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Another Chapter

I wonder if we’ve developed an unnecessary angst when our children don’t follow the script.

A month ago, I moved our oldest daughter Emily into her new room on a college campus. As we packed the van, memories of her first day of Kindergarten crossed my mind. The days of picking out new crayons and pencil sharpeners long past, this time, we loaded up clothing, sentimental decorations, a new shower curtain and a random assortment of dishes and groceries.

People have asked me if I was sad to let Emily go into this next chapter of her life. Though the change brought tears for some of us, it also brought feelings of joy and excitement for her. No longer constrained by the limitations we have in our home and the knowledge in our community about being a sibling of two disabled sisters, Emily now has a chance to carve out her own identity and make her own space.

As the oldest of our four girls, Emily was the one asking the most questions when Rachel was born severely disabled with complex care issues. Though they were content for the most part with Rachel being helpless like any baby sister, both Emily and Sophia had moments of deeper, preschool-aged wondering. I distinctly remember when Emily asked about the things Rachel would do when she grew up. “Mom, is Rachel ever going to get married?”

Milestones
I’ve often written about the living grief I carry as mom of Rachel and Janneke. There are many times when that grief is made fresh through the missed milestones of my younger girls. Then there are times when that grief is brought to the surface through the achieved milestones of my older girls.

The experience of Emily starting college has me wondering what we will be experiencing with Rachel and Janneke when they reach their final year of school. It is quite likely that we won’t be bringing Rachel and Janneke to a college campus where they will carve out their own identity and make their own space.

I don’t know if we will ever experience empty-nest syndrome in the way I hear it described by my peers. While they are slowly packing up their almost-grown up kids, we are still listening to Raffi and exploring the oceans with Blue Planet videos. Though we wonder about some type of supportive community living situation in a group home or moving more people into our home to support the girls, there are many questions that remain unanswered.

Unnecessary angst
Maybe there is a hidden blessing in the uncertainty and mystery of not meeting typical milestones. I wonder if we’ve leaned into the predictable patterns so much that we’ve developed an unnecessary angst that comes when our children don’t follow the script. I wonder if we have created hurtful expectations for each other, as we live in community. Beyond the context of disability and normalcy, I think of the young mom who is weary of being asked why her child isn’t toilet trained yet. I think of the young single man who is weary of being asked when he’s getting married or the childless married couple who are weary of being asked when they are having kids.

I’m thankful for our faithful God’s great story of creating order out of chaos. I’m thankful for Christ’s life and ministry that challenged everyone’s expectations. And it is in living with this thankfulness that I hope to see his Spirit at work in the planned and unplanned moments of our life. As for Emily, I rest on the words of Philippians 1:6, “That he who began a good work in [her] will carry it out to completion until the day of Christ’s return.”

  • The Pot family story is about faith and disability as experienced through a life of caregiving for daughters Rachel and Janneke.

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