We were were recently asked to speak of our journey as a family at an evening supporting Joni and Friends, Greater Philadelphia. Here are our notes describing (pretty much) what we shared:
Good evening....with introductions.
This past March we enjoyed a business trip meeting in Puerto Rico.
Fifteen years ago we were at the same resort, different business trip and different company, and while I left the resort this time with a cup of Starbucks in hand, I left that time with a bowl of plain rice to go because I couldn't keep anything else down. I was pregnant with twins and planning to tell the world when we got back.
As I ate that bowl of rice fifteen years ago I had NO IDEA of the ride we were in for...that these two babies would arrive ten weeks premature, develop cerebral palsy as a result, and our lives would never be the same. It's probably best we can't see into our future. That's not to say the journey has ended. Nope, we are still learning to maneuver the twists and turns of life with disabilities, to grieve when we recognize the loss of what typical expectations and transitions we had, and to celebrate the gift of life. Our time back at the El Conquistador resort caused me to be very introspective.
When we look back over the past years we have a few reoccurring themes to share...
First, this life was too much for us. It absolutely is. It's a God sized job requiring the family of believers to participate. Trying to handle it on our own led us to ache with feelings of fatigue and isolation. We had to get used to living transparently, humbled and without secret. We needed to allow anyone and every one in, regardless of the "mess" (physical, emotional, spiritual, material...oh yeah, there's a lot of mess). Funny thing is, about thirteen years ago, in the midst of feeling alone and asking God to send us relief and wisdom, Jerry and Joan Borton were in the midst of opening their office in Souderton. Our first encounter with them was at a family retreat held at spruce lake camp. Coincidentally, that summer spruce lake camp had no openings for us for a family getaway weekend on our own at their lodge, but they did tell us to contact Joni and Friends to see if they could meet our needs through their family retreat program.
Our first week at family retreat was memorable with a visit from Joni herself....and a lot of crying from the twins at being left in nursery care. Our older two daughters enjoyed every minute of it as they ran around enjoying camp activities, free from concern for their parents and baby sisters. That alone made it worthwhile. Truth be told, there was plenty of crying from me as well, as I found myself surrounded with others at different places along their own journey of disability and felt myself being ministered to in a unique way. We went back almost every year since then, even spending one week at a family retreat in California. All four daughters have grown in faith, friendships, and worth as a result of these special times.
Well....they went back almost every year since then. Truth is, after that first year I wasn't thinking it was for me and that I was better off using that free time to do some projects back home. After years of camp, the girls all had a special place in their heart for the ministry of Joni and Friends and I began to feel challenged to invest in what my family found to be a time so healing. Once I committed to attending the full week five years ago I began to appreciate the times of teaching sessions for us as a couple, sharing confidences as men, and relaxing as a family.
Turns out, camp was, and is, for ME...A man, husband, father affected by disability.
We need others to keep us strong. In Ecclesiastes 4, new living translation, it reads:
9 Two people are better off than one, for they can help each other succeed. 10 If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. 11 Likewise, two people lying close together can keep each other warm. But how can one be warm alone? 12 A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.
We need strands to weave in with, lots of them. Not just during a week of the summer, but all year long. it's hard to do that, it makes you vulnerable. When living with disability it seems you are going to do all the taking and never the giving. But that's not how God has worked. God has a much bigger plan than here and now....and a huge part of that requires us to weave in with others. For that reason, I am grateful to my friend for giving leadership to our JAF men's support group which meets the first Monday of each month at my home church, Immanuel church of the Nazarene. And while we do sit around and talk about our feelings some, we really look forward to shooting a game of pool, watching the three stooges, watching a movie at a local theater, eating wings and especially our night out at the Iron pigs game.
It's no secret that women tend to enjoy getting together to talk and share feelings more than the men. From very early on in our journey I was privileged to meet spontaneously with a few local moms who were also navigating the world of disability. At some point I asked Joan if we could meet more officially under the lead of Joni and Friends. I volunteered to host the group if she could lead it. She agreed and years later we have outgrown our dining room table! Candy has been faithfully leading us in a time of devotion or study after our gathering begins with coffee and snacks. There is NEVER