"You can Drink the Cup of Sorrow Only If You Drink It in Community." Henri Nouwen.

In recognition of disability month, Evergreen Baptist Church dedicated its sermon time to present a video testimony of a few parents of special needs children who are in the Journey's group. One teenager with autism even got to read a bible verse with his mother in front of the congregation.  The video highlighted the challenges of raising a special needs child and the expectation and hope the parents had that the church body would be a loving and accepting holy ground for their children.  One mother recounted an incident where a few people changed seats in the pew behind her once her intellectually delayed 36 year old daughter started having a "tantrum".  After the video presentation, the pastor interviewed a couple whose 6 year old child has severe seizures leading to his cognitive delays. It was hard to sit through the presentations without tearing up.  They showed pictures of their son as a healthy six month old growing typically like all other children, then having status epilepticus at around the age of one and never having fully controlled the seizures since.  I know all these families and their stories from the Journey's meeting which I attend once a month.  Gabriel and I have been attending the meetings for a little over a year now. We study various books and bible verses that help us deal with our unique lives.  Currently, we are studying the book, Another Kind of Courage- God's Design for Fathers of Families Affected by Disability by Doug Mazza and Steve Bundy.

After the testimony, the founder of Club 21, a support group for families with Down Syndrome shared her own testimony of raising a daughter affected by Down's.  She recounted the loneliness she felt when at a child's birthday party, all the mothers went to grab food and talk while she was stuck in the pool with her daughter who was not yet able to swim.  The loneliness she felt spurred her to start Club 21.  She also said a quote by Henri Nouwen in his book "Can You Drink the Cup?" changed her life to wit:

You can drink the cup of sorrow only if it is drunk in community.

It's true, this journey can not and should not be tread in isolation.  The gift -if you can see a gift in the situation at all- is that fellowship and relationship with people one would never have dreamed come together.  These relationships aren't fake or flaky, they are real and deep.  That's not to say that everyone will get along all the time, I have seen pettiness and the ugly side of negativity that rises out of fear, frustration and anger directed toward  special needs parents from other special needs parents themselves.  I hope to God that doesn't happen among those in the Journeys group.

All the children are so different, just as their diagnoses are all different. I hope the kids don't just get labeled as special needs and assumed to be all the same,  Just as this lady in the clip below says if you've met one child with autism, you have met ONE child with autism, so can you say also that if you've met one Dup15q child, you have met ONE Dup15q child.  Will people take the time to get to know the unique and special beauty of Luki's being?

https://www.youtube.com/watch?v=AmpChommG50

I feel very blessed to be part of a church with such a openness to learn about the struggles of families dealing with disability.  I know I am at that church by a divine calling.  One month prior to Luki's diagnosis, I felt an urge to attend that church without even knowing there was a special needs ministry - a rarity in most church congregations.  The day of attending the newcomer's meet-and-greet with one of the pastors, I was ushered upstairs by a children's ministry director to the Journey's group.  I thank God Gabriel agreed to go with me and not think I was crazy. I am still in awe of how God communicates to a soul.  For me, he placed a desire to check out the church across the street.  He speaks to me through a nudge, an urge, a desire.  I pray I would heed God's promptings more diligently in the future.
Here is a podcast of the sermon.

  http://www.ebcla.org/wp-content/uploads/2015/01/Empathic-Hospitality.mp3

On a more personal note, I have just celebrated 6 years at Kaiser.  The certificate below says 5 but it is actually six this year.  Gabriel treated me out to a fancy steakhouse called The Derby in Arcadia. Amazed how fast 5 years flies by! No job has ever challenged me more. I've shed tears of frustration, anger, sadness but also at the awesome Beauty of the human spirit as it goes through immense pain and suffering. And, despite personality differences among my fellow nurses, I appreciate every nurse I've worked with; after all, if you have administered kayexelate to a constipated homeless man and cleaning him up at 2 am and you're still open for two more possible admissions, you will always have my respect!