Recently, I was digging through the hall closet, trying to find a stray spool of ribbon, when my fingers felt something familiar. I gently grasped my “find:” a large roll of papers, bound by a rubber band. There they were…the blueprints drawn up by the architect in Maryland nearly 12 years ago. Tom stepped into the foyer and saw that I’d unearthed them. He grinned, and implored, “You’re not going to throw those away are you? I mean, we paid for those…” We laughed, as we have so many times when we run across these plans. We unfurled them and had a look at the renderings, commenting that we had forgotten about the bay window we’d planned for the living room, and admiring the layout of the master bedroom. After a while, we carefully rolled them up, and gingerly placed them back into the corner of the closet, where I imagine they’ll remain for a long time.

Those were MY plans…but God’s plans were infinitely better. I sometimes wonder how different our life would have been had we followed through on my small ideas. I can’t fathom what our journey into special needs might have been like if I’d been in charge. God knew exactly what–and who–we would need. He had gone before us, planning every earthly moment with an eternal perspective.

Annie and Bill~first day of school 2010

As I write this, Annie is driving (!) to Kmart with Tom, trying to log more road time so she can get her driver’s license. She’s a junior in high school now…she plays the cymbals in the marching band, and is student director for the fall play. She’s beginning to consider life after high school and talking about careers. We still have scary days, and times that are frustrating and painful. Still, we are in a pleasant (albeit busy!) season with her.

Bill is 14 now and loves baseball, music and acting. I sometimes wonder if his acting talents were sparked during Annie’s hospitalization, as he performed his renditions of Winnie the Pooh for us in waiting room! He has grown four inches in the last year, and conquered the high ropes course at summer camp. He is also developing a wickedly funny sense of humor, which provides great entertainment at the dinner table. He joined the cross country team this year, a new experience for him. After his very first race, he breathlessly, and with great pride, told Tom, “I ran the whole way. I never stopped.”

This reminded me of my sister’s comment so many years ago in the PICU waiting room: “This is a distance race. It’s a marathon, and not a sprint.” This forewarning about endurance was a biting truth. Raising a child with disabilities does require endurance. There have been many days (and there will be many more!) when I’ve wanted to push it all away and say, “ENOUGH! I can’t do it anymore. I’m tired. I’m scared. This hurts.”  On these days, in the midst of our grief and pain, God gently lifts us (or, when we need it, gives us a heavenly kick in the pants!) and we keep moving forward.  I hope I can continue to run this race with the same determination and spirit I have come to admire in my own children. I know I won’t be running alone…God has already proven that. I marvel at the number of people He has brought together to coach us, cheer us on and care for our aches and pains…even carry us as we have struggled.

Some of you might be traveling a similar road as you raise children with disabilities…you are familiar with the jousting and joys this experience entails. Some of you might be learning about disabilities for the first time, and wondering how you can help. Wherever you are, and whatever your journey, I hope you will continue to visit me here for encouragement, information, and inspiration (and good fun!) as we endeavor to reach our goal of finding a church for every child.

Let’s press on together, with endurance, so that we can tell our Father, “I ran the whole way. I never stopped.” And when we’re done, Jesus will be there at the finish line. I’d like to think, just as Annie predicted, that He’ll pick us up, and put us on His shoulders…and He’ll carry us Home.

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.

When we arrived at the church that first Sunday, Toni greeted us at the door. It was a busy place, as most churches are on Sundays…mothers holding babies and heading for the nursery, musicians warming up for the service, children laughing and running through the narrow hallways. We took Bill to his classroom and received an unexpected surprise: Mrs. Sally, Bill’s teacher in the Bible Study Fellowship children’s program, was there! Bill adored her, and easily separated from us and settled into his class.

Toni walked us to Annie’s class next. I began mentally preparing for my next task: Explaining Annie’s medical issues in a way that would inform, but not

Dr. Rick Kratche

 frighten, the Sunday School volunteers. We had become somewhat accustomed to this, but it was never easy. I wished for the ease of just dropping off my child without a long-winded, complicated and fear-inducing speech.  We arrived in the first grade classroom, and were greeted by a tall gentleman with dark eyes and a heavy beard. “I’m Rick Kratche,” he said as we approached. Annie quickly joined Toni’s daughter Wesley at the table. I drew a deep breath and began explaining Annie’s health issues. I told him about her tendency to wander and also what to do if she had a seizure. He listened patiently, without interrupting, his expression kind, but never shocked or fearful. When I finished, he smiled and said, “We’re so glad Annie is here today! And, as it happens, I’m a doctor. I’m going to keep a close eye on her during Sunday School, and that way, you and your husband can enjoy worshipping together.”

We began attending regularly, and joined Toni and Pete Donoghue’s small group. These new friends became an extended family to us, and we enjoyed studying, laughing and sharing our hearts. They listened to our fears about Annie’s health, and our worries about her learning. During these times, they anticipated our needs and provided support. When both kids got strep throat on the morning I was supposed to meet with the superintendent about Annie’s school program, Toni called and said, “I know you have that meeting today…bring the kids to my house!”  Pete and Toni also babysat for our kids several times, which allowed Tom and me to have some time alone without worrying about  budgeting for a babysitter.

When Annie was readmitted to the hospital in third grade, Toni organized an afternoon visit of several friends. The room was soon filled with giggling third grade girls who were having such a good time that they tripped one of Annie’s EEG monitors prompting the nurse to run down the hallway in a panic. When she arrived, she simply smiled and said, “Oh, well…it looks like there’s not problem here!”  Later that week, when we returned home, Dana

Sheri and Mike Halagan

Martell arrived with a meal and plenty of time to sit and listen. As time went on, we received even more help and support. For example, Sheri Halagan, a master teacher, helped us with educational planning over the years as well as providing practical suggestions with a long-term, wise perspective.   Another time,  our friend Laura Burks arrived on our front porch with a box of mouth-watering popsicles when she heard Annie had been having seizures and needed fluids.

When Annie was in fifth grade, she wanted to attend the camping trip with the children’s ministry. Since I had been her Girl Scout leader, she hadn’t been camping without me, and she was ready to try this. I was both thrilled and concerned at this step of independence. While I knew she needed to do this, I was worried that she would be able to manage all of the activities; she still fatigued so easily. In addition, I was fretted about her ability to socialize on a weekend-long trip without the support of someone who understood her language issues. I spoke with Lori Wilson, a volunteer who was attending, about this. She willingly listened to my concerns, asked questions and made notes on how to support Annie and set her up for success on this trip. Annie had a wonderful time! And, on the Monday after the trip, I got a call from Lori, her cheerful voice asking, “SO? How do you think it went? Just checking on you…”

Lori Wilson

When we started attending our church, in 2001, there was no established “Special Needs Ministry.” However, we DID have special needs, and we received abundant care. Our church family, each member using his or her own unique gifts, provided just what we needed. We experienced God’s love through grilled chicken, giggling girls, play dates, prayer and popsicles. In 1 Corinthians 12, the Body of Christ  is so beautifully described, reminding us that we all serve a unique–and necessary–purpose in strengthening the Kingdom.

As we continued our journey, this Godly brand of “Body Building” strengthened us and gave us the courage to press on.

Coming up in Chapter 23: Long-term healing, and looking toward the future