Time for finding

Sometimes the journey to what we seek appears to have no end.   Inside Currituck Lighthouse, September, 2013.

Sometimes the journey to what we seek appears to have no end.
Inside Currituck Lighthouse, Corolla, North Carolina, September, 2013.

“When we are trapped in seeking, nothing is enough.  Everything we have mocks us; we see only what is missing, and all that is already here seems pale and unsatisfying. In Sabbath time we bless what is there for being.  The time for seeking is over; the time for finding has begun.”Wayne Muller

I’ve always thought of myself as a seeker, and I think seeking after what is good, true, and beautiful is a noble thing.  So when I read this quote, I had to give it some real thought.  It had never occurred to me that seeking might be a different task than finding, which I had always imagined was something that “happened” when you looked hard enough, or looked in the right place.

But the final sentence of this quote resonated with me.  For the past year, I have been continually seeking information, scouring Medline and other databases for advice, research abstracts, case history precedents, or any other source that might help me help Jeff to get well.  There’s nothing wrong with that, to a point, but Jeff himself has put some fairly firm boundaries on my tendency to get obsessive about it.  I have come to see the wisdom in that.

Likewise, for the past 28 years, I have been seeking one way or another to help Matt survive, heal, and flourish in the midst of the constellation of disabilities that go with his extremely rare (12 cases worldwide) genetic disorder.  While I often feel as if we’ve met with failure after failure, perhaps part of the problem has been my inability to understand that we must do more than seek in order to find; that we must be open to discovering what we didn’t realize we were looking for.

Several years ago, the world-renowned expert in autism, Dr. Gary Mesibov of UNC-Chapel Hill’s TEACCH program, along with his clinical team, conducted a two-day vocational assessment of Matt, evaluating his strengths and weaknesses in preparation for the transition from high school to community working and living.  While they did prepare an impressively detailed and accurate written portrait of Matt’s significant skills and challenges, the meeting that followed the evaluation was an unexpected gift.  After years of IEP (Individualized Education Plan) meetings at schools all over the USA, I had heard repeatedly about what Matt could NOT do, and about what we should NOT expect of his education and life opportunities. I expected a similar summary from the TEACCH staff.

Instead, Dr. Mesibov congratulated us; something I’ve rarely heard from educators. “I love kids who have autism,” he said, and you could tell he meant it.  “They are my life’s work.  But ‘pleasant’ is not a word I typically use to describe them.  Your son is a star!”

After I recovered from the surprise, I mumbled something about wishing Dr. M could be at the next IEP meeting with us, or could convince some of the vocational training providers who seemed far more dubious about Matt’s potential.  Dr. Mesibov gently suggested that we simply enjoy the person Matt had already become.  While he understood and supported our goals to help Matt improve his skills and succeed in the community, he also said, “The time has come for you to enjoy the fruit of the hard work you have been doing for more than twenty years.”

That’s easier said than done, of course.  Life since then has been anything but easy, filled with disappointments, tears and fears.  Yet I am finally beginning to understand that Dr. Mesibov was telling us that the time had come for finding.

At this point, with Jeff and Matt each having three surgeries behind them in the past year, and more scheduled in the near future, as well as a very uncertain long term prognosis, I am learning to cherish every single day.  I’ll always be a seeker; that’s just who I am.  But I am learning to be a finder, as well.

Some of us who are Christians set Sunday aside for practices often referred to as “observing the Sabbath.”  Many people of other faiths, as well as those who observe no particular faith, also set aside one day each week to rest from all our striving.  On this day, we pause and reflect on our lives, seeking (and hopefully finding) connection with what matters most.  We worship, give thanks, or simply bask in the blessings that often go unnoticed in the hectic pace of life.  I wish for you a day of refreshment each week, a time for blessing what IS, rather than focusing on what is missing.  May we all learn to find, as well as to seek!

47 Comments

  1. I cannot wait to read your 400the blog entry! The reason? This is the best one yet! In my opinion, you have “found” what you were seeking, by starting this blog.

    • Wow, Eric, that is one of the nicest compliments I’ve ever gotten about this blog. I do agree that I have found here what I was seeking in many respects, especially as regards my writing. I’m not sure why I was never willing (or maybe able) to put much energy into trying to get my novel published, but my whole reason for writing has always been connection – hence my volumes of letters, emails and now this blog. I’m so happy you liked today’s post!

      • Sheila

        Eric, before I read any farther I’ll just slip in here to agree whole heatedly with you! I am so enriched everyday by Julia, her words, the photos, the comments, your family’s personal contributions, and the shared bond. Just remarkable today! 🙂

        • Sheila, thanks so much. You’ve never met anyone in my family in person, but it seems almost as if you are one of us (I mean that in a good way :-)). I really do appreciate your kind words and your encouragement!

      • SO agree with Eric!!

        • Finders, keepers! You’re a keeper for sure. 🙂 Love you!

    • 🙂

  2. HarryS

    Most of the time I expect a quick and direct result from a certain action. But in the practicing of any spiritual program all of this seems sometimes ephemeral and it is necessary to keep practicing and patiently wait for results to come in God’s time.

    A few times I have been visiting in one of our island nations and have been perplexed because they don’t seem to be following our established time schedules and they reply, “Ah but you must realize we function on ‘island time’.

    That’s kind of the way it is on God’s time!

    • Harry, so true! Moving to Hawaii was a major adjustment for me, because the locals were not only bewildered by my rush-rush impatience, but were actually offended by it. (In Hawaii, even the network news used to start a few minutes “late” because it was, like everything else, on “island time.”) One of the most wonderful things about going to graduate school at UH was that it opened my eyes to the rich wisdom in many practices (especially as regards education) that I had previously scorned. Perhaps the hardest thing for humans to grasp is how unbound by time God is! For God, there’s no such thing as needing to hurry.

  3. Raynard

    Saturday and Sunday isn’t ‘All Sports Day” for me.( Back in the day it was bowling on ABC and “Wide World of Sports”. While it wasn’t “The thrill of Victory & and the Agony of my feet lol it wasn’t time well spent to a certain degree. The gift of memory and being able to connect it in my testimony helps me to connect to others and “be like my dogs when they stick their heads out of the windows on the van”.. Don’t get me started, I just had a flashback of”Mutual of Omaha’s Wild Kingdom where Marlin Perkins” always sent the other guy into danger , just like ‘the Lone Ranger Did with Tonto’ I digress. (daylights saving time , thank you Julia for your caring and compassion for others.( Now about that cake that splattered it was “the homing pigeon fault lol. Be blessed and encouraged and have a great day…

    • Raynard, the cake didn’t splatter! It landed perfectly intact, even the icing roses were perfect and I got to it before the squirrels did! I could rant quite a awhile about how much (mostly male) time is wasted on TV sports, so I’d better not get started. There is hardly any sight in the world I find more delightful than seeing a dog with its head out the car windows, totally enjoying the ride! Have a wonderful Lord’s Day!

  4. John M.

    Famous basketball coach John Wooden told his players not to let what they couldn’t do interfere with what they could do. The most reliable way I know of dealing with my very natural tendency toward melancholy is to heed this advice. I have been given ordinary talents and extraordinary blessings, all from the hand of a loving and gracious God that I believe delights in my using of His gifts, not in envying what He has given others. My cup runneth over!

    • John, well said and thanks for saying it here! I have always most admired those athletes who seem to compete against themselves and their own limitations, more than competing against other athletes. Even in the world of team sports, I believe it must be possible to focus on playing well more than on winning every time. If we focus on using our ordinary talents while staying thankful for our extraordinary blessings, I really believe God is able to multiply the good we are able to do in ways we can never see or imagine, like the “ripple effect” of kindness that another reader mentioned awhile back. Just imagine the difference if Jim Abbott’s parents had believed the conventional “wisdom” that a child with one hand could never become an Olympic gold-medal-winning and major league pitcher!

  5. It is natural to want to find answers and help our family heal. I can see how easy it would be to slip over the edge into ‘obsessed.’
    It’s interesting that the schools focus on what Matt can’t do, rather than celebrate what he can. Wishing you and your family much peace as you continue your journey.

    • Thanks, Denise! Schools, like most institutions, sometimes get so caught up in preserving the status quo, or protecting themselves against very real dangers, that they lose sight of their original goals. I thank God that through all the years of difficult and sometimes emotionally devastating negativity in school meetings, there have always been those dedicated teachers and therapists and other staff who see possibilities and not liabilities. These people have literally helped Matt and I to survive his school years, which were, it must be said, also filled with many joys and victories.

  6. Well said. You are always encouraging to me even though I don’t often comment. May our Lord continue to bless you and yours.

    • Thank you, Marjorie! I’m so happy to know you enjoy the blog. Your comments are always a blessing.

  7. Judy from Pennsylvania

    You offer a profoundly wise encouragement. Seeking is sometimes like laboriously carrying a 50 lb. backpack up the lighthouse stairs. Finding can be like walking back outside the lighthouse door and viewing the structure, its beacon and the sea.

    • Wow, Judy, that’s a very precise simile. So many things and experiences can only be fully appreciated from a distance. It’s easy to get “trapped inside” the labor and effort, and not see the end result. Thanks for being here!

  8. Rene

    What can I say, that you have not already, beautifully said? Thank you.

    • Thank you, Rene. I really appreciate the encouragement! I also appreciate your visits here and your comments.

  9. Michael

    Six surgeries in one year in your family. I can’t imagine. Some people inspire by what they go through while not totally disintegrating. By surviving such a nightmare you give hope to those with more trivial issues.
    By focusing on what is and not what is missing, perhaps we find the secret blessing hidden within. The prophet Jeremiah said, “I will bless you in the wilderness.”
    Todays news blip on Charles Krautheimer was also an inspiration.

    • Thank you, Mike. Jeremiah, so often called “the weeping prophet,” is also full of encouragement. Jeremiah 29:11 has been perhaps Jeff’s favorite verse in the entire Bible, even years before he got cancer. I love Krauthammer but haven’t read him for awhile. I was a great fan of his for many years before I had a clue about his physical paralysis. I suppose his giant intellect became all the stronger as a result of his physical limitations. I was not surprised to read that he was not allowed to watch TV as a child! 🙂

  10. kjyaccino

    Oh my goodness, this rings true with a loud clang (and a gentle hug). Your most insightful and convicting post to-date. Thank you, Julia. p.s. I also LOVE the photo!

    • Thanks, Kathy – the next picture I will post here that was taken inside of a lighthouse will probably be the one I took of you taking pictures (what else?) of another lighthouse – remember? I’m not sure if there’s anywhere else on earth you can get such a close-up view of one lighthouse from inside another. That photo has already been posted online years ago on Trazzler when they were first starting out, but why not use it again? 🙂 Glad you liked today’s post.

  11. Carolyn

    Julia, I haven’t written to you in awhile but I have enjoyed your blogs for the past few days. I just have been in a funk, going to another doctor tomorrow with problems with a shoulder. I’m really tired of going to doctors, but I guess they are wonderful when they get you out of pain. I didn’t know Matt had three surgeries this year.I hope he is doing well. Jeff you just hang in there , be strong and keep the faith. We are going to bet the big C. I have to go now, going to a like group meeting. Keep me inform on Jeff and Matt. You all have a great wek and hugs and love to all.

    • Oh, Carolyn, I’m so sorry for all you are going through. A couple of years ago when we were sitting at the cardiologist’s for what was supposed to be a routine appointment, after having heard YET AGAIN that he was in atrial flutter– and waiting for the electrophysiologist who always had to be called in during such situations, Matt just looked at me with uncharacteristic sadness and said “I’m so tired of all these doctors.” It just broke my heart. Like you he really appreciates them, and is usually very upbeat and sunny when he sees them, but I’m sure you understand how he feels. I honestly do believe you and Jeff will both beat the odds and we will all be together for that 5th year celebration in less than 4 years from now! Hope you have a wonderful week. Love to you and Terry.

  12. This is wonderful. Thank you. Enjoy your family. Give them my love.

    • Thank you Amy. I am glad you like it. I have been thinking of you today and wanting another tea time soon.

      • I copy Carla’s “SO agree” to say I SO agree with Julia, about Sheila!

  13. Enjoyed this insightful post, Julia. In the never ending process of seeking, we rarely bother to find what we already have. Sometimes we never get to the former and in the end we even lose the latter.
    I spend my daily ten-minute journey to school (starting at 6.30 am) devouring the majestic beauty of the November sunrises. I can only thank God for giving me the opportunity, the health and the mood to enjoy such blessings of daily life.

    • Isn’t it wonderful to start the day with such splendor? It helps to put everything in a different context. I know quite a few people who would tell you that another thing to be grateful for is having such an ideal commuting time (ten minutes). Jeff and I have never been able to stand long daily commutes to work. It feels like such a waste of time, fuel and energy. I’m happy that you have a reasonably short journey each day in which you can enjoy something so beautiful. Your joy and gratitude will touch all those you come into contact with during the day. Thanks for being here!

  14. Sheila

    Julia and Eric, I am SO flattered to even be considered for your family. Our exchanged comments, laughter, tears, MORE laughter have made this year so special to me. 🙂

    • 🙂 So glad you take our words as the compliment they are intended to be – some might think it a dubious privilege to be associated with what Daddy has often referred to (lovingly) as “this mob.” 🙂

    • 🙂

  15. Carlyle

    Dear Julia,
    Your best yet! You have reached the apex of literary clarity to say nothing of your broadened grasp of life’s reality.

    • Wow, thanks Daddy. I never know when I write these things, what is going to connect with people and what isn’t. I can remember when I was writing this it felt rather like too much personal rambling, and it’s sometimes hard to know when things that make sense to me will make any sense to anyone else. I have been surprised and pleased that so many people have said this is my best post. Although it reminds me of the time I was a young girl who thoroughly embarrassed my big sister when I greeted her friend with this remark, which I honestly intended as a compliment: “Your hair looks a lot better today than it usually does!” 🙂

  16. I’ve read this three times now. It really resonates with me in so many ways. Like you we’ve been through the IEP process many, many times (I once excused myself from a meeting because I couldn’t stop crying out of frustration and continued to sob in the storage closet till I could compose myself). Reading your stories, you’ve experienced things ten fold, with a rare genetic disorder and a spouse with advanced cancer.

    My hat is off to you, Julia. Thanks for sharing so purely and honestly.

    I don’t have a religion or faith in the traditional sense, but I’ve come to learn that you can build a community of support and have faith in that.

    • Alys, I think it’s extremely difficult — if not impossible — for anyone to imagine what these IEP meetings can be like for parents, and for the students, if they are present. Eventually we arranged to have Matt excused from all but the first 30 minutes, at his own request, because he found them so stressful (and in any case, was supposed to be in class learning during that time). Have you read Barbara Gill’s wonderful book Changed by a Child? If not, I highly recommend it. Gill is an attorney who had a son with Down Syndrome, and she states in the forward that arguing cases before the Minnesota Supreme Court was less taxing than advocating in school meetings for her son. I believe it! I uploaded a sample quote from one of her many short chapters here. As you mention, community is absolutely essential to survival, and the irony of it is that disabilities can be so isolating for families. A large part of the solace many of us find in religion or faith, is the sense of community we find at our place of worship. Building “circles of support” (as you’ve probably heard them called) is an essential part of life for those of us who face various challenges, whether educational or medical. I sometimes worry that modern life has left people with no time to build such community, but it seems to be happening online a great deal of the time, from what I can tell. Some people who are too shy (or too tired or too over-scheduled) can find advice and consolation online from others who understand the particulars of their situations. I’m grateful for that.

  17. MaryAnn

    It is NO surprise that Matt’s doctor stated: “Your son is a star!” He has been a star for me since the minute I met him. I am so proud of you for your seemingly tireless energy in the pursuit of the best for him! Your heart is so loving & giving, it encourages us to know you!
    Love, MaryAnn

    • Thank you, Mary Ann, you are a STAR to us! 🙂

  18. Lydia

    I always enjoy your photos, Julia. You have such a gift with you camera. I love to take photos, but I mostly spend time taking pictures of my family and pets. Your writing is also inspiring. Thanks so much for sharing your experiences. My son works with Middle School children with disabilities. I feel blessed that he is a good teacher. He cares for his students, is patient with them and treats them with respect. The parents love him.
    Have a wonderful day.
    Lydia

    • Hi Lydia, thanks so much for your compliments about the blog! I am so happy you enjoy it. Matt was lucky to have two wonderful middle school teachers during different years, both of whom were male. The first one was supportive of Matt in a situation where another student was abusing him, and I don’t know how we would have survived without his concern. The second one was just an amazingly creative, caring young man whom all the parents loved. He and his wife did not yet have children, and he put all of his energy into helping his students. He even helped them host a Christmas party for all the parents, as a practical life experience with the class on social skills he taught them. We who have children with special needs can be demanding and protective of our students, so anytime the parents like a teacher, that’s saying a lot! I am so glad your son is able to do so well in such a challenging and much-needed role. Thanks again for being here, and for your encouraging words!

  19. I read a number of your visitors messages and it’s comforting that you can share your experience with others who’ve struggled within the same system. I’ve not imagine the school system could be so difficult to work with until I’ve heard Alys’s, and now your, story. That must be discouraging. As you say, “count your blessings”. It would be hard not to always want to better your child’s life by enhancing Matt’s skills and furthering his eduction , I would think that is parental instinct. What would make it frustrating for me is to see all the government financial waste while other areas need so much more support.

    Maybe given your challenges this year, it’s ok to be a seeker. If you don’t advocate for your loved ones, it’s hard to get the attention you need and deserve.

    • Thank you! My goal is to continue to advocate as needed, while trying not to pursue it with such single-minded fervor that I neglect other areas of life. I’m an activist at heart so I have to be careful not to get caught up in trying to change things instead of appreciating what is already there. I remind myself often that the disability rights movement is very new, and we have come a very long ways in a short time. In fact, if Matt had been born just a decade or so earlier, he might have not been allowed onto any sort of public school campus at all. Hard to imagine now! Childhood is so short, and the window of maximum opportunity for learning is so brief, that we feel an understandable impatience. But the parents who fought hardest for children with disabilities to be allowed into the public schools, those to whom we owe so much, often felt the heartache of knowing that their own children would be grown before the laws were ever changed. Still, they continued for the benefit of those who would come after their children. We owe so much to them and I try not to lose sight of that when I feel as if what I’m doing is futile.

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