"Unlocking The Door To Hope"

 

It has been six years now since my little Sophia went to heaven. Michael describes her life as one of the most beautifully painful experiences one could ever imagine. He is so right. My tiny little Thumbelina baby….All of my life I have been sure of one thing. I would never be able to survive was the loss of a child. Thinking that I was not much good at most things, I was confident that I knew how to Mother a child. Sophie helped me to realize that self-knowledge is relative, but that truth is truth. The latest statistics show that between %80 and %95 of families who have kids with disabilities disintigrate and end in divorce. By the grace of God, my family has beaten all of the odds. Emmi, now 20, is joyfully making her own way into the world. Max, 16, has maintained his natural ability to care for little ones and is hoping to be a gym teacher some day.

Our little Isabella Joy is now 4 years old, and such a blessing to our family. Michael and I have persevered and triumphed over incredible challenges. Life is good. Forever part of my heart, though, is the memory of how incredibly difficult, no, how nearly impossible it was to make it through each day as we cared for Sophia Catherine in our home. Beyond sleep deprived, exhausting all will power and at the very end of ourselves, we were committed to do the same for her that we would for any of our children. It is true that keeping her alive was our choice. We were told just prior to leaving the hospital that we didn’t need to feed her if we didn’t want to, and that we could just overdose her with morphine or leave her there. Other than Dr. Mary, we had no support from the medical community. We strongly believe in the sanctity of life. Our family certainly had no ongoing support from the state agencies which were supposedly in place to help in situations like ours. Hadn’t our society abandoned the notion of institutionalizing children with special needs? Wasn’t the idea to keep children with high needs home rather than place them in hospitals and nursing homes where they are “kept comfortable” as it costs thousands of dollars a day?

Our dear church family came through as they could, and did way more than most. However, you can never take away the daily pain. Day in and day out, the heavy strain parents and siblings must endure when they are faced with what it takes to properly care for a child with many needs. Certainly there was no respite center for Sophia to go to. She was too little, too needy, too frail. We loved her so.

My family became silent sufferers, like many, many other families in WNY. Like others, during her entire life we rarely left the house. This is exactly why so few people know about this heartbreak. And yet it exists here in WNY. Right in our own back yards. And families are waiting….

 

These are a few of my favorite links:

www.seedlingdevelopmental.org	www.emmijames.com
www.huntershope.org	www.parentnetwork.org
www.trisomy18.org	www.bflopnk1.0.com
www.undergroundgarage.com	www.walkintheword.com