The cover photo of Songs for Smiler McGee was taken of a sunset near Boothbay Harbor, Maine. It’s a special place for our family, not only for its peacefulness and beauty, but also because an experience that started there with our son Jared (Smiler McGee) changed our lives and perspectives forever.
Let me explain.
Leading up to the summer of 2002, my wife Heidi and I were asking ourselves: Should we take up my parents on their offer to join them and the rest of our family on the coast of Maine for a week’s vacation to escape the Texas heat?
While we realized that we were extremely fortunate to even entertain this option, the challenge that we faced was considering whether it was in the best interest of Jared, who was a couple months shy of his 2nd birthday. Jared had already endured multiple surgeries and several lengthy hospital stays. He had been fed by a feeding pump since he was a month old and now needed a trach to breathe.
Every single day was a struggle. Let me emphasize that: EVERY single day was a struggle. The question was this—Was it safe to take him away from his team of medical experts, including night nurses, that we were blessed to have in Dallas?
For weeks, we wrestled with this question. Finally, even though we knew that by saying yes, we would have to lug medical equipment—suction pumps and catheters, feeding bags, special formulas, medicine, syringes—halfway across the country, we decided to do it. After all the time we had spent in hospitals, doctors’ offices and physical and occupational therapy sessions with Jared, we felt we could all use a change in scenery.
I think what ultimately convinced me was that there was this lyric from a song that kept rattling around in my head (this was also less than a year after 9/11) that went, “Maybe it’s time to live.” Staying home would mean that we were allowing Jared’s health to dictate that we could no longer travel—and that we were trapped in our house with no escape except to go to work, the grocery store, church and Jared’s endless stream of doctor’s appointments.
We decided it was time to live.
We made the trek up to Boothbay Harbor in early July. Jared seemed to love the weather immediately and we loved getting out of Texas. All of that lasted maybe one day. Then, on the 4th of July, I took Jared out for a run with me pushing him in his stroller. When we finished, Jared looked like he was turning green. We could tell he felt awful but, because he couldn’t talk, there was no way to know what was causing him discomfort.
We took him to the small emergency room in town and the doctor, while juggling burn victims from fireworks, made the determination that Jared needed to go immediately to a larger hospital—Maine Medical Center in Portland—which is about an hour drive south. That was Jared’s first ambulance ride.
I could go into great detail about the whole experience—and hope to, someday, in a book—but Jared had somehow developed a very painful bowel obstruction that required a 6-hour emergency surgery the next day, which was obviously nerve-wracking to us in a waiting room far from home. Two days later, the wound from his surgery developed an infection, and he endured another 8-hour surgery.
The recovery did not go smoothly and there were periods while we there, now staying at a Ronald McDonald House in Portland, where we felt like he wouldn’t survive—and he almost didn’t. The night before a scheduled 3rd surgery, we got a call from the hospital at 4 am (we had gone back to the Ronald McDonald House at 2 am, with plans to be back by 7) that we needed to come back quickly. We sprinted the half mile there in the dark, dreading during every step the news we were likely to get once we arrived.
Somehow he survived that night but doctors felt he was so fragile that they cancelled the surgery to try to give medicine and food a chance to work their magic. It was a very slow recovery, and Heidi and I both vowed that if Jared made it through this, we would never, ever complain again about changing a nasty diaper in the back of a car, about feeding bags, driving to appointments or any of the experiences we were going through. We decided up in Maine 2002 that every day with Jared from here on was a gift from God and that the gift would continually reveal itself along the way.
After 2 and a half weeks in Portland (and a very forgiving work situation for me at home), Jared was finally well enough to be flown back on a medical transport jet and then by ambulance to our hospital in Dallas, while we flew back on our own. And, while we thought we might be able to bring Jared home a week or so later, more serious medical issues developed—so serious that more surgeries and more days in the hospital were needed.
Some days we saw progress; others we didn’t. The nurses, the therapists, the doctors, the hospital chaplains—they were all so supportive and loving and wonderful—and they hurt for us and Jared when he wasn’t well.
Weeks in the hospital turned to months and finally, one week before Thanksgiving—yes, 4 and a half months after initially taking him to an ER on Independence Day in Maine, Jared was finally released from the hospital in Dallas. After nothing but darkness, it was quite possibly the happiest day of our lives with him. We went to the Dallas Arboretum on one of those beautiful fall afternoons when the leaves are full of color and the air is crisp and clean. Jared would not stop smiling and giggling—and we were beside ourselves with joy.
I wish everyone could feel what we felt that day just once in their lives. To go from July through mid-November without really seeing the light of day is as difficult as anything we’ve ever encountered. To be on the other side of that is an unbelievable feeling.
We had to go to Maine the next year—no matter what it took—not to tempt fate but to go back and tell the doctors and nurses that Jared survived because of them, their love and their expertise. We also wanted them to meet our happy, little guy—not the one who was knocked out from medicine and breathing machines.
We took photos of the sunset up there—lots of them. We took them with Jared and without—because every day and every sunset is worth celebrating and enjoying.
When Jared died 12 years later, we had a bookmark made to give everyone who attended with 5 lessons that we learned from our life with Smiler McGee. Those lessons are:
- Every day is a gift from God
- Love those around you unconditionally
- Smile as much as you can
- Keep all things in perspective
The backdrop we used was from a Maine sunset. And that’s why this photo had to be on the cover of Songs for Smiler McGee.