I have endeavored to include Christopher in all of our family fun activities, but up to this point, he has had a free-ride when it comes to working around the house. Like other fun activities, I think he enjoyed being included in household chores too. Of course it would have been exponentially quicker to have simply picked up the toys myself, but whether play or work, observing Christopher expand his scope of activity brings a lot of joy to me and our family.
Yesterday, Alice and I were engaging in a typical Saturday morning activity--cleaning house. I pointed out some of Ben's belongings on the floor and Abbie's on the table and asked them to pick them up and put them away. As I then perused the living room, I noticed a number of Christopher's toys scattered around in his corner of the room. Typically, either Alice or I will pick Christopher's toys up. As I moved towards Christopher's treasures, a thought suddenly came into my mind: "Christopher can pick up his messes too." I turned to Christopher and asked him to come pick up his toys. After repeating myself a couple times, he crawled over to where I was standing with a large grin on his face. I asked him to put his car on the shelf; Christopher grabbed it, engaged the siren a few times, and put the toy on the shelf. When he completed the task, he looked up at me with an even bigger smile. He picked up a ball, tambourine, and a tractor with some additional encouragement.
I have endeavored to include Christopher in all of our family fun activities, but up to this point, he has had a free-ride when it comes to working around the house. Like other fun activities, I think he enjoyed being included in household chores too. Of course it would have been exponentially quicker to have simply picked up the toys myself, but whether play or work, observing Christopher expand his scope of activity brings a lot of joy to me and our family.
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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. 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. Recently, 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. 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. 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!
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. 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. 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 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! As you watch many of the videos on Adventures With Christopher, you can hear many of Christopher's squeals of delight, and I will be very surprised if you don't feel a tingling of joyous excitement as you share his joy. |