It never occurred to me until we were well into it, that suffering could be ongoing. In fact, when my family first began to get sick all of the time, I chalked it up to it being a seasonal thing. Then, when my children changed before my eyes and the days became extra challenging, I reasoned that it was just a developmental phase. When we had a botched home renovation and mold, I thought it must just be a trial. When the viral infections transitioned into more aggressive respiratory issues, I wearily concluded that it was random and would fizzle out. For 4 years, while all of these things continued to happen, I would repeatedly say "this is all temporary." I truly believed that it would pass.
About a year and half ago, I was listening to a podcast where a woman was sharing about the lifelong challenges that her daughter faces. Sixteen years into parenting and the woman was talking about how isolating her daughter's condition could be and she made the comment that most people don't know how to enter into long term grieving/suffering with others. At this point in my journey, I was weary and overwhelmed but I had not made the connection that we were experiencing long term suffering ourselves. But after hearing that comment, I immediately began to cry. It hit me like a freight train: my family had been and still was in a place of long suffering.
I cannot tell you how isolated, alone and misunderstood my husband and I had felt for all of those years. There were many times when we couldn't go to a birthday party or a church event due to the nature of what was occurring inside of our home. We had to be so intentional about our approach with our children and their health and as a result, we had to say "no" to a lot of things. My husband and I were also exhausted and didn't feel well, ourselves, so the act of going to our church 45 minutes down the road on Sundays often felt insurmountable. Whenever we did actually make it out of the house, we would feel out of place and would write narratives in our heads about what other people thought of us or our "misbehaved" kids. Once we were able to get some answers about the root of our illnesses and the boys' neurological conditions, we then had to be mindful about avoiding big gatherings, missing bedtimes, eliminating most processed foods and limiting screen exposures.
I'm telling you- we have felt stranded, isolated, misunderstood and ostracized.
As someone who has felt that weight heavily, I recognize that a lot of the judgement from others most likely only resided in our minds. I do think that, in an effort to not complain too much, I exasperated the situation by not being open and transparent with our friends, family and church about our aches and needs. In fact, only very recently did I begin to share a little more openly about some of the ongoing ramifications we are living with. The tenderness and grace that we have been met with has been salve to my heart.
On the other side, our experience also makes me want to be mindful, while encouraging others, to step into that space of suffering and grief with others when we see it. I want to be a safe place for the hurting to sit with. I desire to be a source of comfort and encouragement to the weary. I want my mind and heart to stay engaged with others- not just for the initial week or two of their pain, but for the long- haul. That is where I think the balm is- in the friends and family who are not afraid to enter into the dark spaces to hold your hand, however long you need it.
So what are some ways that we can be engaged long-term with our suffering loved ones?
I have some thoughts and ideas of what would have ministered to my heart that I can share at another time, but I would love to hear any thoughts or ideas that you may have- no two experiences are the same, after all. How can we continue to walk alongside those who have been grieving or suffering for a year? Five or Sixteen years? How can we link arms with those who don't necessarily have a light at the end of their tunnel?
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