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Showing posts with label Trisomy Family. Show all posts
Showing posts with label Trisomy Family. Show all posts

Wednesday, April 24, 2013

Make Change Through Grace

“God appoints our graces to be nurses to other men's weaknesses.” -Henry Ward Beecher
If we only surround ourselves with like-minded people, we will never change the world. Or, worse yet, we may never change for the better.  Because, let's face it, we can ALL do something to become better people.

When I was pregnant with Rebekah, I stuck with an ob/gyn who was rude to my husband and I and refused to agree to our plan of an emergency c-section should Rebekah have difficulty during delivery. There were many issues, but he even said at one point, "I didn't go through all those years of school and my practice to deal with THIS." ('this' was my baby girl who he expected to die and this situation that he perceived as a hopeless waste of time.) 

Why did we stick with him? For practical reasons, I was close to full term and we didn't have a lot of options. But the real reason is because I knew that, despite his words, he wouldn't have a choice but to help us when it came time for delivery. I also felt in my heart that we just needed to be there and show our faith and strength to him. 

Well Rebekah surprised everyone!  When he came to visit us in the hospital a few days after her birth, he looked at Rebekah and said, "You made the right choice." He also told me that if he had another trisomy 18 pregnancy, he will manage it differently. That made it all worth it!  And it wasn't the point that Rebekah lived, because we were still very much in a questionable place. It was that we celebrated every moment and, despite planning a funeral and dealing with grieving a lost dream of a "normal" daughter, we were hopeful and loving and forgiving and full of grace.

Had we stormed off and changed our plan, or worse yet been ugly and rude, then this doctor's heart would never would have changed.  


Because of his change, I can face disapproving or negative medical staff (or people in general) and give them the benefit of the doubt. Sometimes, I find my view is changed along the way too, and that they really did have my daughter's best interest at heart.

How many people are in the world that have bad attitudes and erroneous views? And maybe all they need is a little grace and forgiveness?  And maybe that grace
can result in a changed heart? And on the flip side, sometimes listening to opinions and views that differ from our can feed our own passions to do good in the world or remind us that maybe we need to change something about ourselves.

This journey is a tough one. We need to be gentle and forgiving to one another. 


“The burden of life is from ourselves, its lightness from the grace of Christ and the love of God.” -William Bernard Ullanthorne (1806-1889)

Thursday, May 3, 2012

Against the Odds - Living with Trisomy 18

Rebekah celebrated her 3rd birthday on April 21, and she celebrated surrounded by her trisomy family! Thanks to Russ Bowen at ABC's WLOS 13 in Asheville, NC, we were able to share the miracle of her life and the blessing that she is to our family.  We are so very grateful to WLOS for running this Special Report on trisomy 18 and sharing our hope and faith with others! Please grab a tissue before watching and SHARE, SHARE, SHARE!! We want people to know that this is a journey worth walking.  (The direct link to the youtube video is here: http://www.youtube.com/watch?v=M5JDrQrwYFY)



The video was taken during the weekend of Rebekah's birthday. We celebrated with 6 trisomy 18  and 1 trisomy 9p friends. We also had the family of a chromosome 2p- (microdeletion), and two families who have lost their trisomy 18 children. Our friends came from SC, FL, and GA.  Below are just a few pictures followed by a link to our facebook birthday bash photo album.

Josiah decided he wants to be a camerman when he grows up!

Beautiful trisomy kids and their mommas

Rebekah showing off her pretty dress and newfound standing skills

Lisa, trisomy mom to Joey, receives a kiss from Kaylen, who has full trisomy 18 and is 11 years old!

There are many more photos to be seen! Please check them out on our birthday facebook album.

Monday, January 30, 2012

Through My Eyes...

Through My Eyes...

If only you could see my little girl through my eyes,
 the way I see her...
She is so beautiful!
She is so happy!
She is so full of unconditional love!
She often looks at the ceiling and her eyes follow things I cannot see.
Then she giggles and darts her eyes in another direction,
as if to see the angels that are hidden from my view.
Her heart is so pure, she knows only love.

Oh, how it breaks my heart to hear the bold, ugly comments about 'her'
and her trisomy brothers and sisters.
"She would be better off dead."
"She doesn't know the difference between her father and the door."
"Kill them all!"
"How can you bring a child into the world knowing they will live a life of pain?"
"She 'suffers' from trisomy 18."
"You must've done something bad to have a child like that."
Oh, the terrible things said about these children from uneducated and heartless minds.

My daughter does not 'suffer' from trisomy 18.
Our world suffers from inhumanity and self-centeredness.
To love my daughter and those like her is to truly know and understand agape love.

SIGH...

"If only you could see the world through my eyes," whispers a voice to me.
"A world were love knows no bounds,
a world where everyone is beautiful,
a world where everyone has a purpose."

Was that her voice speaking to me?
Or that of Jesus, gently nudging me to love and forgive as he has.

I have been given a most precious gift...
the gift of life, the gift of love.
I wish you, too, could experience this.
I wish you could see things through my eyes.