trying to put thoughts into words---what is life like when you have a special needs child?

When you have a special  needs child, life really is a different world. It’s not something most people can understand, not unless you’ve been there yourself. But I guess this is my attempt to put it into words…

I'll start at the beginning, there is always a beginning. the moment you first  learn of your child's disability or illness...maybe it's at birth, maybe before....maybe much later in life. for me it was partway into pregnancy.

In the beginning, you are in denial. You refuse to believe the prognosis the doctors give you. No matter how small or how huge the disability or illness is you don’t believe it. You think

“they MUST be wrong”

You refuse to accept (although mostly subconsciously) that something could be different, something could be “wrong” with your child.

But there comes a day, when you start to realize that it might just be true. Something is different.

That day might hit like a ton of bricks. It might come by something your child does, a noise he or she makes…. or it may come softly, like a whisper in the wind…over time. But it does come. Eventually you face it, you look at it and you begin to accept what the doctors are saying.

It isn’t easy. Once you accept it, or even start to accept it you have to let go. You have to let go of your dreams you had for your child.

Dreams like, maybe he will be a doctor, a lawyer, a dentist

Maybe she will be a dancer, a poet, a nurse

Maybe he will fly a plane, drive a car, own a home

Maybe she will have my grandchildren, live on a farm, have a job

For a time those dreams can haunt you. Knowing they can never be.

But you will dream again.

Your dreams will be smaller.

Maybe he will walk. Maybe she will talk. Maybe one day he will look in my eyes and say “I love you” maybe we can make it a whole week without being at the doctors, maybe a month without being in the hospital….dare I hope for a whole year?

Sometimes those dreams can be freighting. Sometimes you may wonder if your child will live to be grown up. Sometimes your dreams can only see past the next few hours, the next few days, the next month….sometimes you can’t dream at all because it’s to painful.

You will beat yourself up. Wonder if there was something you could have done differently, something you could have changed to have avoided this. Was it that can of pop I drank during pregnancy? Was it this? Was it that? You will drive yourself nearly crazy thinking of what if’s until you realize that there is no way to go back and change it, and most likely it wasn’t your fault at all.

Mourning is a natural part of having a disabled child. You will feel guilty for it. You will feel like your taking something from your child. You know in your heart that you love him or her absolutely and you feel guilty for the pain in your heart.

That’s normal. You will get past it. It may not feel like it then, but you will.

You will have happy days. Some days that feel like everything is going to be OK. Sometimes you will want to go back to denial and refuse to believe that anything is wrong, and other days you will come to accept it without sadness and pain. But there will always be days when you will mourn.  Perhaps when you see another child the same age doing what yours can’t…something will set you back to mourning even for a small time. You’ll shed tears and pick yourself up again.

You will love your child just as much as you would have if he or she were “normal” (you’ll grow to hate the word “normal” as well) you will find ways to make him or her happy, and the smile on your child’s face will light up your life. You will not always mourn. You will have great abundant joy!

You will meet people, because of your child. They will come into your life when you need them the most and they will become as close to you as family. You will learn from them because most of them have a child that is similar to yours. 

You will find a new normal. It may include medical devises, feeding tubes, wheelchairs and hearing aids but you will adapt. You will learn how to take care of your child and you will know him or her better than anyone else can. That bond is strong.

Children with special needs teach us so much. Your child will become your teacher. Your child will teach you joy, compassion, peace, love and so much more than you can imagine. You will see that your child is a special angel sent from God to teach you and those around you.

You will learn how your child communicates. You will learn how he moves, how she needs you to be for her,  you will learn to hold onto each and every day—especially the good days—and live life in the moment you are in because you never know what will happen next, you will learn to truly be thankful for all the things you’ve taken for granted, you will learn so much.

You won’t notice at first how much you’ve changed.  But when you look back you will see that you have grown stronger. You won’t remember when you stopped feeling sad but you will find all the joy in the world in the face of your child.

Someday, you will thank God for your child’s disabilities. Not because of the hardship but because the hardship has changed you. Your child has brought you joy more than you could fathom before and it is then that you realize you would never change a single thing about him or her, you know that your child is exactly who God designed him or her to be.