Our family devotional recently included a piece on sorting through that experience, battle, diagnosis which is or seems truly insurmountable.
Our family devotional recently included a piece on sorting through that experience, battle, diagnosis which is or seems truly insurmountable. There are times when I do feel as if we have met our Waterloo in this journey of parenting our girls, yet then there are small victories which nudge us forward. We waver between “we can’t do this” and “we’re going to be okay.”
This past May, we celebrated Rachel’s tenth birthday. Ten years of Rachel’s life means ten years of swimming through the often murky waters of living with special needs as primary caregivers, first with one, and then later with two complex care kids. Having two typically developing kids who are older than Rachel and Janneke has taught us the ups and downs of the already demanding role of parent, but we learned almost immediately after Rachel’s birth that parenting special needs would add complicated layers to that responsibility.
Being that the number 10 is significant for our family this year, I thought for this summer, I’d put my thoughts into a list of 10 learned lessons . . . in no specific order. Here are five:
1. Our strength and ability has been tested in numerous ways. When the hospital staff told us we’d be feeding Rachel “via g-tube,” we were as puzzled as some of you might be reading this. We learned a g-tube (gastrostomy tube) meant a small silicone tube would sit in a surgically created opening in Rachel’s stomach. Using a feed pump and syringes, Rachel would thrive on a liquid diet via g-tube. We also learned this marvelous bit of medical technology would need to be replaced every couple of months – or sooner if the piece were to malfunction. I remember both of us breaking out in a sweat when we had to replace Rachel’s g-tube for the first time. Now we can recall moments when we have replaced a g-tube in the van or in the dark while camping. Huzzah!
2. I have been surprised at who relates to our experience and our emotions. Sometimes, the greatest encouragement comes from the least likely individual. To that, I credit our unpredictable, humourous and omniscient God.
3. I am learning to see those who sit on the periphery of normal, as I become conscious of how much our society/culture creates a false sense of normal, often based on privilege. The words we choose, the ways we interact, the routines we keep and the unintentional apathy we settle into fosters a disconnect we don’t understand until we are the ones not connected. It is hard not to be bothered by the stares of folks when we are out, but my kids have us to protect them and open the conversation. Not everyone is in good company. Lest we forget, being alone is incredibly disabling.
4. We have learned to laugh at what we can, acknowledging that even dark humour is good medicine. When we can laugh at ourselves or laugh at the darkness that threatens our joy, we experience a release that would otherwise be suppressed and then grow into something ugly. Ralph and I experience an odd comfort in making jokes or creating stories while waiting in the hospital with our girls.
5. Though we scoffed at those who told us our marriage would fail with the arrival of a special needs child, our relationship has been stretched to the point where it often feels fragile. We recognize that the constant stress of caring for our girls places a constant weight on our shoulders. This weight often seeps into our everyday interaction, causing friction and tension. We have learned to acknowledge the different ways we deal with stress, and we try to give grace and space to each other as we individually sort through our living grief.
Perhaps #5 is one of the biggest and most challenging lessons learned: giving grace and space to each other as we move through what at times seems impassable.
And so, I wish you grace and space for your summer. The second half of the list is coming.