Raising a beautiful daughter with special needs

Today on Kelly's Korner blog she asked for her readers to show there ministry to others. Even though I would not say mine is an official ministry. I would be honored if my experience in raising Morgan could be an encouragement to others.

There is a little more about Morgan's disablilities in my Welcome to my blog post. That you can search for and read.

I go through a lot of different emotions raising Morgan then I do with my son. Don't get me wrong I want to protect both my kids but with Morgan I feel like I am always on my guard trying to protect her from people who will not understand her.

Every day is a struggle like when well meaning people talk to her at walmart and then when she doesn't respond ask if she is tired or shy.

I admit there are times when I fib and say she is shy. Not because I am ashamed of her in any way but because sometimes it painful or just down right annoying to explain to strangers every single day.

Of course sometimes I do share her story and I have met some awesome people that way.

I would sacrifice every thing for her and in some ways I have. See we used to own this big beautiful old house in PA but the school there labeled Morgan as retarded and she was strapped in a chair most of the day. I could not accept that.


We sold our house and moved to Delaware and live in a house owned by my husbands parents which has brought its own share of drama and diffuculties.
But, we got her into a great school for children like her. She is learning to communicate using PECS. Though I still pray to hear her speak some day.

Sometimes I am fine saying the words like Epilespy and Autism and some days I cry when I have to.

God is my strength and though it took me many years to try and accept the fact that he must truly love me to trust me to raise one of his angels. I think I have.

One of my favorite poems is Welcome to Holland.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Everytime I read it I cry because it is how I feel. Some moms hate it. I think thats because it takes us all different amounts of time to accept things we can not change

I also love this poem:


God Chooses Mom for Disabled Child
Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments forpropagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.
" Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."

Even putting that in my blog now makes me cry.

One of the questions I am often asked normally when I mention Morgan having a seizure or some one sees me taking care of her G-tube is: "how do you handle it?'
Well that is great question.
One I can't answer fully. I guess I handle it because what other choice do I have, and also I am enabled to handle it by the grace of God. See I am a work in progress!

There was a time in my pregnancy when I thought I lost Morgan and then after delivery I nearly lost my own life do to placental issues. But, I did not lose her and I am here hoping to encourage you.

If you are raising a special needs child you are not ALONE. Remember you are going to have days when you think "why me" "what did I do to deserve this".

I know I still have bad days especially when Morgan is around a typical peer her age and I can't even imagine what she would be like if she were typical.

So if I can help you in anyway please contact me. morgan rileys mommy @ yahoo . com (no spaces) or feel free to leave a comment with any questions you may have.