I’ll always remember October 2007. It was the month Marcus was diagnosed with Joubert Syndrome.
My pregnancy with him and his labor/delivery were uneventful. But when he wasn’t visually tracking and then developed an intermittent head tremor, we knew something was wrong. After seeing several specialists, we finally had him undergo an MRI and subsequently received the phone call that changed our lives. At worst, we had thought he had a vision impairment. But when the doctor told us of the diagnosis, she rattled off a list of challenges that “some – not all” children with JS face. So, in one phone conversation, we heard terms that no parent wants to hear: developmental delay, poor coordination, physical disability, mental retardation, vision loss, kidney failure. In her own words, she told us to rule out a “normal” life for our precious boy.
I remember Mike and I fell asleep in each other’s arms after crying and praying. How we got out of bed the next day remains a supernatural act of God because I felt like the news we heard the night before had strangled us to the point of suffocation. Even more miraculous is that we also went to the pumpkin patch that morning because we had already promised Audrey we would go. So we took pictures, cheered on Audrey in the bounce house, and picked pumpkins. Only the Lord knows how we got through it with smiles, when inside, our lungs had collapsed. It was purely the grace of God pumping oxygen in our bodies to be able to take each breath.
Marcus was 4 months old then and at that point had very little head control. He also had not developed his ocular motor strength/coordination at that point, so the possibility of blindness was still very real. His future was so uncertain and hope for him was very small. Needless to say, seeing a child in a wheelchair at the pumpkin patch made my soul drop even more. Later on that day, Mike went for a run and came back with tears after seeing a father teach his son to play baseball. We realized we wouldn’t be able to see the world the same again anymore.
One unexpected thing for me, that I didn’t expect, was how my identity would change. Being thrown into the world of special needs, I felt like I wasn’t just Marcus’ mom anymore. I was also his OT, PT, speech pathologist, psychologist, advocate, and nurse. I have often felt like I had to introduce myself to people as a mom of a child with special needs because it consumed my body, heart, and mind so much. But even though October 2007 has changed our lives forever, and though we can never go back to how it was before, and even though it is such a heart-wrenching and consuming journey, it’s so good to remember Galatians 2:20.
I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.
Although often forgotten, this verse has recently been a sweet reminder to us. Knowing that we are bought with the precious blood of Christ, and that He now owns our lives is a comfort. Remembering that it’s not about our life, but about His life in us, is a refreshing reality check. Seeing that we don’t have to live this life perfectly, but to live by faith instead, is reassuring. That He loved us and gave Himself on our behalf so that we wouldn’t have to be swallowed up by this life is a relief.
It’s been 2 years since then. Two years along in our Joubert Journey, which means we are still just running our first of many laps. But it’s amazing how much we’ve experienced and learned since then. The breathing is still purely by the grace of God. And though we often get angry we can’t just breathe easily on our own like we used to, it’s good to know that we need Him desperately and that He provides His grace lavishly.
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