An Ongoing, Living Grief

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I wandered unsuspectingly into a place of deep grief the end of last year. The onset of Advent, a dark season where a weary and broken world awaits a Savior, became intensely personal and painful to me.

On the outside I was functioning well. I was on top of my Christmas shopping, the house was decorated, I made it to all of my son’s scheduled therapy appointments, I even had my extended family of 11 visit for my Grandmother’s 90th birthday party. But on the inside I was not in a good place. I’ve always been prone to anxiety but I have done an excellent job at managing it. I’ve even become quite proud of my learned coping skills.

So one day early last December when I began pacing an empty and quiet house, with my heart beating fast, and having to consciously tell myself to breathe I knew I was in trouble. I had never experienced a panic attack before, but that’s the closest way to describe what I was feeling. It terrified me. I couldn’t afford to “lose it.” I had two other people depending on me for their basic needs. My ability to compartmentalize my feelings was decent, but then one day it wasn’t. I spent the majority of the day in tears. Though I was no stranger to grief, something was wrong.

The first two years of my son’s life I spent grieving. I walked around with a hollow feeling in my stomach and a tingling in the back of my legs. Why was this reappearing at Christmastime? My mind flashed backward to days-upon-days spent in the NICU with nurses rushing about my son’s bed skillfully urging him to breathe. Then it would wander forward to wondering what the future held for my son and whether I would be around to care for him. I was living in all the low emotions, struggling to find hope and joy even as everyone else was singing “Joy to the world.”

New layers of grief keep coming. It’s been very disorienting. In the beginning I naively thought that I would rise above my circumstances of having a child with disabilities using my super mom powers and be able to learn and organize my life. I thought things would slow down, because a person can only deal with so many hard things after all. At times, I even thought he wouldn’t live past the age of two and there would be my mournful relief.

I think I’m starting to understand it better, even though it is incredibly lonely. Being a special needs parent involves a sort of loss that is different. When you lose a loved one, a job, a house, whatever the loss is, you live without the physical presence of that person or thing any longer. That’s what makes the loss so hard. When you lose the child you thought you were having to one who is disabled, you live with the physical reminder of the loss day-after-day. That’s what makes this type of loss so hard.

Having a child with disabilities means living with a different type of grief. It’s dynamic. It’s ongoing. I don’t think that you ever get over the death of someone close to you, though living with a person who is physically and cognitively ill-equipped for this world brings with it an ongoing and living grief that can wear away at your soul, body, and mind.

I struggle to find a parallel. It’s really unlike anything else I’ve ever had to grieve. It’s exhausting.

As this holiday season approaches I find myself getting panicky about all that needs to get done in the midst of the day-to-day challenges of life with Nathan. I also find myself grieving again. It’s been a particularly hard season for us peppered with lots of change and people leaving. You hear people say, “The holidays are hard.” I think the holidays are hard because they create additional pressures and expectations for an idyllic Norman Rockwell experience that few of us can actually create (though my mom did a pretty darn near perfect job). Plus, they bring up memories of loved ones who are no longer with us or loved ones that are still with us but not very frequently or in the way we expected.

One thing we never lose is the presence of Christ. I am reminded of that heading into this advent season.

“The virgin will conceive and give birth to a son, and they will call him Immanuel” (which means “God with us”). – Matt 1:23

I am still learning what it looks to live this way–with an ongoing grief. If I deny it then it will eventually release itself in some explosive way. If I stay in it too long the sadness will overwhelm me to the point of not being able to take care of my kids.

My hope and joy comes, though not in the way I expect. My joy comes in the midst of the crazy life I live. A life of tube feedings, therapy appointments, specialist procedures, and home catherizations. My hope comes as I am working on healing and rehabilitating my hip and back. My hope is in Christ alone. He is here with me in the midst of it all. I can focus on that this season.

I have found beauty in the quiet moments, when I have taken time to embrace the pain that comes with having a child with disability. There are rare moments in which I can see through to Nathan’s soul and I feel connected to him. He looks me in the eye with the innocence that is so pure and untarnished by the world. He gives no care to what others think of him and his disability. When he gives me a wide, open, and joy-filled smile. I know in that brief moment that he too experiences joy here in this world. A world that is broken and poorly able to love him well. When he says “mama” in his weak, whisper of a voice. I know that he knows who I am and the place I hold in his life. Nathan is exactly who he was meant to be.

Though I wish it were different. I wish that he did not have this genetic disorder that limits him in virtually every way. But I am grateful for the moments of joy that I get in small slivers. And I too can sing, “Joy to the world, the Lord has come.”

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!


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