Tag Archives: friendship

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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Cords That Cannot Be Broken

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

 Strand by TCJ2020 from FreeDigitalPhotos.net

“I tried to connect with another parent raising a child with special needs, but she compared her child to mine. She said I can’t understand what she goes through. My situation isn’t as challenging as hers because my child ‘just has …’.”

Q&A time after a presentation is always interesting, but this recent statement… Wow!  I spoke at a Mother’s retreat and this mom’s comment caught me by surprise in some ways, but also resonated in others.

I’ve led support groups for years and find parents connect on a variety of levels.  Though their journeys and diagnoses of special needs may be very different, parents have a variety of common experiences: grief and guilt, anxiety about the future, coping with school plans, and more. As parents bond and connect, they can see past the differences in diagnoses to their shared challenges in parenting.   Time and again I’ve heard parents marvel at how connected they feel despite the fact that the diagnosis within their families are so varied.

Yet I have also heard comments like the one the mom shared at the retreat.  My son is on the autism spectrum and when he was entering high school another parent of a child with autism told me that I didn’t know what it was like for her because my son was older then and didn’t have the same expression of autism as hers. True, on some levels. Though my son was not born “older,” one can never know the exact experience of another person.    There is a saying, “If you’ve met one person with autism, you have met one person with autism.” It is a spectrum with a variety of expressions as unique and individual as fingerprints.  But it doesn’t mean that the differences in the expression of that spectrum renders parents incapable of hearing each other’s stories and helping each other in the midst of hard times. If we limit ourselves to only connecting with parents on exactly the same path as our own, it is going to be a very small circle of understanding and support.

It is possible to care and connect even if our life circumstances are different.  We do that all of the time.  Recently we’ve experienced torrential rain in my hometown.  I’ve received phone calls, text messages, and social media connections from across the country from friends checking in to see if my family is okay.  I suppose I could respond by saying, “If you’ve not had multiple inches of rain in a short period of time day after day you can be no help to me.” The truth is that you don’t have to experience a flood of epic proportion in your home town to be able to understand that it is frightening, creating rising anxiety to match the rising waters.

Genuine empathy and compassion are not necessarily born of having lived the exact circumstance, rather they are born of caring and friendship. One of the healthiest things parents can do for themselves is to connect with others in mutually supportive relationships.  In the book of Ecclesiastes, the author writes poignantly of the importance of relationships.

And though one might prevail against another, two will withstand one.  A threefold cord is not quickly broken. Ecclesiastes 4:12 NRSV

Sure, we can stand against adversity and challenges on our own, but it is so much easier to share the journey. Community and support are a gift, even when they come from unexpected places.

Holy God, bind us together, Lord, bind us together with cords that cannot be broken. Bind us together, Lord, bind us together with love. Amen

Rev Doc Lorna

Prayer by Bob Gillman

Image “Strand” by TCJ2020 from FreeDigitalPhotos.net

Six Things Special Needs Parents Wish You Knew

Special Needs Parenting, , , , ,

Pencil with Cheklist by cuteimage

“So I say to you, Ask, and it will be given you; search, and you will find; knock, and the door will be opened for you. 10 For everyone who asks receives, and everyone who searches finds, and for everyone who knocks, the door will be opened. (Luke 11:9-10 NRS)

While the special needs world can feel isolating, many times there are people in our lives who want to reach out in a meaningful way but are unsure what to do. At times concerns about causing offense or being intrusive create barriers to understanding.  Bridging the communication gap with special needs families can open the door to supportive resources that improve family and personal resilience. Jesus teaching to ask, seek and knock ring true. Here are a few suggestions that may help improve understanding of the world of a special needs parent:

  1. We can use help from time to time, but may feel uncomfortable asking for it. It doesn’t have to be something big. Even a small gesture like picking up a prescription at the store or meeting a child as they get off the bus can be a big help. If a family has a child with fragile health or impaired mobility, having a list of folks to call on can be a life saver.
  2. We need friends. Special needs parenting can be isolating due to differences. We appreciate it when people make the effort to reach out. It is hard for us to do so because we often receive rejection.
  3. We like to be included. At times our families have a hard time being part of activities due to physical, intellectual or behavioral differences. We may be hesitant to try new things. It’s nice to be invited and then welcomed if we feel brave enough to try something new.
  4. We need to talk. An important part of coping well with stress is being able to share with others. It helps process feelings. It is validating to be heard.
  5. Our “normal” family day may look different than that of other families, but it is neither tragic nor heroic. It is simply different.
  6. We don’t mind answering questions. A great way to build bridges is simply to understand the differences with which we live. Approach the discussion from a positive perspective rather than, “What’s wrong with…?” Perhaps try, “Since your son is non-verbal please teach me how to communicate with him,” or “I would like to have your daughter over for a play day and I understand she sometimes has seizures. Can you teach me what to do if that happens at my home?”

 

Gracious God, help us share our story in a way that others can hear and understand. Amen.

Photo: “Pencil with Checklist” Image courtesy of cuteimage at FreeDigitalPhotos.net