Monday, September 24, 2012

Never Too Busy For Dad

On Saturday of this past weekend, my son, Ben, and I had planned on going to the BYU Raqueteer Day tennis tournament with the BYU tennis team together. Unfortunately, his school homecoming activities got in the way, and I went alone. I had a great time, but wished my son could have been there with me. On the way home, I called and spoke with my daughter, Abbie. I invited her to play tennis with me. She informed me that she was waiting for a friend to call her back so they could play. I suggested that we could go play tennis until she heard back from the friend. She replied, "It's okay. I'm good."

I arrived home soon thereafter, and Christopher greeted me with his typical squeal and grabbed my hand to lead me to what he wanted to do together. Before long, he took me to the garage. He chose the Corvette over the Jeep today. We streaked down the freeway with the windows open and he laughed, giggled, squealed and constantly changed the music as usual. I enjoyed my time with my boy. Today, I recognized another blessing that Christopher brings to my life. He is never too busy to spend time with Dad.

Friday, August 10, 2012

Just A Normal Kid

Last week our family enjoyed another vacation to Lake Powell. Two families, who had not spent time around Christopher, joined us. After watching Christopher swim with the other boys and girls and surf and go down the slide, one of the parents surprisingly commented to me, "Christopher is just a normal kid." I said yes he is. He loves to play and have fun just like the others, and he frequently chooses to disobey just like other kids, and he has his personal preferences just like other kids. Fortunately, all went well this trip, and there was no life flight ending like the last time. 

Returning to work after a wonderful trip to Lake Powell is not easy, but I managed to make it through this week. Shortly after I arrived home from work this evening, Christopher came to me and grabbed my hand. He does that most every day. He typically either takes me to the computer, to the park across the street, or to the Corvette for a ride. When we go for a ride in the Corvette, after I get him buckled in and sit down behind the wheel, he always takes my hand to the stereo to turn some music on. I usually plug in my phone and play some of my tunes that I think he will like too. 

Tonight, the direction of the Corvette appeared to be his destination of choice. I can rarely tell him "no" after he lets me know what he wants. When he grabs my hand, he invariably gets a big smile on his face like he is about to steal me away for an awesome adventure. I always make him work for the trip by holding one hand and forcing him to balance himself and walk to where we are going. Before going to the garage tonight, he stopped to grab his iPad which still had music playing from the micro speaker in the top. I chuckled as I imagined what must have been going through his mind: "This time, Dad, were going to listen to MY MUSIC." He walked grasping my hand with his right hand and clinging to his IPad with his left. After we got in the Corvette and he immediately took my hand to his iPad signaling that he wanted it plugged in to the car stereo. I complied. And so we drove up Hobble Creek Canyon in the dark rocking out to mostly Christmas music with the windows down, the wind whistling by, and Christopher giggling with satisfaction for getting his way, again.

Saturday, July 14, 2012

Potty Moment Perspectives

Last night, I took Christopher to the potty in our bathroom in our house (facts that will become significant as you read further), and as I was wiping his bottom, I suddenly had an overwhelming feeling of gratitude for the opportunity to be caring for him in this matter.

Two night earlier, we were enjoying our favorite family vacation on a houseboat at Lake Powell with three other families. The adults went into town for dinner to celebrate the anniversary of one of the couples, and the kids remained on our boat which was secured in the slip. My wife and I returned shortly after 11:00. Christopher was asleep in our room. As I was getting ready for bed, I noticed Christopher kneeling on his bed. I got him another bottle which he was not interested in. I took him to the bathroom, and he had a large bowel movement. Thinking I had addressed the problem, I walked him back to bed. A couple minutes later, my wife and I heard gurgling noises. I checked on him, and his body was completely limp. His eyes were open but non-responsive. We recognized his symptoms as a seizure. He had had one prior seizure 5 years earlier almost to the day. At that time, we were home, and received state of the art medical attention at Utah Valley Regional Medical Center.

On this occasion, we raced to the small hospital in Page, Arizona. It was after midnight. They were not particularly equipped to care for a 12 year old child with cerebral palsy suffering from a seizure but were very caring and diligent in their efforts to help him. They gave him two doses of Ativan to stop the seizure, and Christopher's respiration rate decreased to almost zero. It was a bone-chilling scary time watching the medical professionals in Page perform CPR on my son (without chest compressions). I remained relatively calm believing that all would be alright and endeavoring to keep my perspective positive. Christopher was intubated and started on a ventilator. As I watched tears roll down his cheeks, my heart exploded with emotion--not because I thought he was going to die, but because I was so saddened that he was having to endure such trauma. Only 6 hours earlier, he was enjoying surfing, swimming and tubing at the lake he loves. Now, unable to even utter a cry with the breathing tube down his throat, he could only release tears from his eyes to express his fear and discomfort. He must have been so scared.

Two hours later, he and I  were life-flighted on a fixed wing aircraft to Primary Children's Hospital in Salt Lake City. Upon arrival there, he was almost instantly extubated, and after sleeping most of the day, awoke in the evening and started getting back to himself, and we brought him home yesterday morning.  He quickly resumed playing with his favorite toys and making his contagiously happy giggles and grins.

From the beginning of this event in Page until last night, I was in a melancholy state. Suddenly, as I cleaned him up on the potty, I snapped out of it and felt the rush of gratitude to be blessed with such a special child as part of our family and life.

Monday, May 21, 2012

Christopher's Freedom


            Numerous world and civil wars have been fought over the right to self-determination and independence.  With the millions of lives that have been sacrificed for freedom of movement, I believe it is fair to say that the desire to be free is part of the fabric of the human soul. I think it is easy for most people to assume that a child like Christopher, who cannot walk, talk, eat or dress himself on his own, does not crave independence like the rest of the human race because they have never experienced it. However, Christopher’s innate craving for the ability to choose his course of conduct is demonstrated with his love for the water. In the water he can walk, he can swim, he can float, he can dive, he can be free, and he definitely loves to be free as you can plainly see!



Saturday, May 12, 2012

Christopher Can Read

For a couple years now, I have been working to educate the world that the abilities of children with cerebral palsy should not be underestimated. As you can see from my other posts and the adventures of my son, Christopher, at AdventuresWithChristopher.com, I believe in him and his ability to do hard things. This morning, I attended a groundbreaking ceremony with my two boys. Ben sat in a chair to my left, and Christopher sat in his wheelchair to my right. I loved it. After the ceremony,  a beautiful young lady named Jennifer wheeled up next to us in a motorized wheelchair and started asking questions about Christopher. She spoke in a halting pattern consistent with many people with cerebral palsy. We discussed the fact that she was attending Brigham Young University majoring in math, and desires to be a teacher. She was obviously very smart.

As we discussed Christopher, while he was playing his various games and listening to music on his IPAD, she noticed how good he is at navigating through the various apps and songs. I proudly bragged about how well Christopher can use his IPAD and choose his favorite songs to play. She queried, "Can he read?" I instantly responded, "No."

After hearing my quick response, the tone of her labored voice became a little firm, as she chastised, "How do you know he cannot read?" I was taken back by her kind rebuke. I have prided myself throughout Christopher's life in my belief in his ability to do anything he sets his mind to--sometimes with some appropriate accommodations. Jennifer continued her inquest and said, "If he can choose his favorite songs day after day, don't you think he can read?"  I sat there with the spring sunshine warming my skin from the outside and some embarrassment warming my body from the inside. After a few moments of thought, I concluded that Christopher can in fact read. Perhaps he does not read books like many of us, but he does recognize words, titles, and symbols that he is exposed to in his day-to-day life.

I am grateful to Jennifer for helping me correct my thinking error this morning when I wrongfully understated his abilities. Next time you are faced with a question of "Can you do this?" or "Can he/she do that?" remember that we are all children of our Heavenly Father with infinite potential.

Tuesday, March 27, 2012

If You Chance To Meet A Frown

While raising a child that does not talk and only knows about two signs, Alice and I frequently find ourselves wising that we knew what Christopher was thinking. As I have written in some other posts, Christopher frequently sings and expresses himself by voicing "uh, uh, uh" sounds with various intonations. The bathroom seems to be one of his favorite places to sing. Water is one of his favorite activities. This evening while I was giving him a bath in the bathroom, he began singing. After a few seconds, I recognized the tune: "If You Chance to Meet a Frown." I do not believe I have ever heard him sing this song before, nor have I heard this song sung in his presence. However, he has an IPAD (thanks to his Grandma), and one of the APPS allows him to select numerous children's songs and play them. Christopher has his favorites that he will play frequently, and others, he will only play a few beats before he selects another. He evidently has listened to "If You Chance to Meet a Frown" long enough to learn its melody, and chose that song to sing while enjoying one of his favorite activities. The notion, as expressed in the song, of encouraging happiness by getting rid of frowns is so consistent with Christopher's personality and the positive influence he has on people. I am confident that there are numerous people who have had the courage to get rid of frowns because of Christopher's influence. I have first hand experience.

After Christopher finished singing the song once, I pulled out my phone and waited for him to sing again. With a little coaxing, I was able to get the song on video although it wasn't as good as the first time. Here it is:

video

Saturday, March 24, 2012

Big House Small House

Our family has been blessed and we are fortunate to be able to afford a small condominium in St. George, Utah where we particularly enjoy vacationing during the cold winters in Springville. During our three trips to St. George over the past three months, my wife, Alice, and I have noticed some interesting things regarding our family's interaction with each other. Our home in Springville is 6,000 square feet, and our condo is 1,100 square feet. In our condo, we find ourselves in the same room with our children much more often, and as a result, have much more opportunity to positively interact with them. We find ourselves playing more games together or even viewing television programs of common interest more often. In our big house with multiple televisions, our family frequently becomes divided as one or more family members choose to watch different programming in separate rooms. We also noticed that with the much shorter distances from bedrooms to kitchens, to bathrooms, etc., the time it takes to get our family ready for church on Sunday is considerably less in the condo, and again, we interact more in the process.

Of course, there are things about our big house that we enjoy, but when we spend time together as a family in our small house, I find myself wishing that life was simpler. During my childhood, there were far fewer societal expectations of children and parents, and considerably more opportunities for entire families to engage in activities of common interest. With softball, baseball, basketball, tennis, piano, gymnastics, horse riding therapy, and all of the other activities our children engage in, there is simply not enough time for as much family interaction as there should be. The solution seems simple, right? You just need to reduce the number of activities that kids are involved in. However, the simple solution is easier said than done. When children see their friends engaging in various extracurricular activities, they often want to do so themselves, and frequently are saddened if they cannot. While I do not believe it is wise for a parent to allow their children to participate in one or more activities just because the Jones's kids are doing so, I also do not believe it healthy to set children up to not develop some skill and talents in activities that their friends are doing. I also see considerable value in facilitating children in striving to develop skills and working to improve them. It just all takes time and inevitably results in a trade-off of time that could be spent together as a family.

With the numerous trade-offs of time, there is some appeal to raising children in a small house because of the opportunity to maximize the family free time by turning it into family together time. We previously made choices and built a bigger house which we do love, and are well into the process of raising our kids. But if I had a "do-over," I may seriously consider raising my children in a small house.