A couple of years ago, I found myself at Hearts at Home, a conference for moms offering a chance “to be refreshed, revitalized, challenged, and educated to grow in your marriage, mothering, friendships, and faith”. Sounds great, right? I wasn’t so sure. I mean, yes, I wanted those things, but is it really possible in one day?
To be honest, I was struggling. I was spent. I felt like I was running on empty already attempting to fulfil my roles as wife, mom, and part-time church secretary. A friend suggested I go to the conference as she had many years prior, and I wanted to go, but the conference fell on my twins’ birthday – the very day, and I knew my husband had to work that night, so that meant our kids would be with someone else on their birthday. This truly bothered us way more than it did the kids as they were thrilled to be with that same friend’s family on their birthday. They had a cake, balloons, the whole gig: an extra birthday party of sorts. What could be better!?
So I went. Most of the day was a blur. Like I said, I was struggling. Life with five kids and a principal husband’s schedule was taking its toll on me, especially considering that we were beginning to see the signs of “something” in our youngest son, Ben.
“Something” … oh how I remember the question marks that hung in the air with that simple word. With my husband’s experiences in education, he had a much better handle on the things we were seeing than I did, but we aren’t medical professionals and the one I had talked to reassured me that while the nuances I mentioned were “odd”, Ben had hit his milestones, so we should just watch him. There wasn’t anything “wrong” just a lot of little things that were odd, and honestly, just made Ben, well, “Ben.” And yet, we knew. We knew in our hearts that while nothing was truly “wrong” with our son, something just wasn’t “right”. And so this journey began in January of 2011.
By the time the Hearts at Home conference rolled around, we were already two months in. We had already consulted with Easter Seals of Central Illinois, learned we were 100% financially responsible because we had a medical referral instead of an educational referral (read: we pursued an answer rather than waiting for him to be old enough to go to school and become their responsibility) and that there was an eight month wait for an appointment. Yes, eight months. God bless our case manager at Easter Seals who suggested we work with the school rather than waiting those eight months and God bless the staff at Avon who welcomed us with open arms! So while we didn’t have an official diagnosis, we had a good idea that our son may very well be on the Autism Spectrum. And yet, we really had little to no idea what we were in for.
So, when I went to this conference designed to refresh, revitalize, challenge and educate me, I knew I needed refreshing and revitalizing, but the thought of more challenge was about more than I could bear. And education? While yes, I knew I needed it, my brain was already spinning with all that was happening.
I went with a couple of friends and enjoyed the sessions, but to be honest, I can’t tell you now what my breakout sessions were about. In fact, it was the last full session of the day, when I was ready to call it a day and head home to my blessed full house, when it all came into focus. Jennifer Rothschild was the featured speaker for the closing session. Jennifer lost her sight due to a degenerative eye disease when she was 15 and now she is an author and speaker who challenges women to live a tenacious faith.
I have many great memories from that overnight getaway with two of my girlfriends. Everything from laughing so hard we cried, navigating Bloomington-Normal rush hour traffic en route to a conference without directions, and bumping into a high school girlfriend I hadn’t seen in nearly 20 years. It was certainly full of good times indeed. But the one thing I remember with greatest clarity is that moment when I realized we’ve got this. Not, I’ve got this. Not even we’ve got this in the sense of my husband and I, but we, Chris, me and God together. Sure God already has all the details of our lives figured out. He already knew what was up with Ben and that at this point I’d be writing about life on the spectrum, when truly at that point, I wasn’t even sure how to talk about it.
It came with a simple phrase from Jennifer Rothschild: “It is not well with my circumstances, but it is well with my soul.” I had to repeat that a few times and really let it reverberate through my soul before I got it. But there it was: it’s not well with my circumstances. It’s not well that we’re looking at an entire lifetime of challenges for one of our children. It’s not well that he can’t carry on a conversation. It’s not well that at that point he retreated to his room when anyone, even grandparents, come to visit. But, it is well with my soul. I can thank God that he blessed us with five beautiful children. I can thank God that in those treasured seconds of eye contact that the one on the spectrum can look deeper into my soul than the other four combined. And I can thank God that he blessed us with the opportunity to be this little guy’s family; to teach and to guide; to navigate the waters with him and to learn with him. And to share this journey with all of you in hopes that you may come to a better awareness of life on the spectrum. With awareness comes understanding; with understanding comes acceptance. And so yes, I can say with great certainty that it is not always well with my circumstances – and really, who can say that, whether it’s kids, work, family, health, or whatever, when is it ever really completely & totally “well”? It is not always well with my circumstances, but it is well with my soul and I will give thanks. I may not be thankful for the circumstance, but I can give thanks in the circumstance.
Give thanks in all circumstances, for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:18