The R-Word

6 Mar

“That’s so retarded.”
Do you say it?

“Don’t be a retard.”
Do you say that?

My only child, Sammy, was born with profound mental retardation. Not just your everyday mental retardation, but “profound” mental retardation. Unable to speak, unable to do anything on his own and totally dependent upon the love and care of others. He was my cherished, beloved son, the light of my life.

Sammy came into the world to teach, so if you want to use the “R-word” correctly, I’m happy to share Sammy’s story and teach you about him and other kids born like him. The experience will be “profound”, I promise.

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“Come, follow Me…”

16 Feb

I was recently scanning my laptop looking for old photos, and I came across a few items I had written many years ago.  I thought I’d share something I wrote in 2003 for a young man Steve and I were mentoring at the time.  Looking at the date of when it was written, I estimate that I was around 28 weeks pregnant which means that we had been made aware of Sammy’s HPE for about a month.

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When I was younger, I thought everything was boring, especially if it had anything to do with church or religion.  It has taken me a long time to finally figure it out, but I’ve learned over the years that Jesus is FAR from boring.

After He began His ministry, one of the first things Jesus did was to extend an invitation of a lifetime to four ordinary fishermen (Peter, Andrew, James, and John).  “Come, follow Me,” Jesus said, “and I will make you fishers of men.”  They left behind all they had known and embarked on an amazing adventure with Christ.

Close your eyes and imagine Christ whispering to you, “Hey, follow me, and I will make you . . . ”  Think about what He will make you and what you’d like to be.  Psalm 37:4 says, “Delight yourself in the Lord and He will give you the desires of your heart.”  What does your heart desire?

Jesus’ disciples weren’t just His students, they were His friends, and He loved them deeply.   They went everywhere with Him, and they did so many things together.  They ate together, traveled together, and talked together.  Jesus even gave some of them nicknames just like we do with our closest friends.  He called Peter the “Rock”, and He referred to James and John as “Sons of Thunder.”  They walked everywhere they went, so think about the times when you’ve walked somewhere with your best friends and how you all have laughed and joked with each other.  Don’t you imagine that they shared a few “high fives” after someone had been healed?

After Jesus was crucified and left them, don’t you imagine that each of the disciples must have played back a video in their minds of every moment that they had spent with Jesus?  Peter had walked on water.  They each took a piece of the five loaves and the two fish and wondered how in the world they were going to feed a multitude of people, only to find that there was plenty leftover after everyone was full.  What about the time when they ran out of wine at the wedding, and Jesus turned the water into wine?  How about the blind man who could now see and the crippled man who could now dance and leap for joy?  Each of the disciples was given the power to perform miracles and heal people.  Remember that these were ordinary men who were given an extraordinary power and an extraordinary responsibility.

Life as a disciple wasn’t always easy for them, and it won’t always be easy for us.  There will be risks and challenges that we never anticipated, and there will be times when we will question our abilities.  Sometimes, it seems easier just to stay in the boat and continue our safe, ordinary way, but Jesus wants us to step out of the boat and take a leap of faith with Him.  Are you ready to begin the adventure of a lifetime?  Can you hear Him calling to you, “Come, follow Me . . .”?

The adventure awaits you!

Living Proof

21 Jan

Eight years ago, we had the opportunity to introduce Christian author and speaker Beth Moore to Sammy. I didn’t realize that Beth had shared the encounter in one of her Bible lessons in the days following our meeting. A friend contacted me today to tell me she heard our story told on today’s Living Proof broadcast. Sammy’s ministry and our testimony continues on and I pray that it will touch hearts for Christ.

Saying hi Praying

Blue

24 Nov

After Sammy’s death, we pretty much threw all of his things in plastic storage containers and stacked them in the closets in his bedroom. We just weren’t ready to go through his things, and I certainly didn’t want to give anything away for a while.

I’ve written blog entries about some of the things we have donated or shared with other children with HPE, so I have let go of some things when I knew there was a need by another child.

Five years later, Steve and I are currently in the process of cleaning out those closets and transitioning Sammy’s room into an office where I can do my work for Families for HoPE and hopefully begin working on Sammy’s scrapbook again.

As we empty and clean his room, I can’t help but think about the weekend in 2003 when we painted and prepared the room for Sammy. He was about 6 months old, and we decided that Sammy needed more space and the amenities of the master bedroom would be better for the nurses who worked with him at night while we slept.

With the help of our family, we spent an entire weekend painting and getting the room ready. By Sunday evening, we were able to officially show him his new room.

As I carried him into his room and laid him down in his crib, I was shocked by what I saw. The dark blue walls reflected off of Sammy’s pale white skin and made him look blue! I couldn’t help but laugh at the irony. My baby with a tracheostomy who had a knack for holding his breath was in a blue room that made him look blue! What was I thinking?

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Dandelions from Heaven

11 May

Dandelions from Heaven (Author Unknown)

Mothers Day is coming…and I wanted to send you a sign…
Something you can tell others…”Is from an angel of mine”.
So I searched the Heavens high and low for that perfect thing…
And low and behold I found it….and a smile I hope it will bring.

So when you look to the Heavens and see the yellow stars in the sky.
Just think of me…your angel…in the Heavens way up high…
And just imagine those stars…are dandelions up above…
Yes! Dandelions are also in Heaven, which you know how much I love.

So on this Mothers Day…when you awake and feel blue…
You will notice those yellow stars…are no longer in view…
So just look to the meadows and the dandelions you see…
Are the ones I’ve tossed down this Mothers Day from me!

And when you find a dandelion that has turned from yellow to white…
You’re supposed to make a wish…and then blow with all your might.
For you will be blowing kisses…to me in Heaven above….
And I will be catching them and blowing them back…sent with all my love.

Please know that I am with you…on this Mothers Day…
And also in the days ahead…God and I will never stray…
We will be with you in the morning…when you wake and see the sun…
We will be with you when you say your prayers…when the day is done.

For God and I will never be…very far from your side…
For I can now be everywhere…and God will be your guide…
So…remember when you see dandelions…it’s your guarantee…
That I am always close to you…For dandelions are free to roam…now just like me.

…brought to you by the number 9…

9 Apr

I was talking with some friends recently about how much we all enjoyed watching Sesame Street as children, so in that spirit, I thought I’d share some thoughts on the number 9.

Today is April 9, and in just a few hours, it will be Sammy’s 9th birthday.  Sammy lived 4 years and 9 months, and at some point during the next year, we will reach the day when Sammy will have been gone from us longer than he was here with us.  I know that day is coming, but I try not to think about it too much.  Instead, I choose to celebrate the anniversary of when that little miracle boy totally changed my life nine years ago.

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Go fly a kite…

7 Apr

Sammy’s birthday is only a few days away, and thinking about a great memory we had from 2005, I decided that we would fly a kite at the cemetery.  The wind wasn’t quite strong enough, but we did manage to get some lift and had a nice time.  Maybe we will go back on Tuesday and try again.