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.
Diving for Pearls 
Beautiful job on your family’s journey. It was amazing when you first posted pics of Annie in the PICU I immediately recognized her. You all have been through a lot but you continue on this journey with strength and grace.
Katie….
Thank you for sharing this scary but wonderful journey! Your talent for writting just amazes me. I sat down and read your story from beginning to end and the entire time your unending faith stuck out. I cried, laughed and rejoiced throughout your beautiful stories of pain and joy. It is truly amazing to see how God works and to witness it yourself. I feel blessed today having read your family’s story!
God Bless you and your family sweet girl!
Sandy
Ah, Katie, isn’t Hebrews 12:1-2 our mantra as parents of kids with special needs? If God didn’t give us that endurance for the marathon we’re in, how would we ever make it? It just compels me to share that with others…
Oh, Katie. I just read the whole thing, and I realized at the end that I’ve been intermittently holding my breath. You are precious, and I am thankful that you took the time to write this all out and share it. I didn’t dare comment on any of the posts before now because that would have paused the story and I certainly didn’t want to do that!
Tears, my friend. And joy. Considering that I’m right about at the same point in the parenting journey as you were when Annie got sick, I could vividly picture what it would be like to leave Robbie in the care of others or to imagine Jocelyn’s attempts at understanding it all if that happened to her. And the experience of grieving when no one died .. oh, my friend, I have been there with my health issues.
His plans are always better than ours indeed.
Dear Shannon…Thank you so much for your sweet words. God’s plans ARE always better than ours. That’s just the message that I prayed would come shining through when I wrote this…it’s HIS story for sure. Blessings to you on this Mother’s Day, my friend, and thank you from my heart for your encouragement!
Thank you for sharing your story. It is full of hope, faith, and the tremendous grace of God. Blessings to you and your family. God’s mercies are new every morning.
Wow! Amazing story! Beautifully written. Thank you for sharing this. If this isn’t a book it certainly should be. God’s plans are not out plans…his ways are higher than ours! That’s definitely a lesson I needed.
Katie: I know you receive many replies to your family’s story, many sound the same. Although I do not have a special needs child in my life, my youngest son and I experienced a scary hospital stay during and after his labor. As I read your story, I reflected back on those memories and wanted to thank you for reminding me of a great Father in Heaven who does care for his children;They are all special in His eyes. I should say WE are all special in His eyes. I, too want to stand at the final gate next to Christ and tell Him, “I did it! I ran the whole way and didn’t stop!” Thank you again for sharing your story in all it’s rawness along with the “discoveries” that Father had been watching over you all along. Thank you, thank you, thank you.
Sincerely
Katherine A.
I have been riveted to your story for over an hour now…reading piece-by-carefully crafted-piece…what a beautiful story it is! I wish I could read out and hug you, hug Annie, and remind Bill of the miracle he is to his big sister…you have an awesome gift, a fantastic family, and an amazing story to share! Thank you!
Thank you so much for sharing your story. I can’t help but be reminded of our own struggles with our daughter, Delaney, who was lifted up and carried to Jesus after a nine month battle with 3 heart defects and massive brain trauma resulting from 22mins of CPR after a cardiac arrest when she was just shy of 1 month old. Much like you & Tom, my husband and I balanced eachother out on good and bad days, and very thankfully, our relationship has only gotten stronger. I found your story through one of your blog posts about “Just wait” and it hit home for me. I only wish we had the just waits with our daughter, we would certainly embrace all the joys along with the bad and ugly. Anyway, I know you get a lot of responses, but I had to tell you Thanks for all the fantastic things you are doing. And, no pressure, but if you wanted to learn more about our story, you can go to http://www.delaneyrosefund.blogspot.com
Hugs,
Lindsay