Tag Archives: disability

From Desolation to Consolation

Special Needs Parenting, , , , , , , , , , , , ,

 

Bluebonnets by Vikki Yost

The last six months has introduced me to a whole other side of disability ministry. It all began with a phone call my mother received within 15 minutes of my arrival for Christmas vacation.  My son hurried down the hall, “Grandma needs you.”

Hands filled with items from my suitcase, I didn’t bother looking up. “Thanks, let her know I’ll be there in a few minutes.”

“You better go now.  She’s crying.”

Thus began the journey with what we now know to be terminal cancer and my time in desolation. It is all too familiar territory. Diagnosis can be devastating for the caregiver whether for a child or for a parent. There is a relief in knowing what it is, finally, even when the news is not good. And there is grief.  Lots of grief. That process muted my voice to the parents whom I try to support.

Dr. Jack Levinson spoke at a clergy breakfast I attended and offered the keys to unlock where I have been trapped. “When in desolation, remember consolation. When in consolation, remember desolation.” My ministry has been one of remembering desolation and offering hope to parents. A voice of experience saying, “Yes, I have been there too. You are going to be alright. More than alright. You can thrive right where you have planted.”

We all move between the spaces of desolation and consolation. Some call it peaks and valleys. How do we breathe, how do we function, whether in the middle, bottom or top?

The key is faith.  In the story of Job, we see a person caught in extreme desolation. He had lost everything, family, wealth, status, health. Even his friends abandoned him, save for a few. (Sound familiar?) His truest friends came and sat with him in the ashes, for a time in silence, sharing his pain. Once they spoke up they didn’t always have the most helpful things to say, but don’t we all fumble for the right words at times?  Their loyalty was a gift in the hardest of times. Job kept the faith despite his hardships and he came out on the other side stronger for it.

In a way, I think the experience of Job helps explain the bond between parents on the journey with special needs.  Our stories are all different, as unique as our children, yet we know at times a sense of desolation. Loss. Grief. But those are balanced with joy of new-found abilities, hope in a future not yet seen, and the peace that surpasses all understanding even in the midst of chaos. The way in which parents reach out to each other offering support and encouragement to one another pours back and forth that cup of consolation, filling in all of the cracks, mending and making us stronger.

When in desolation, remember consolation.

I received a four word text from a friend. I knew instantly that she, too, was in desolation. I immediately  called and shared a long, heart-felt conversation.  Why? As I read her message I told myself, “Remember consolation.” It turns out consolation makes the desolation not quite as bad.

I waited patiently for the LORD; he inclined to me and heard my cry. He drew me up from the desolate pit, out of the miry bog, and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. (Psalm 40:1-3 NRS)

Consoling God, Like Job, we praise you in good times and in bad, for you are forever faithful. We thank you for those in our lives who remember consolation. Keep us mindful to return the favor. Amen

Rev Doc Lorna

Image “Bluebonnets” courtesy of Vikki Yost

Dr. Jack Levinson is William Joseph Ambrose Power Professor of Biblical Hebrew and Old Testament Interpretation at Perkins School of Theology and author of several books, including his most recent, 40 Days with the Holy Spirit.

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What’s in a Name?

Special Needs Parenting, , , , , , , , ,

When my husband and I were anticipating the birth of our son, one of the most important, exciting and challenging decisions we faced as soon-to-be parents was choosing a name.  Finding just the right name for a person is no small task.  We wanted a name that resonated with our family heritage, one that was easy to recognize and spell, yet not too common. For some reason it was important to me that he not have a name that could not be shortened. I know a Michael or two who do not like being called Mike.  That was a lot to consider. Then family members wanted to jump in with their two cents.  Opinions were not welcome! My feelings were that if they wanted to name a baby, they could go birth one themselves.  Inquiries to know the names that made it to the “short list” were not satisfied either.  We didn’t want our choice slanted by outside influence.  What our child would be called was up to us alone.  Bothered by constant inquiries we finally made up a couple of names.  “If it’s a boy, Rufus. If it’s a girl, Babette.” Those names have stuck with us.  We recently attended a murder mystery dinner theater and needed fake names, so my husband and I were Rufus and Babette for the night.

Finally, after much time and consideration, and the foreknowledge that we were having a boy, we chose the name Craig.  Familiar, but not common. Easy to spell. Cannot be shortened. (Ironically, we lengthen it and call him Craiggers or Craigerkins. Go figure!)  It’s also a name that reflects who he is, celebrating his Scottish heritage.  I had a concern that his name, which means “one who dwells in a crag,” would be bothersome to him. A valid concern from a mom whose name means “one who is lonely.”  No worries there for Craig.  The meaning of his name actually turned into a great bonus from Craig’s perspective since he has a profound love of all things dragon.

Names are important.  What we call ourselves matters. What we are called by others matters.  This week I am at the Summer Institute on Theology and Disability in Dallas.  It is a great blend of theological debate as well as practical application workshops shared by 150 participants from around the world.  People with special needs are one of the most diverse segments of the population.  Typically, when referring to any group of people, you want to use the language with which they refer to themselves.  For some, they prefer the term “disabled,” while others cringed.  “Special needs” resonates with some, while others prefer “special abilities.” One person said she preferred to apply the term “handicapped” to herself. My son refers to what I used to call his “learning differences” as his “learning disability.” For those whose bodies function more typically, I was introduced by Dr. Amos Yong to the concept of being “temporarily able-bodied.” Point well made!  In whatever capacity our bodies are functioning today, there is a good likelihood that given time they will come to function differently. Thinking of myself as temporarily able-bodied offers a new lens that increases my awareness of my own vulnerability.

Hearing the various perspectives around the room, I wonder if a person who experiences a difference in the function of their body puts as much care into how they name that for themselves as Mark and I put into naming our son Craig.  Given the strength of opinions, I will say that many do. It’s a naming that needs to be honored for each individual. There is no “one-size-fits-all.” As a parent I would not accept a name for my child that was imposed by the outside.  Nor did I let my child’s life be defined by the names (labels) that come with the journey of special needs.

Names matter and I apply that in my prayer life praying to Loving God, Gracious God, Healing God, Leading God, Nurturing God, God the Father, God the Son, God the Holy Spirit. In an endless number of names I call on God and trust in God’s attentive presence to my prayers. God is so much more than just one name.  When Moses asked God his name so that he could tell the slaves in Egypt who sent him to free them from captivity, God said to Moses, “I AM WHO I AM.” (Exodus 3:14 NRSV).

God is all things and cannot be defined by one name. In that we are made in the image of God, that is an important facet in the quality of God that is empowering to take on for ourselves and for our children.  We are wonderfully made, even in the midst of our many unique expressions and differences.  We are who we are, transcending the labels with which others may seek to define us.