Would you lie with me and just forget the world?
OPPORTUNITY
What initially seems, and sometimes feels, like a very depressing situation is actually an opportunity. Each day we are all faced with choices that lead to opportunities. What I have recently been reminded of is that not all opportunities have desirable outcomes.
I have been convinced for 21 months that Harper’s seizures are diet related. With the help of her amazing local Pediatrician and Neurologist, we had all been trying to get Harper into a Metabolic Specialist located anywhere! Finally, in December the opportunity to address Harper’s condition from a diet perspective appeared through Texas Children’s Hospital in Houston. The nutritionists that work with both the metabolic and neurology clinics took Harper’s existing diet and changed the only carbohydrate source she was consuming from goat milk to corn starch and the frequency in which the carbohydrate was given from 3 times per day to 5. The corn starch was chosen because it is the most complex carbohydrate and there is enough information to know exactly how it will break down in everyone’s digestive system.
The results were SHOCKING! Her seizures went from being 3 times per day, lasting about 2 to 3 minutes long with none during the night to 6 plus times per day, including the middle of the night, lasting from 8 to 15 minutes long. The seizures had such increased intensity that her jaw became dislocated which then caused her discomfort to the point where she no longer desired to eat. This decreased her calorie consumption and therefore her seizure frequency rose to 12 plus per day and her physical abilities rapidly declines to the point where she can no longer suck from a bottle or straw nor maintain muscle control. Whoops!
That was so not what we were expecting to happen! However, what we learned is that Harper is highly sensitive to corn and what we confirmed is that YES her seizures are impacted by her diet! Sadly, despite this turn of events that put Harper in a poor state of severe physical regression the metabolic team at this highly ranked hospital declined to address Harper’s case further, blaming her noticeable and well documented problems on the CDKL5 condition itself do to lack of published research suggesting otherwise.
The opportunity we so anxiously awaited for left us sitting in a state significantly worse than we were in before, but it didn’t leave us empty handed. It provided us with very useful information, unfortunately at the expense of Harper’s suffering.
CHOICES
The act of making a decision is what leads to opportunity. Thoughts are ideas that, once relieved, require decisions to ignore or act upon the thought. Like opportunity which does not always have desirable outcomes, choices do not always lead us in the direction one had hoped. The choice to change Harper’s diet did not lead us in the direction of better seizure control, which is disappointing to everyone. In fact it did just the opposite. However, it did provide us with the opportunity to finally speak with a metabolic specialist regarding Harper’s condition thanks to the Neurologists and Nutritionists from Texas Children’s.
An individual only has power over their own choices, and those choices not only provide various opportunities but impact others as well. The decision of the Metabolic Team at Texas Children’s Hospital in Houston to NOT take action concerning Harper’s treatment options provided a disservice to Harper and others who suffer from her medical condition. That is a choice they will have to live with making. The impact it left was severe but not unrecoverable. Their decision moved us forward in a direction that might not have otherwise been taken had they chosen to help.
We have contacted Dr Francis Jensen with Children’s Hospital of Boston to see if she would be willing to coordinate her CDKL5 seizure research efforts with a specialist interested in researching CDKL5 seizures from a metabolic perspective. She is currently encouraging her colleague with an interest in performing this study to participate in the seizure research. This means we could potentially end up with two separate projects running simultaneously off of the same, soon to be created, CDKL5 mouse model.
Belief that is not based on proof is our faith. Faith is what provides us with the ability to see negative situations from a positive perspective. Having faith does not make the ability to stay positive during negative circumstances easy. Regardless of faith you still have a choice. A choice of feeling resentment, regret, and sorrow and accepting the circumstances as final or a choice to take a step of faith and follow the path of opportunities placed before you. Opportunities that regardless of future choices may not be revealed again and opportunities that may not provide you the outcome desired but will provide useful knowledge. Faith took us to Boston to meet Dr Francis Jensen, encouraged us to start Hope4Harper’s Organization, led us to many other organizations and individuals wiling and wanting to get involved and make an impact, drew our family closer together and showed us that our family and friends are the “Angels Among Us!”
IMPACT
As for Harper, we are taking a deep a breath and starting over in our efforts to rebuild her entire bodies muscle control from relearning to swallow down to regaining leg strength. We are grasping a better understanding through our own research efforts of the necessary steps that must be taken in an effort to heal Harper. She is still not eating well and has been diagnosed with pneumonia and a double ear infection, but we have skated by the need for a tube as long as we continue to syringe feed her an adequate amount of calories that she will keep down.
Hope is what makes the path of opportunities laid before you easier to follow. Your choice to have faith and follow will make an impact. What choice will you make today, what opportunity will that choice provide and what impact will it have?