Tuesday, April 26, 2011

We Will Never Forget...Cockayne Syndrome

Over the years our family has had the honor of knowing so many precious children with Cockayne who have now gone to their forever home. Today we remember each and every one. Next month, on May 22, it will be six years since our own Emma danced her way into the arms of the Lord.
Do not lose heart....do not feel sad. Do not feel pity...because....
We rejoice knowing we will see her again.
And we know we are blessed to have
Held and Loved
Through her short life she taught us about what is really important in life, unconditional love, looking beyond the surface.
Holding Emma, you could feel the Love of the Lord pouring out of her tiny body.
Yes, we are thankful for sufferings, even for Cockayne.
Therefore we do not lose heart.
Though outwardly we are wasting away,
yet inwardly we are being renewed day by day.
For our light and momentary troubles
are achieving for us an eternal glory
that far outweighs them all.
So we fix our eyes not on what is seen,
but on what is unseen.
For what is seen is temporary,
but what is unseen is eternal.
- 2 Corinthians 4:16-18