It has been a different summer for us. Our twin girls, Annie and Audrey are now 16 years old and are the youngest of our four kids and both are profoundly affected by Tuberous Sclerosis Complex. Our family has been through many seasons, partly because we live in southern Ontario, Canada, where our seasons are well defined by the weather. As most people with such different seasons, we look forward to change and especially spring and summer. Personally, I love all the seasons, though physically, things are just easier for us all during the warmer months.
For typical families the sunshine, the warmth and the longer days usually allow for times of making memories, fun and rest. I count myself fortunate to have stayed home during my kids growing up years, so it would seem I haven’t missed out on much. As a parent, who has always relied on the help of caregivers, I have learned that my job isn’t to witness every experience my kids have, (though I do relish those moments), but it’s to prepare them for adulthood and provide opportunities for them to learn and grow on their way there. My two eldest are now adults and becoming more independent. My two youngest are 16, require 24/7 care, and will never live independently.
This ongoing season of disability hasn’t always been easy for our family, yet I have continued putting my trust in Jesus as I press on, and the Lord faithfully makes my path straight. I press in, so I CAN press on has become my theme this year. But what does that mean? Do I really flip some kind of switch in order to gain supernatural powers? I’ve learned that pressing into Jesus looks different for different circumstances and in different seasons too. Sometimes we need wisdom for a medical or school decision and sometimes we need help during a violent meltdown. Both require active trust in God and sometimes some proactive spiritual warfare.
One day during my quiet time with the Lord, I read from Sarah Young’s devotional book, Dear Jesus, that there are times when I allow my feeling of security to become, quite dependent on my circumstances. Not that I’m ungrateful for this summer of contentment, but do I really feel at peace BECAUSE of it? I don’t think so. I recall knowing God’s peace even during the stormiest days. I call it illogical joy. I thank Jesus for this summer of contentment and although I know there are more difficulties ahead, my joy is not stolen away. Wait, did you catch it? How have I overcome the dread of what might happen in the lives of my disabled twins, and how can I continue to feel safe , even when things are messy? What do I do practically? Is there a specific THING I even do? What does God do? How does He respond? Can I really DO anything proactively that will help during an escalating meltdown or is that just something we special needs families just recover from… eventually? I assure you, there is hope and help in this simple thing I do and I believe you’ll find it and be able to encourage someone else too. So, what’s this secret weapon?
Jesus. I speak the name of Jesus. I sing songs with the name of Jesus in them. I cry or whisper, “Jesus help us.” I soak in the presence of God as I listen to worship music, allowing the Truth to wash over me. Often, “Jesus” is uttered through my tears because decisions and meltdowns are mind-bending, often chaotic and usually messy. Even though only some members of our family have the disability diagnoses, disability affects our entire family, all of the time.Young advises, Stop whatever you’re doing (even a brief time-out), from the confusion. This is extremely beneficial. As I turn my attention to Jesus, saying His name, He helps me see from His perspective. If it’s not an imminent emergency, give yourself time to slow down. This slower pace makes it easier to stay conscious of Jesus when I return to the messy situation. Sometimes retreat from the messy situation is impossible, (like in the middle of a violent, autistic meltdown or during an adult-sized diaper change that isn’t going so well), so my challenge is to retreat to a place of inner calmness while my mind and body keep problem-solving. Since Jesus lives in my heart, His peace is accessible to me there. I can ask Jesus to, increase my awareness of His Presence and when in crisis (especially), I am to keep returning my thoughts to Him by whispering ‘Jesus.’ His name is a strong tower (Proverbs 18:10); as I RUN to it, I am safe. Feeling safe matters, especially when our material surroundings are being aggressively destroyed or our own bodies attacked by the ones we love so deeply and care for so lovingly.
I’ve been practicing speaking the name of Jesus for years now. At first it was during times of crisis and frustration with God (and sometimes still is). My cries were desperate and even angry as I navigated this new world of parenting children with multiple disabilities. Crying out to Jesus is innate because we were created to need His help and His saving. I’m certain most people have found themselves in such a situation, whether they believe in Jesus or not. I have learned that the power of speaking the name of Jesus out loud helps not only me but whomever is near me, the child in meltdown, or another family member or caregiver nearby. The peace of God is present and palpable. Even in the messy, He is Emmanuel, God WITH us.
Perhaps you, as a church leader, are unaware that this is the reality many special needs families face, some for very long, ongoing seasons. Don’t forget them. Even 16 years or more into the journey, they need you. They need the love and support of the local church. They need pastors to guide them. They need friends to be near them. They need prayer to cover them. They need to be asked to serve with them. Although a season of contentment may appear, families like mine cannot help but fear what difficulty may lie ahead. It’s not that we live under a dark cloud of worry but we know that seasons change, many which often bring familiar yet shocking storms all at the same time.
I thank God for this different summer. Contentment is something I often beg God for. Our girls are happier, seizures more controlled, anxiety at bay and moods mostly stable. We’ve been able to take them or send them out with more ease, and their joy in new experiences is a gift I don’t take for granted. As a parent of non-verbal children, I can’t help but wonder about what might be going on with them as they nap the days away-their energy levels low, the latest diagnosis, or if riding the school bus will be a problem yet again this fall. These are real concerns and I run to Jesus with each one. I consciously lay my burdens at His feet, asking Him out loud: “Jesus, help us,” I know He is the strong tower whom I can always run to, the one who keeps me safe, even in the messy.