Christmas Music to a Special Needs Parent’s Ears

Philippians 2:4
Do not merely look out for your own personal interests, but also for the interests of others.

“How are you really doing?”

Oh, how I love to be asked that question, in that way!

On a regular basis, I hear words of longing expressed by parents caring for children with special needs. There is an aching to have their bittersweet situation acknowledged. They need to be overtly asked. And they need to know the person asking really does want to know the answer — that they’re not simply throwing out a casual greeting or just trying to be polite.

For me it’s like a warm hug to be asked for a personal update, and about my family’s wellbeing. To be honest, people didn’t ask very often before Covid-19. In the midst of these prolonged weeks and months of pandemic isolation (and lack of hugs), they ask even less. Yet Covid has intensified the need to be asked.

I’ll admit, I haven’t always made it easy for people to ask. Sometimes I overshare. Sometimes people assume the answer and skip the question. Sometimes my situation is complicated and intimidates or overwhelms people. They feel lost about how to help. What they don’t seem to understand is that I don’t expect anyone to fix or change our situation. What I need most is to feel heard, seen and cared about.

Does this surprise you? Does it seem strange to you that no one is asking? Have you felt the distance too? After all, we’re all Covid-weary. We’re all struggling to think outside of our own heads and needs these days, aren’t we? Maybe we think we already know the answer to the question. Picking up the phone, coordinating a video call or meandering into a room on the House Party app should be simple enough. Yet, most of us are on autopilot or in “survival mode” trying to make the most of days that look very different than we expected or hoped.

In years past, I had one friend who asked the question another way. We would go for a walk together once a month or so and she would say, “how is your heart?” I would chuckle at the predictability of it but felt grateful it reflected the heart of someone who really cared to slow down and listen to my answer.

I had a telehealth visit earlier this fall as I’ve been recovering from an Achilles injury. My doctor who appreciates my broader life situation started the visit asking about more than just my leg. Her “how are you doing?” was intended broadly and she responded warmly to my long sigh. She smiled knowingly and explained that another of her patients replied to that question earlier in the day saying, “we’re Covid fine.” We both laughed and nodded knowingly. We might all use the phrase “Covid fine” at this point. Life isn’t terrific, that’s for sure. But we seem to be getting by somehow. There are good days and hard days, holy moments and horrible moments.

As my own family limps along toward Christmas creating ways to adapt, enjoy and appreciate the meaning of life along the way, we are also experiencing waves of grief. The grief has little or nothing to do with Covid actually, or even the loss of a loved one. It is just the typical chronic experience of sorrow we feel around the holidays because of how disability impacts activities and fellowship for us at this time of year.

Triggers are everywhere and often come up unexpectedly. I used to grieve every time I pulled out the Christmas stockings because I couldn’t hang them where I wanted them on the fireplace mantel because they were a safety hazard to Carly. Thankfully, I’ve grown to love them hanging along the stairway railing in our front entryway. But there are plenty of other triggers of grief ranging from disappointment that a simple church service, family game night or puzzle time needs to be carefully orchestrated like some major production.

These days, “how are you doing?” feels like a rhetorical question. Still, it helps to talk about it. Most of us benefit from having our grief feelings articulated and acknowledged.

Grief needs space to breathe.

Entering into deeper conversations can be hard. There might be tears. Emotions tend to be messy when they ooze out sideways, so it’s better to give them room to breathe in a safe and regular way. (I wrote a couple of years ago about creating safe spaces to process life, especially with special siblings.)

My prayer in these early days of December is already for something very simple. I’m asking the Lord to sink deep into our souls this lesson about slowing down and paying attention to each other. There may be no greater gift to share this year.

May our relationships become richer by resisting assumptions, courageously and intentionally entering into conversations, and taking time to really listen to each other. I’ve been reminded that I need to be more direct with my loved ones about what I need and hope for this year (not expecting them to read my mind or between the lines of my words). I’m also asking the Lord to help me listen to the spirit of what others are saying and not be distracted by the tone of their voice or their choice of words. Many of us are under a lot of stress right now. Our messages aren’t always coming across the way we want them to or even the way we think they are.

For Christmas 2020, we’ll need more grace for others and for ourselves.

Let’s give each other the gift of heart-reaching conversations. That will be music to our ears this holiday season.

Colossians 3:12
So, as those who have been chosen of God, holy and beloved, put on a heart of compassion, kindness, humility, gentleness and patience.


Next week, Walk Right In Ministries has a musical Christmas treat for you. We’re going to do a Real Talk Livestream featuring Christmas music with Regie Hamm. He’ll read an excerpt from his Christmas story One Silent Night and share personal stories from life as a special needs dad. We hope you’ll feel pampered in the resonance and enjoy some literal music for your ears.

We’ll also take questions LIVE in the Facebook comments as well as ahead of time and privately via email to [email protected] or Instant Messenger.

Find us here on Thursday, December 10th at Noon (CDT).

Regie Hamm is an author, blogger, hit songwriter, artist, and producer who has penned over twenty #1 hits, earned multiple Grammy and Dove nominations, and won SESAC’s Songwriter of the Year award four times. His solo-written song “Time Of My Life” (sung by 2008 American Idol winner David Cook) stayed at #1 for four months on the pop charts. The amazing story is chronicled in his book, Angels & Idols.

Regie has written for Clay Aiken, Backstreet Boys, Rascal Flatts, Jaci Velasquez, Rebecca St. James, Mercy Me, Clay Cross, Gaither Vocal Band, Point of Grace, Mark Schultz, Bob Carlisle, Dallas Holm, Joy Williams, Avalon and more!

Regie and Yolanda’s have two adopted children. Their daughter Bella was born in China and adopted in 2003, then later diagnosed with Angelman Syndrome.

Join us on the 10th — this will be fun!

1 Comment

  1. nimabi

    Thank you very much for sharing, I learned a lot from your article. Very cool. Thanks. nimabi

    Reply

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