The conference is healed every 2 years and it is for the benefit of our kids with PMS (Phelan McDermid Syndrome).
At the conference we learned that there are only 4 families (out of 500+ PMS cases) that found out in Utero (while pregnant) that we had a baby with a rare genetic disorder. Rhonda and I were one of those 4 families.
If you have heard my story before you would know that all along the way we were counseled by a lot of people that we may want to consider "terminating" the pregnancy. As a matter of fact the stats for people that receive the type of news we did abort... at a 97% rate! WOW!!!
Of course and obviously we said, "no".
I have thought about this over the years. How many of us would knowingly walk into this sort of life?
How many of us would knowingly walk onto a path that is so hard and so stretching and so crazy and say, "YES"?
We did.
This is not to pat us on the back and say, "We are the parents and Christians of the year," It is a mere reflection of how much of a blessing this little girl has been to us. I also reflect on the countless numbers of "genetic mistakes" that have been aborted and wonder if the parents have any faint clue of what they have missed out on. Sure its hard, sure its a challenge. But God hasn't called us and put us on this planet to work hard, go save money and retire comfortably. We are here to reveal His glory, and I cannot think of a better way for Him to reveal His glory that through a handicapped child.
In John 9:3 we have the story of a blind man where Jesus was asked by His disciples, "Who sinned this man or his parents to make him this way (blind)?" First note the complete weird and false concept of who God is (see Cause and Effect blog)... Jesus' response is awesome! He says, "no one sinned! it is so that the works of God can be displayed..."
We may say, "Well... Gods works ARE healing and taking away infirmity." And I would say that that is one of a million of God's works. What if one of God's works was working in me though the circumstance of my handicapped child? What if the works of God include Amiah (my daughter) defying all of what has been said of her int he past 3 1/2 years? It is so much more than we often think.
Sometimes life's greatest blessings come though taking the hard path and the hard way. It is a rare man who will do this. One who will knowingly heap upon himself suffering and hardship. But I know one who did it for us. And we ought to do the same for Him.
This is what I would say to some that were counseling us to abort. I would tell them, "You do not understand my worldview. My worldview and paradigm that I live life though is, at the core, rooted in a being that has sacrificed Himself for us. That CHOSE to lose His life that I may have it abundantly. And now, on a smaller scale I get to imitate that being. I GET TO sacrifice my life and lay down my rights so that I may serve another.
WOW!!!!
Thank you Jesus for the opportunity to share in your suffering (even though it is small in comparison) I will do it for you and Amiah.
Now I can see that she was never a choice, she is a blessing.
Hope this helps,
Ezra
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