Parenting, off the grid

I can't remember how our paths crossed, but I've followed Sara Pot's blog The Pot Family for a while and it was a treat when Sara and her husband Ralph attended our talk with Ian Brown. I asked Sara to tell us a bit about her family. The photo above was taken by Elma Regenerus. Check out this post of Sara's for more photos of this one-of-a-kind family. Louise

I've been told that I am a reflective thinker – or maybe even too reflective. Truth is, since the birth of our two youngest daughters, I find myself questioning all the patterns and parameters I had previously assumed. Raising children who need unique care plans and unassuming expectations (can't assume any typical milestones) has challenged my perspective on living. We're in a society that is inundated with information and advice on how to parent and live, but many of us are raising kids that don't fit a typical pattern, whose lifestyles don't fit a tidy set of parameters.

Ralph and I have four daughters: Emily is 10; Sophia is eight; Rachel is six; and Janneke is three. Emily and Sophia achieved the typical milestones in their early development. As they aged, we also grew as parents, learning from our mistakes and celebrating their achievements. Their personalities are very different from each other, yet they both make us laugh and they both have a passion for their little sisters.

Rachel and Janneke are similar to each other but unique from other children. They are globally developmentally delayed, with a diagnosis that is currently under investigation. Both girls are affected in all areas of living, including eating, communication and mobility. Rachel and Janneke are g-tube fed 24-hours a day, and their sounds are similar to a baby, still exploring her voice. Janneke is able to use a Pacer (a walker) to move around on her feet, and Rachel uses a standing frame for periods of time throughout the day. Both girls are unable to independently stand or bear weight on their feet.

Rachel and Janneke are cheery girls, with smiles for those who provide their care. Their joy balances the tears, frustration or middle-of-the-night anger I might have when managing the tube-feeds, dealing with doctors and specialists, and recognizing the limitations placed on our family.

Ralph and I cope with humour and, more importantly, with our faith in God. We might wrestle our entire life with why our girls are disabled, but there are some questions that will remain unanswered. I'd rather choose joy and figure out how to make the most of what we've been given. We trust that God will give us the strength we need, one day a time. And hopefully, the better days will outweigh the crappy ones!