One Hundred Luminarios

No matter how long I live, I doubt that I will experience a Christmas Eve filled with the same magic as we experienced this week. Chip and I left the beach house late in the afternoon to achieve two goals: 1) secure a bonfire permit, and 2) pick up all of the necessities both of our families requested for an evening on the beach. We returned heavily laden with firewood, marshmallows, chocolate bars and graham crackers, and the rest of our holiday party had been wonderfully busy prepping the beach for our special evening. Tina then brought out two separate packs of lunch-sized paper bags, one of white bags and the other of traditional brown bags. Chip, Adrienne, Tina, Nathan and I spent the next half hour putting three scoops of sand into each bag, folding down the tops about an inch or two and placing them up and down the stairs that lead from our beach house down to the sand. We placed a tiny tea light candle in each and prepared for dark to create a spectacle none of us could wait to see. After Chip and Fanone treated us to their favorite Christmas Eve dinner, we stepped out into the breezy, misty evening to light our luminarios. It took a little patience and some ingenuity on the part of our resident pyros, but we finally lit all one hundred lights and stepped back to see the mystical path we'd created from our home-away-from-home down to the edge of the thundering surf of the Gulf of Mexico. Spencer set our beach bonfire ablaze, and we spent the next two hours singing Christmas carols, roasting marshmallows, making s'mores and sharing Christmas memories. The mist coming in from the gulf obscured everything beyond a few hundred yards in every direction, and since we have been some of the beach's only residents this week, we could see almost no other lights along the beach except for our one hundred luminarios and our campfire.

The beauty of Christmas Eve and our efforts to make it memorable were tinged with the sadness I still feel in my heart. Peter would have loved this, and as I sat on the steps overlooking the flickering candles and the waves crashing on the shore, I felt overwhelmed by grief for a few brief moments. Letting Peter go this Christmas has been difficult, but we are now past that difficult milestone preparing ourselves now for a handful of challenging anniversaries. Peter's birthday is one month from Sunday followed closely by the anniversary of his baptism and five weeks later by the date of his passing. I don't know how time is passing so quickly, but it is. God is helping our family make it through each new challenge on our road to healing, and even though the tears I shed on Christmas Eve felt hot and bitter, I know that that they are part of the growing, changing process I need to experience in order for me to move on. On Christmas Eve, we lit our luminarios out of hope and joy, not as a token of grief, and hope will continue to carry us through all of the sudden upheavals of emotion that lie in our path as life goes on.

Fried Chicken and Our Arrival in Florida

How many restaurants have you ever visited where the proprietor comes out and sings to you? Well, he comes out and sings at The Old Country Store! We purposefully planned the last day of trip so that we would pass through Lorman, Mississippi, the home of Mr. D and The Old Country Store where we heard we could sample the tastiest fried chicken in the country. We arrived just after 11 a.m., and the dining room staff informed us that lunch would be ready to eat in about ten minutes. It wasn't long before we were seated in the "historic" building (it actually looks about the way it did 100 years ago!) and helping ourself to an all-you-can-eat buffet with the most complete spread of southern comfort food imaginable: mac & cheese, dirty rice, black-eyed peas, collard greens, green beans, sweet potatoes, ribs, corn bread, and FRIED CHICKEN! All of it was prepared by Mr. D who came out to the dining room to sing to everyone about how his mama was the corn bread cooking queen and how she raised him to be the chicken cooking king; mama succeeded! The boys and I all agreed that the chicken was pure heaven, and although I don't feel qualified to declare it to be the best in the country, I sincerely doubt if I will ever taste its equal in my lifetime. We took some pictures with this true southern gentleman and continued our lengthy trek through Mississippi en route to Seagrove Beach and our home for the holidays.

We feel very blessed to be able spend this Christmas with our lifelong friends, the Parkinsons; they arrived safely from Connecticut yesterday afternoon after an exciting adventure getting down to sunny Florida from the snow-blasted northeast, and the party began the very moment they arrived. We've spent the past two days playing games, running on the beach, eating holiday goodies and catching up on old times, and our kids picked up where they left off back in the spring when they saw each other last. We feel the healing taking place just like we hoped, and we look forward to making some amazing memories for our entire family. The house itself is everything we imagined, and the sound of the gulf has been our bedtime lullaby for the past two nights. This will truly be a unique Christmas.

Culinary Bungee Jumping

We finalized our preparations today and embarked on our Christmas trip of healing this afternoon at precisely 12:30. Destin, Florida is our ultimate destination; however, we couldn't just drive through the Mississippi delta region without taking a little detour to experience some of the more noteworthy cuisine! For those of you who have known our family for more than just a few years, you know that it's all about the food with the Barrs, and the channel we watch almost religiously is The Food Network. Last year, we saw two shows that each featured the same two Mississippi restaurants: Doe's Eat Place in Greenville, and The Old Country Store in Lorman. Alton Brown visited both restaurants on his show "Feasting On Asphalt" in which he celebrated great American road food along the Mississippi River from Louisiana on up into Minnesota. Gourmet Magazine also ran a special on The Food Network on the restaurants that served the best iconic American food (steaks, burgers, ribs, tacos, fried chicken, etc.), and once again, both restaurants appeared on the show, taking runner-up honors in steak (Doe's Eat Place) and fried chicken (The Old Country Store). When we planned our trip to Florida, we realized that, with a little creative navigating, we could hit both of these temples of taste temptation on our drive, so we planned it all out to arrive in Greenville tonight and have dinner at Doe's to see what all of the fuss was about regarding their steaks.

We pulled into Greenville just after 7 p.m., a full thirty minutes before our reservation at Doe's, and we were able to check-in to our hotel before navigating some slightly confusing directions to our ultimate destination. Doe's Eat Place has been around since 1941, and it's plain to see that it was once a corner grocery that was transformed into its current occupation over a long period of time. We entered the restaurant through the kitchen and got a sneak peek at the joy awaiting us: steaks the size of man-hole covers sliding into the broiler, pans full of french fries sizzling on the stove, and huge vats of their specialty tamales bubbling away. The dining room looks like it hasn't been changed or updated since its first hours of business, and the floors were actually slanted slightly: definitely no-frills on the atmosphere, which was actually part of the charm of this true delta native. We received no menus, but our server was kind enough to tell us exactly what they were serving tonight, giving us a choice between several steaks that would be served family style as well as a healthy selection of accompaniments. We settle on the sirloin-for-four and a "small" t-bone since the boys sounded hungry. We also got two salads, some garlic bread, and a dozen tamales, which they serve wrapped in paper rather than corn husks. The steaks were huge! We found that we liked eating them family style since they gave us all a chance to try some from different parts of the cut, and they came with a heaping mound of their fresh-cut fries. Needless to say, we left Doe's Eat Place stuffed to the rafters and thoroughly enjoyed the unique, down home atmosphere that I doubt we could find anywhere else in the country. Tomorrow, we will head down the Mississippi River road to find Lorman, Mr. D. and his Old Country Store, and some of the best fried chicken in the country. It will probably be yet another exciting chapter in our family's culinary thrill-seeking!

A Kiss from Buck

On Thursday last week, I had the wonderful opportunity to visit my sister, Ali, at her home in Newburgh, New York. My recent business trip to New York afforded me the chance to spend my last night with her rather than at my hotel in the city, so I called her a few weeks ago and made all of the arrangements. She and her husband, Armando, graciously picked me up from the train station in Beacon right around dinner time, and they treated me to their favorite pizza as the heavy rains began falling up and down the Hudson River Valley. I can safely describe myself as an avid dog lover, and Ali has a beauty at home named Buck; he's part Rottweiler, part German Shepherd, and I have been looking forward to meeting him ever since Ali invited me to visit their home. Ali cautioned me, however, not to expect Buck to act like Scamp back in Texas. She warned that Buck is not the kind of dog you just go up to and pet; he's highly protective of Ali, and she indicated that if I just let Buck do his thing without trying to insinuate myself on him, he won't mind at all having me visit. I took that advice to heart, and when I saw Buck for the first time, I immediately had immense respect for this big boy. To picture this dog, imagine a large, muscular Rottweiler with a German Shepherd's tail. His head is easily the size of Scamp's entire body, and he moved with the speed and power around his domain. During our pleasant evening of pizza and conversation, Buck simply sat close at hand and observed; however, at one point, when Ali moved close to me to show me a picture, Armando suddenly ordered Buck to his pen upstairs. I asked if Buck had been stalking me, and Armando smiled and said, "No, but he was giving you that Buck look!" Apparently, Buck goes everywhere with Ali, and if someone he doesn't know gets too close to my sister, he goes into protect mode. I guess Armando sensed that such a transformation was underway, and he defused it before anything further developed. We spent another hour visiting before heading to bed for a lovely night's sleep listening to the torrential rain outside pounding down upon their roof and against their windows.

Armando left for work early the next morning, and while I brushed my teeth, Ali led Buck into the bathroom to have me participate in a ritual aimed at helping Buck warm up to visitors. She gave me a rawhide chew called a pig ear and had me give it to Buck while he sat at my feet looking up in utmost anticipation. He eagerly but gently took the treat from my hand and hurried off to devour it inside his pen at the opposite end of the hall from my guest room. Ali went back to her room to prepare for work while I went back to my room to pack my overnight bag in preparation for my train ride back to New York City. As I knelt down on the guest room floor stuffing laundry into my bag, I noticed movement by the door out of the corner of my eye. I looked up to see Buck entering the room alone, and he headed right for me. I didn't move, and following Ali's instructions, I just waited to see what he was going to do. He walked right up to me, put is big wet nose against my cheek and started licking me! I reached up my hand and started stroking his powerful neck and scratching him behind his ears, which lasted for just a few moments before he silently turned around and loped back out the door. I shared my little Buck moment with Ali as we sat eating breakfast, and she seemed delightedly surprised that Buck had warmed up to me so quickly. I figured that it was either my natural dog charm, or he was just tasting me to see if I'd make a good snack for later! Either way, I left my sister's home that morning with warm feelings from many sources; first and foremost, from being able to reconnect with my sister and brother-in-law for the first time in over eighteen months, and secondly, for getting a kiss from an unlikely friend.

The Little Christmas Tree

Tina is my hero when it comes to coping with negative emotions. Yesterday morning, she experienced what we call a "grief burst", an unexpected surge of emotion not tied to any particular memory or trigger and which simply needs to run its course. We've both learned that when that happens, the spouse not so intensely affected just needs to be there. Nothing needs to be said; we've both been there, and these emotional flash floods soon subside. What Tina decided to do afterward, however, is what really impressed me. While the children and me took care of miscellaneous chores and work-related items, Tina went shopping for a special project through which she funneled her grief. When she returned, she had a small artificial Christmas tree and a few dozen miniature ornaments, stickers and other assorted nick-knacks out of which we could make additional tiny ornaments. This little tree, when it was completed, would sit in the vase on Peter's grave, and each ornament represents something he loved in life. For the better part of the afternoon and during a visit to grandma's house this evening, we completed this project of love and found our grief being swallowed up in the wonderful memories of Peter we can readily associate with Christmas. The tree is now finished, decorated with soccer balls, penguins, polar bears, a camp fire complete with roasting marshmallows, presents, Santa, snowflakes, a sled with his name on it, a big heart, and a fat hippo! Peter always loved the song, "I Want a Hippopotamus for Christmas!", and we even have video of him mouthing the words last Christmas while it played in the background. There is even a little star on top of the tree, and we think it looks just like what Peter would want bringing his resting place some Christmas cheer (even though Tina swears up and down that the tree still needs a kangaroo of some kind). We will deliver the tree this afternoon, and I owe this lesson on how to channel the surging emotions related to grieving to my lovely wife. I hope I can learn how to cope with grief with as much constructive creativity as the weeks and months without Peter melt into years.

Three Trees and an Icy Swim

One of the choices Tina and I made many years ago was to take out a small life insurance policy on each of the children. I remember thinking how morbid that sounded at the time, but I can also remember thinking that should anything happen to the children, God forbid, the last thing either of us would want to worry about is paying for a funeral. I can't tell you what peace of mind that policy brought to us as we began planning for Peter's services; the cost of a child's funeral, which is generally about half the price of an adult's, can cost anywhere between six to ten thousand dollars. My heart breaks for parents who may sometimes spend years paying for the final resting place of their loved one, and I would strongly encourage any parent out there to consider purchasing at least five thousand dollars worth of insurance for each child, which can cost sometimes as little as four or five dollars per month. Should it ever be needed, the peace of mind it can bring is priceless.

Why all of this talk about insurance? Well, we retained some of the remaining money from Peter's policy once all bills were paid, and we wanted to do something for our home with that money that would be a lasting tribute to him. One of his favorite birthday presents back in January was an apple tree which we planted in our back yard next to the boys' salsa garden, so we decided to do it all over again. Tina purchased three Live Oak saplings which were delivered to our house on Friday. On Saturday morning, we spent a few hours digging holes, driving in stakes and planting the new tributes to our son which we can see every day. I love the idea of planting trees for Peter; our friend, Chandler Brown did the same thing at Walker Elementary last Spring when he planted a group of Crape Myrtles in Peter's honor as part of his Eagle Scout project. Such things last, they beautify, and they reaffirm life to all who look at them and enjoy them.

We did something else just last night that helped us think of Peter. The temperature in McKinney hasn't been unusually cold for November; nevertheless, our pool temperature has dropped into the upper fifties since overnight lows have been a little nippy, so we haven't been spending enormous amounts of time swimming in the pool this month. We are, however, looking forward to a special birthday celebration for Peter when January 28th rolls around. Since Peter loved swimming as his favorite activity and polar bears as his favorite animal, we decided that a fitting tribute to Peter on his birthday would be a polar bear swim! That's right...on January 28th, anyone who wants to come and wish Peter a happy birthday can do so while jumping off of our diving rock into the icy waters below! Since a few members of our family are, shall we say, warming up to the idea, we figured we needed some practice. We invited our friends, the Walters, over for an evening of marshmallow roasting and hot tubbing, and sure enough, everyone who wanted to spend time in the hot tub needed to take a brief dip in the pool first. The teenage boys went first, followed by the Walters' two youngest sons, Connelly and Carter. I then did my obligatory cannonball, and finally it was Tina's turn. I love that woman's style! The screaming started well before she even made it to the diving rock, but she saved the best shriek for her leap of faith. To her credit, I believe she could have given our Olympians a run for their money as she sped from one end of the pool to the other on her way to the spa! The pool temperature read fifty-eight degrees, so you can imagine what we'll be facing in two months (yikes).

A few months ago, I made a promise to myself that I would follow three more children who were battling DIPGs: Mara Adams, Gunner Gillespie and Aidan Zaugg. They are the last children we began following before Peter's passing, and they each put up courageous battles against this horrible disease. As of yesterday, however, the last of these three little warriors went home to his Heavenly Father as Aidan ended his miraculous two-and-a-half year struggle. God bless you Aidan. Rest in peace Mara and Gunner. They are just three names in a long list of beautiful young children claimed by this rare tumor in the last few years, a tumor that still perplexes and confounds doctors around the world. Now that these three have gone home, I plan on stepping back and focusing on my family, even though all of the families who have struggled or continue to struggle with DIPGs will forever be in my prayers.

Many parents make the defeat of childhood brain tumors their mission after the death of their little one. They often create a foundation in their child's name, and they dedicate their lives to making sure that their child's death means something. As strange as it may sound, I don't feel like that is my calling. I feel like the greatest good that I can do after having gone through this ordeal is offer help and insight to grieving parents. Many families break apart after their children pass away, mostly due to their inability to express their grief or reconnect with each other following the disappointment and despair of a child's death. As tragic as the child's death may be, the continuing tragedy of families torn to pieces by grief must also be addressed or else cancer's collateral damage can grow to include both parents and the child's brothers and sisters. I hope that sharing my experiences through this medium as well as ultimately telling Peter's story to a larger audience can help grief-stricken parents understand that life goes on and that it can become sweet again. We hope for that every day, and we know that it will happen to us and to anyone who seeks it.

Approaching Holidays

When we understood and accepted that Peter would ultimately die from his brain tumor, we realized that we would begin marking time differently. Many who have traveled this path before us told us that we were going to be in for a season of "firsts", and our first holidays without Peter would be difficult. Tina and I have already felt many firsts come and go, like the beginning of school and the passage of Halloween, and each one has tugged at our heartstrings. Peter wasn't a huge Thanksgiving fan since he really wasn't old enough to appreciate a turkey dinner with all of the trimmings, nor was he a huge fan of parades or football. With that in mind, I don't feel like Thanksgiving will cause our reflections on Peter's absence to be any stronger or different than any other day; however, Thanksgiving is the gateway to the Christmas Season, and I know that our Christmas celebrations this year will be much different.

Christmas of 2006 came right on the heels of Peter's diagnosis, and we felt just about anything but merry. Our hearts were torn between shock, hope and horror as we contemplated the sheer weight of what we faced. When Christmas morning dawned, our happy precocious boy had been replaced by an emotionally distant, depressed child who seemed lost in every way. No matter what we tried, we could not break through the miasma that enveloped Pete, and our hearts broke as we watched the joy of Christmas have no impact on our suffering child. That was a Christmas we vowed not to repeat, and when Christmas rolled around a year later, the spirit in our home had changed entirely.

We faced the brunt of Peter's illness in 2007, including coming to grips with the truth that he wouldn't survive the tumor. We saw, however, a powerful miracle take place as he returned to school when his tumor stabilized just before Halloween. A second stable MRI before in early December confirmed that we would indeed be celebrating a very special Christmas with Peter, and Tina vowed that we would do everything we could to make that Christmas one to remember. We decorated the house inside and out like we had never decorated before. Christmas music played non-stop on my iPod docking station (and not the annoying stuff they play on the radio, either!), and the house seemed saturated with the smells of good things baking in the kitchen every day. We truly celebrated our Savior's birth into mortality last year, and our home felt wrapped in a halo of light for those weeks between Thanksgiving and Christmas. Peter's joy and excitement that Christmas was as strong and infectious as his depression the previous year had been, and I cherish the photos and videos we have of him at every activity and traditional family event, like acting out the Nativity, or building a gingerbread house. The amazing finale to our holiday season came during our miraculous trip to Montana, made possible by the amazing generosity of someone we didn't even know. I don't think I've ever seen Peter so eager to participate in anything like he was when he went sledding and skiing during that trip, and the generosity of our hosts and the herculean efforts of my mom to make it all happen will never be forgotten.

Peter lived less than three months after our return from Montana, and watching him finally succomb to that blasted tumor was the hardest thing I believe I will ever witness. It left a void in my soul, and I feel the emptiness every day. Luckily, the Lord hasn't forgotten nor forsaken us, and I have felt peace, comfort and reassurance during those moment of excruciating loneliness, and I come through it each time with a new hope for being whole again. Now, we face the Christmas Season once more, and our family will approach it differently than we have ever have before. We know that we can neither duplicate nor exceed the kind of joy we felt last Christmas, so we are not going to try. Rather than inviting direct comparisons to what we consider the perfect Christmas, we will try something new by packing up and leaving town. We plan on spending time with some old family friends, the Parkinsons, at a beach house in Florida, and we are already busily preparing for what promises to be a fun week of new experiences. In honor of Peter, we will light as many luminarios as possible on Christmas Eve and reflect on the beauty of his short, eventful life. I look forward to just sitting on the sand in the cool of the evening, listening to the voice of the gulf telling me its secrets and watching the children play along the beach, digging holes, collecting shells and getting sand in their hair and in between their toes. We hope that by taking this trip, we will remember this Christmas more for being the first time we celebrated at the beach rather than it being the first Christmas we faced without the little man.

Thoughts on a Sunday Evening

I just got off the phone with my brother who lives in California. I miss Mike, and I wish that he lived closer to us; however, he and his lovely wife, Monique, enjoy living on the beautiful Monterey Peninsula, so I need to be content with frequent phone calls and sporadic visits. We talked a great deal about politics, the recent election, California's Proposition 8, and the current state of the world. Mike and I see eye-to-eye on pretty much everything, which I'm sure comes from how we used to always stick up for each other as kids. We moved around a great deal as children, attending a new school just about every year before we were teenagers, and we frequently found ourselves needing to make new friends. Having a brother who was also my best friend made it much easier for me to adjust as we arrived in our new surroundings. When Mike asks me how I'm doing and how Tina and the kids are coping, I know that I can be perfectly candid with him, and I thank my Father in Heaven for loved ones with whom I can have such frank and open conversations. He asked me those questions during our conversation tonight, and I was pleased to report that we're in a healthy place right now. We feel blessed and strengthened to be able to bear the burden of Peter's death, and we feel like our hearts have been softened so that none of our family members have felt overcome by bitterness or anger. We've prayed for these blessings, and God, as always, has heard our prayers. I enjoyed talking to Mike, and I need to talk to him more often just like I need to talk to my sister, Ali, more frequently; she's back in the states after an extended time overseas, and I look forward to visiting her in her new home in New York before Christmas.

Charting new territory

Welcome to my new forum. I have fully embraced this new life that God has given to me and my family, and I plan on sharing thoughts and impressions regularly; I hope that what I write is worth reading in some way. Your comments and impressions are most welcome, and I look forward to this new literary journey with you.