more you will be helping me develop the skills I will
need when it is time for me to get along without you.
Sometimes people will be mean to me or scared of me. I expect you to stick up
for me, but I do not expect you to change the world.
There are lots of really wonderful people in the world. You and I
will meet many of them. There are also some real jerks who will be
afraid of me or not treat me fairly. They will assume things about me
that are not true. They may even assume things about you that are not
true. You may want to start a fight. I may want to do the same. I expect
you to speak up for me when you can. But I also need for you to be able
to let it go. It will not help me if you are mad and defensive all the
time. If you are, there are people who may not want to help me just
because it is too hard for them to deal with you.
Finding good doctors and professionals is important, but you know me better
than they do.
I expect you to trust your own instincts about what is good for me.
The doctors and therapists that work with me are going to be very
important in the quality of my life. Some of them will be amazing and
some of them will be pretty crazy. Often, it will be up to you to decide
which is which. Listen to them and know that what they say is
important, but also remember that you know me best. If something they
suggest does not feel right to you, listen to that small voice and speak
up.
I really hope we can laugh.
I believe that laughing was probably God’s best idea. It will be the
one thing that can bring joy to our lives the quickest. If I get stuck
in a mud puddle, it is probably funny. If you are lifting me and we both
fall on the floor in a heap, that is probably funny too. A good joke is
worth taking the time to laugh at. Help me not get so caught up in the
serious problems we face every day that we forget to laugh.
About the Author
Sally Brown is a business owner and author with cerebral palsy. She
owns Creative Crutches, a supplier for Bfunkymobility, LLC. Brown has
been a story teller and comedian. With love and humor she shares the
truth about her life as a person with a disability.
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