Wednesday, March 17, 2010

I did not cry....

For the first time ever when looking at the papers from when we bought and had to sell our house in PA. I never thought I would get to that point, But I have.
I have a peace I have not felt before. I now know that is getting another house is not in our hands but God's and looks like our prayers are going to be answered soon.
I am so thankful.

Tuesday, March 2, 2010

My little boy is officially a little man LOL

So my little man does not want to use baby wash or even kids body wash any longer. He now wants to use Axe like his daddy. The funny thing is that he even picked out a bottle he wanted all by himself the other day at Walmart. Its called shock and he told me while I gave him the bath today that it makes him smell good.

They grow up too fast...................


Friday, February 19, 2010

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.

Monday, February 8, 2010

Not Me Monday!



Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I did not go along my husband and son on Friday to Sams club at the crack of dawn to buy a big screen tv. Nor did we eat doritos for breakfast on the way home. I mean come on who does that?

We also did not go out twice after the big blizzard and discover the roads were horrible only to keep going and discover Walmart was closed.

So what did you NOT do this week?

Tuesday, December 22, 2009

The Great Christmas Gift Exchange

I haven't blogged in forever. What a bad blogger I am. But, what better way to get back into it, then posting about the kids performing in our church Christmas play. They were two of the cutest bells I have ever seen. Not that I am biased or anything. The name of the play was the title of this post. The Great Christmas Gift Exchange. Evan did not even want to participate at first but when he got up on stage it all changed. He is quite the performer.
I am especially proud of Morgan. During practice all she wanted to do was lay on the stage and look at the pretty lights but when it came time to perform she participated fully and really shined.
Evan Being Silly Before the play

Love his cheesy Expression

He really is a cutie pie.


Look how pretty she is sporting her new hair cut

Go Evan Go!

Words can't express how proud of her I was

He loved being up there. I see Hollywood in his future.

Evan Taking a Bow.







Monday, July 27, 2009

Praying for Baby Stellan

God has really laid on my heart to pray for this precious little boy Stellan. I have been reading his mom's blog for a very long time and have fell in love with this sweet baby who was born with a very serious heart condition. I often participate in his moms NOT ME MONDAY posts but thought it best not to do that today and just ask every one to please pray as his condition is very bad and deteriorating quickly. To read updates head on over to www.mycharmingkids.net
We are dealing with our own illness with Morgan right now so this is short but I wanted to get it on here.

Tuesday, July 21, 2009

an anniversary of sorts

I wish so badly that I had a picture on this computer of this anniversary I am referring to but I do not since its a brand new computer. Hopefully though I can dig one up and get it on here soon but I did not want this day to go by without mentioning that today marks the 7th anniversary of Morgan becoming a NICU graduate and finally getting to join us at home.
I remember how happy and terrified I was at the same time that she was coming home. She had to come home on a heart/apnea monitor and she remained hooked up to that for 7 long months.
Our journey has been so hard and little did we know that what we thought was the end of her struggles by being released from the NICU was really just the beginning. I love you Baby girl!