As the months and years continued, our “new normal” transitioned into just “normal.” The time finally came when we had lived with Moyamoya disease longer than we had lived without it. And while the illness was part of our daily lives, it didn’t consume us as it once did. Medical tests, school meetings and neurology appointments appeared on our calendars, but they didn’t intimidate and overwhelm us as they once did. We felt more balance and equilibrium, and enjoyed our life as a family.
We learned, as time went on, that the grieving process was not linear; we “re-grieved” when circumstances reminded us that our life wasn’t wholly “typical.” Adjustment and acceptance took time–and effort. About two years after Annie’s hospitalization, I became increasingly anxious and depressed. I talked with my sister about this a few times, wondering aloud WHY I was so edgy. After hearing the same complaints repeatedly, Betsy asserted her “big sister” authority: “You need to get some counseling,” she ordered. “Either go on your own, or I’ll come down there and take you myself.” I knew she was right, but the LAST thing I wanted to do was re-hash this whole experience with a complete stranger. Toni Donoghue joined the “counseling chorus,” and I knew that I had two “big sisters” with my best interest at heart (plus, they were a force to be reckoned with…) Toni offered to watch Annie and Bill while I went to my first appointment. I nervously waited my turn in the cloistered outer office. When I was called in, I reviewed Annie’s story with the counselor matter-of-factly, and then summed it up by chuckling, “I probably have Post Traumatic Stress Disorder.” The counselor regarded me seriously, saying, “Don’t joke…that’s exactly what you have!” Her words were affirming…this had been traumatic! Talking with an objective professional was a very helpful part of healing for me.
While I grieved like a mom, Tom worked through the process differently. His response to Annie’s health issues was sometimes denial; he coped by dismissing or minimizing symptoms. When faced with diagnoses or unfavorable test results, he also expressed frustration and despair. The inability to “fix it;” made him feel ineffective as a dad and husband because our circumstances were beyond his control. Through this, God continually provided that perfect emotional tug-of-war: when I was feeling low, worried or overwhelmed, Tom’s strength and steadiness pulled me up. Similarly, I was able to use my “up” moments to hold onto his heart and steady him when he was troubled. This “tug of war” never resulted in a winner or loser, but rather a continued connection, because we were blessedly holding tight to a cord of three strands.
We also noticed some “post-traumatic stress” in Bill. Several years after Annie’s stroke, our church made a short video of our story to encourage others. We watched it as a family one evening. The video contained pictures Bill had never seen of the hospital experiences~ there was so much he didn’t consciously remember. He ran from the room, sobbing. Although he had recovered from his separation from all of us during that time, we realized that the experience had affected him profoundly. That evening, we talked quietly about his wonderful contributions to our family,telling him that he had been the impetus for much of Annie’s language recovery. He absorbed this information, then gazed at me, his brown eyes serious. “I was a miracle, wasn’t I?” I smiled. “Yes, buddy. You sure were.” Several weeks later, when relatives were visiting, they remarked on the progress that Annie had made. Bill assertively stated, “You know…I was a miracle when she was getting better.” He had proudly claimed his place in the story, and knew how very necessary he was–and is–to our family. Just by being himself.
Of course, Annie had her share of adjustments to make…physically, socially and emotionally. There have been many tears over homework, broken promises and hurt feelings over the years. She has endured the indignities of the hospital and the uncertainty of test results, as well as the ignorant taunts and statements by children~and adults~ who just don’t “get it.” Still, each year is easier than the one before, and she continues moving forward with courage and grace.
A few years ago, Annie created a book called “Someday” for my Christmas present. In it, she described her plans for the future. Each page began with “Someday, I will…” I read her left-handed print, gaining insight into her thoughts, and absorbing the hopes and dreams that leapt from each painstakingly illustrated page. And then, as I neared the end of the book, I turned to see this heart-stopping entry:
Yes. Your mom will be so proud.
And so will your dad.
And so will your Father. But He won’t be surprised. He has all of our “Somedays” perfectly planned.
Be sure to check back for the Epilogue to our story.