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.

Friday, March 16, 2012

Its All About Perspective

Christopher was a little sick today and had a couple bouts of diarrhea. Each time that I cleaned up, he sang one of his favorite songs in his "uh, uh, uh intonation style." I could not help but chuckle on one occasion as I was cleaning up the mess that ran down his leg and got all over his clothes, he was singing the children's song, "It Shouldn't Be Hard to Think About Jesus." That was not exactly the moment that I was inclined to think about Jesus, but for Christopher, he does not let anything distract him from thinking about Jesus and choosing to be happy--not even an upset stomach and diarrhea. Christopher has taught me so much from his simple example. Today, I was reminded of the importance to think about Jesus always--whether things are going well or challenging. I am going to endeavor to be willing to think about Jesus all the time regardless of where I think things are going subjectively good or not!

To Stare or Not?

Through the years as we have raised our boy with disabilities, we frequently observe people staring at us or Christopher. Typically, when we adjust our gaze to make eye contact, the other person quickly looks away and pretends to not have been staring. While we do not take offense at someone who stares (at the way Christopher walks, squeals, or giggles), we do very much appreciate those who choose to approach us and ask questions, or simply wish us a good day. Even if we have caught someone staring, we would love them to  say 'Good Afternoon" rather than shield their eyes and walk in a different direction.

As we traveled to St. George last night, after we changed a blown-out tire on our trailer, we stopped at a Maverick in Santaquin, Utah. I topped off our Denali with gas, and then took Christopher in with the rest of the family to use the facilities. I held his right hand, and allowed him to walk. It is slower than if I simply carried him, but I believe he truly loves to walk, and it gives him a measure of freedom to choose his course or direction. As he walked, I noticed a big burly farmer watching with an ear-to-ear grin on his face that rivaled Christopher's. He did not turn away when I looked his way, but continued to smile and walked into the store.

Shortly after Christopher and I got in the store, another older, burly farmer approached and commented on what a special boy I had there. I wholeheartedly agreed and jokingly said that my boy wasn't for sale.  The farmer said, "but I need to get me one of those, he sure is special." He continued to interact with Christopher as if he had known him for years rather the seconds. Not long after the second grizzled farmer walked away, we walked by the first on our way to the facilities. He stopped, ran his hands through Christopher's hair, and commented on what a fine boy he was.

I have never spent much time in Santaquin, but if half the people are as nice as these two grizzled farmers were, I have definitely been missing out.

Sunday, March 11, 2012

Like the Lorax

Last night our family went to a movie together. We have taken Christopher to a number of movies in the past, but he has never seemed to watch a movie like he did as he watched, "The Lorax" in 3D. Being blind in his left eye, the 3D portion of the movie does not likely excite Christopher, but the bright colors, catchy jingles, and fast pace of the movie did for sure. He giggled and squealed from start to finish. As I sat next to Christopher, I could not help but see a number of parallels in the message of the Lorax as compared to the lessons Christopher exemplifies through his life. The Lorax says:

                    I am the Lorax, and I'll yell and I'll shout
                    for the fine things on earth that are on their way out!

Christopher teaches us that nice cars and nice things and perfect bodies are not necessary for happiness; rather, joy simply comes from the opportunity to live another day. Whether Christopher is surfing behind the boat or swimming in the water at Lake Powell, or at home flicking a door stop and feeling the vibration and hearing the reverberating noise, he is happy.


In light of Christopher's special circumstances, Alice and I have approached his life similar to the message of another quote by the Lorax: "It's not about what it is, it's about what it can become." Christopher's life could have been a reclusive and sedentary one controlling our family dynamic where he is helped from bed each day, fed three meals, taken to the bathroom every two hours, and put to bed until the same agenda began again the next day; we were not content to let Christopher's special needs dictate our life. We strive each and every day to treat Christopher similar to our other two children, and engage in the same family activities that we would even if Christopher was not physically and mentally challenged. As you can see from the videos posted on AdventuresWithChristopher.com, we engage in many activities that most would not think possible with a little boy who does not walk and does not talk, and we are happy.

Finally, the Lorax says:

                    Unless someone like you cares a whole awful lot,
                    nothing is going to get better. It's not.

Like the Lorax, Christopher naturally shares a message to the all those within his sphere of influence that one can choose to be happy regardless of his or her circumstances in life.

Wednesday, March 7, 2012

The Thrill of the Squeal

Last week, Alice and I went on a Caribbean cruise. We had a wonderful time basking in the sun and snorkeling in the blue ocean waters while it was snowing back home in Utah. As exciting as our vacation was, we both were ecstatic to return home and be reunited with our children. I believe all three of our children were equally happy to have their parents home. Interestingly, Christopher's inability to communicate with words leads to a heightened ability to communicate his emotions. When we returned and saw Christopher, he kissed us over and over. However, in my opinion, one of his most power means of communicating exquisite joy is his "squeal."

Christopher squeals when he is engaging in an activity that brings him great joy. His squeal is filled with emotion that clearly communicates his pleasure. His squeal pierces the souls of those who hear and infuses an electric ray of hope and happiness.

When I came home from work on the first night after we returned from our vacation, Alice was feeding Christopher at the dining room table. As soon as I voiced my greeting, Christopher let out one of his most joyous squeals and wore a smile from ear to ear. I interrupted his dinner, hugged him, and praised the Lord for the blessing of having such a special child in our home. Christopher is a happiness machine spreading pure joy to all those within his influence. I am so lucky to be around him every day!

Saturday, February 25, 2012

The Accelerator

video

When we travel to St. George or to Lake Powell, we usually stop at a truck stop in Beaver, Utah. Christopher's favorite part of the stop is drying his hands. Instead of paper towels, the bathrooms are equipped with a high speed hand drying machine called an Accelerator. It is like the old hot air hand drying machines on steroids. I like this video because it not only shows Christopher enjoying the machine while drying his hands, but shows him standing and choosing the manner of his play.

Monday, February 20, 2012

Bed Time

As Christopher is maturing, he is able to communicate his desires better and better. Regardless of whether we are at our home or another's, Christopher has an uncanny ability to find dishwashers, dryers, and doorstops. He frequently will come and grab Alice's or my hand, stand up, and walk to his desired destination. He will then take our hand to the on-off control of the machines indicating he wants it on, or to the door stop so we can flick it while he laughs and giggles. With the dishwasher, dryer or also the washing machine, Christopher puts his ear to the machine, feels the vibrations and listens to the stimulating noises--sometimes for hours. After the machines have run multiple times, I tend to decline Christopher's further requests. Christopher will often then go to Alice and grab her hand usually with the same result. Christopher is one determined little boy, and does not like to take "no" for an answer.

This weekend, we went on a 4-wheeler trip as a family south of St. George, Utah. Christopher and I road all around the trails on my machine, Alice and Abbie on hers, and Ben road his. My brother and his daughter Cori also came with us. It was a great afternoon. In the evening, we were hanging out in our condo, and my best friend since I was around 4 years old, Paul, came over. Christopher knows a softy when he sees one. Christopher approached with the smile on his face he wears when he wants someone to help him have some fun. He passed right by me on the couch, grabbed Paul's hand and lead him to the washer and dryer. Not wanting to disappoint Christopher, Paul solicited Alice's help to start a new load. The last load had been washed multiple times already. After Christopher enjoyed the washer for about 30 minutes, he returned to the living room, grabbed Paul's hand again, and went for another walk. I expected him to go to one of the machines for another load. Instead, Christopher walked to his bedroom, climbed up in bed, and took Paul's hand to his covers to tuck him in.

I think Paul truly felt privileged that Christopher chose Paul to help with Christopher's desires and needs that night. One of the great privileges of having a child with special needs is the opportunity serve him every day. We are so blessed that Christopher has the ability to clearly express, in his own way, his gratitude for the service that he requires to meet his needs each day. Christopher seems to have an uncanny ability to involve others in his day-to-day care that brings them similar joy and satisfaction as we experience every day.

Saturday, February 18, 2012

Yellow Waterfalls

As we traveled to St. George for President's Day weekend last night, I was reminded of a funny experience on this same route at the end of last summer. We were traveling home from our favorite vacation spot, Lake  Powell. Christopher loves the water, and seeks out any source of water for play. Even when we are at church, he likes to stop at the drinking fountain as we pass, push the button, and play in the stream of water. When he is in the bath tub, he likes to put his hand under the faucet as the water comes out--sometimes, he pushes his hand up against the faucet and sprays water all over the bathroom.

Christopher is getting pretty good at walking with support. As we travel, I frequently take him to the bathroom. Often times, he is not the only one who needs to use the facilities. When he is done, I typically have him hold onto my waist behind me while I do my business. On this one occasion, I was following our normal routine. As I was half done, I suddenly noticed a hand come from behind blocking the stream. You can imagine my surprise. We both washed up really well. I have since learned to taken extra precautions to avoid his zeal for playing in streams of water to catch me by surprise.

Thursday, February 16, 2012

Introduction to My Book

Here is a link to the introduction to the book I am working on about Raising Christopher and what I have learned about happiness from him.

http://adventureswithchristopher.weebly.com/my-book.html

Wednesday, February 15, 2012

I Love You Dad

Since Christopher was born and was tenuously hanging on to life during his five months in the newborn intensive care unit, I felt an overwhelming desire to communicate to him how much I love him. Throughout the nearly 12 years of his miraculous life, I have had an increasingly strong wish for him to reciprocate and say, "Daddy, I love you."  I love hearing my other two children, Ben and Abbie, express their love for me. With Christopher, I had accepted his smiling, laughing, and giggling when we played or otherwise interacted as expressions of his love. Recently, Christopher surprised me again. A couple weeks ago, I was taking him "potty" before putting him to bed. I sat him down on the potty, and started waiting. While Christopher sat and looked at me, he started to sing the children's primary song, "Love One Another" which is about Jesus's love for his children and expectation that his children will also love one another. Christopher sang in his typical fashion by singing "uh", "uh", "uh" to the tune of the song. He sang through the song twice as I thought of the words I know so well: "As I have loved you, love one another. This new commandment, love one another. By this shall men know, ye are my disciples, if ye have love, one to another." It is not often I have spiritual moments in the bathroom. However, on this evening, my bosom burned as I felt the tender mercies of Jesus Christ as he allowed Christopher to communicate with me in a new way--that he loved me. 

The Great Escape

I have been contemplating blogging about Christopher's activities for a long time, and have not taken the time to do so. On Sunday, February 5, 2012, I had an experience with Christopher that I can't help but share. I can laugh about it now, but it was not very funny at the time. 

Our church service had just ended. My wife, Alice, our ward choir director, was on the stand, and I was seated in the wheel chair bench at the back of the chapel with our kids Abbie and Ben seated by my side on the bench, and Christopher parked in his chair next to us. As people began to exit the chapel, Ben told me he was going to his Sunday School class. Abbie, in a panic, said, "Dad, I can't find my other shoe." I looked on the floor, and did not see it. I bent down, and looked under the benche, and worked my way to the middle, and found it on one side of the bench center support. As I victoriously presented Abbie with her missing shoe, I noticed Christopher was not in his parking spot.

I quickly scanned the chapel, and did not see him anywhere. I did not think he could have wheeled out of the chapel so quickly on his own, and thought that Ben must have taken him to Primary. I picked up Abbie's coloring book and coat from the bench, sent her off to her class, and went to find Benjamin and Christopher. They were not in the foyer near the west doors where we usually enter and exit. I walked down the hall and checked Christopher's class room. Some of his class mates were running around the room, but Christopher was not there. I began to feel a little anxious at this point. I quickly walked through the hall to the children's primary room where Christopher loves to listen to the music. He was not there. 

I continued around the hall in our church checking the bathroom as I passed to see if Ben took him there. No sign of him. I went back to the chapel to see if I had missed him in the mass of people. I wondered if he was up on the stand--he likes to wheel up the ramp and play the piano when he can. He was not there. I then nearly ran to Ben's classroom, and found Ben sitting on his chair leaning back against the wall oblivious to the panic welling up within me. I could not imagine that Christopher could have made it outside of the church. We have heavy, double doors blocking the way outside. I resolved to make one more quick pass around the hall and then continue my search outside if I didn't find him. I was now pondering recruiting some help. In a very, very brisk walk, I zigged and zagged around people in the hall and made my way around our church again. I approached the east outside doors, I saw our former Bishop wheeling Christopher down the hall. He informed me that he was outside after our sacrament meeting. He saw Christopher wheeling himself down the sidewalk on the east side of our church. Christopher was joyously screaming. Bishop Holman saw Christopher turn the corner as he intersected the sidewalk along the road. Not seeing any of our family around, Bishop Holman started his pursuit. He saw Christopher appear to stop as he came to the point where the sidewalk crosses the entrance from the street to the church parking lot. With the path clear, Christopher proceeded to propel his wheelchair up the sidewalk, past the corner house to the "S" shaped hill that climbs out of our neighborhood valley.  Christopher was then caught and returned to the confines of our church, and to his father's delinquent care.

Now that Christopher is back safe, I can laugh about his adventure. His ability to accomplish that which he sets his mind to never ceases to amaze me.