Life is Beautiful

 

Papa’s Big Yellow Truck

By Richard Wingard
Editor’s note. This first appeared in “Turning Wheels,” the Official Publication of the Studebaker Drivers Club (SDC) and is reprinted with the author’s permission. The following is the introduction to the story as it appeared in the November 2014 edition.
The following heart-warming story relates to the 1954 truck article appearing on the previous pages, but it is much more than a look at a 60-year old 3R11 Studebaker truck. The author, Richard Wingard, is an SDC member from Santa Ana, California.
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When our daughter Olivia was born the doctors didn’t give her much chance. In fact after Olivia had been in NICU for five weeks the “ethics” board at the hospital told us that we should take her home and “withhold nourishment.” Her taking nourishment was just one of many, many, problems she faced.
After eight years of trying unsuccessfully to have children and giving up on the notion, my wife Lorena became pregnant in the middle of a major remodel to our home.
Despite the awkward timing of my wife being pregnant while moving back into the house on concrete floors and the remodel incomplete, we were delighted to hear the news. Then at five months we found out that she may have hydrocephaly (water on the brain), which obviously alarmed us but the outcome for children born with Hydrocephaly is usually not that bad and most of the time with medical assistance can be overcome.

The day our daughter was born, I remember holding Olivia in my hands as I bathed her right after birth with the genetic specialist next to me taking her measurements and making comments about my daughter’s anomalies and I remember saying to the doctor, “I don’t know what you see doctor, but all I see is a beautiful baby girl like I’ve always dreamed of having and whom God has seen fit to give us.” Unfortunately the next day we found out she was born with a rare form of Hydrocephaly that is not “water (Cerebral Spinal Fluid) on the brain,” but rather the water filling in the void where the Cerebral Cortex had not formed. Our daughter was born virtually without a cerebral cortex and along with that the doctors told us that she was blind, deaf, would have difficulty in feeding herself and indeed might not even have any awareness of her surroundings at all.

Of course, this was devastating to us and we didn’t know what to do, but one thing we did know we could not go home and “withhold nourishment” from our daughter as the medical ethicists advised. What parent could? After five harrowing days at home “feeding” my daughter with a small vile of formula without much success, I asked my wife if the doctors had ever suggested nursing Olivia. She told me that they said it would be much too difficult for a child like Olivia to be able to take that on. That seemed to be completely illogical to me as I reasoned that if our daughter had any natural instinct to live then she would know how to nurse and indeed she did… and she did it with relish. It was like a light went on in our daughter, she had a choice to make and she made it with an exclamation point.

That was the beginning of a very long journey into the unknown with our daughter. It took us five years before we finally found out her underlying disease that caused all of her complications was a rare Metabolic disease that leaves her unable to take any nourishment from carbohydrates or protein, only that derived from fat. Typically, this condition is fatal, but our daughter has for some reason been able to beat those odds and is as healthy as she ever has been today. This has not come without a lot of hard work and blind devotion to bring our daughter out of the darkness and into the light.
As a consequence of this disease and the global neurological damage our daughter has suffered, she is considered “institutionally deemed” by the state, is wheelchair bound, tube fed, has Scoliosis and Kyphosis (curvature of the spine), hip and joint dysplasia among many other challenges. She has had fourteen operations and seventeen visits to the hospital in her now thirteen years of life with the largest surgery being a “spinal fusion” procedure that saved her life a few years ago. Her vision improves everyday as her brain continues to open up new neuro-pathways for her optical nerve, she loves music, her parents, family and her home.

She is trying very hard to walk and talk as she wants to be as much like the other kids she sees around her. Most importantly she is very happy from all the love she is surrounded with, and she expresses her love for us unconditionally every day.

When a special needs parent starts on this journey you have no idea where it will go and how you will handle it, and indeed my wife and I have been tested like never before in our lives, but the one thing I have tried to hold on to throughout all of the ordeals is to live as normal of a life as possible and incorporate our daughter into as much of that as we can. Although our daughter has profoundly changed our lives in many ways, I still do manage to pursue some of my passions in life like cycling, skiing and vintage cars. Oddly enough unlike a lot of children with challenges, my daughter enjoys the sense of speed whether it be behind my bike, in a boat or a sports car.

One of her great joys in life is to ride in “Papa’s Big Yellow Truck,” which is my 1954 ¾-ton pickup truck. It is painted in chrome yellow and used to belong to the Santa Fe Railroad for decades before I bought it from a broker who was about to take it over to Europe to sell. Of course, the “Stude” with its flat head in-line six and “three on the tree” with overdrive transmission doesn’t go particularly fast, about 60mph if I push it, but it makes a whole heck of a lot of noise and bounces around a lot, both of which my daughter just loves.

Whenever I go up to my yard to pick up some firewood for the home, I fasten her into the Recaro child seat I got especially for her size, and immediately she has a big grin from ear to ear. With a child like Olivia, you never know where life is going to take you, and how we will deal with our daughter as we age is almost too overwhelming to think about even though we have to try to prepare for that eventuality.

Someday, we still hope to resettle on some rural land we own in Cambria, California, with my Big Yellow Truck, my dog Gus in the back and Olivia in the cab with her big smile while cruising down Highway 46, not needing to go anywhere fast.

Source: NRLC News