Parenting is the hardest job in the world. Keeping an objective focus, bouncing ideas off of an objective third party, and keeping it all in perspective is key to sanity – and good parenting. Having a parenting coach sounds goofy to some – it did to me. But, really being able to keep perspective and to help talk through ideas to improve your skills in one of (if not the) most important job in your life – doesn’t sound so silly when the job and the joy of parenting is put in perspective.
Let me put my money where my mouth is, and share a very personal story that led me to believe that investing in a parenting coach will result in more confidence, better parenting (which in part is from confidence), more well-rounded kids, and perspective. Here is my story:
When we got the news, we were sitting at a gas station – somewhere in West Virginia. We were on the way to Williamsburg – a week vacation that we had planned for a long time. It was hot and humid, and we had been driving for only a couple of hours on our second day of travel. The kids were all awake, had been well behaved, and they were all laughing. Henry, of course, had the loudest and deepest chortle – with a smile from ear to ear. His laughter and happiness are infectious, and really have been a medicine for all of us.
As I climbed back in the van, having gassed up, with the kids laughter in the background, Kristen was on the phone. The conversation was serious, but Kristen, as she always does, brought comfort to the caller – she was gracious and kind – knowing at some level how difficult it was for Shirley to deliver the news that afternoon. I quieted the kids down, and soon wish that I hadn’t. Quieting the laughter, in retrospect, was so wrong.
I knew Shirley; she was Henry’s neurologist’s assistant – she was to call about his biopsy results. Before Kristen got off the phone, I knew the news. I am no sleuth. Kristen talked about the team that would be assembled, she talked about scheduling, and was being given websites to browse. His biopsy confirmed the feared diagnosis. Henry has a mitochondrial disease. When Kristen pressed, Shirley specified that he had a form of the Complex 1 mitochondrial disease.
To receive the news at a gas station somewhere in West Virginia was ironic and definitely consistent with our journey. For years, we had been in search. In search for answers, a diagnosis, a treatment, a reason. And, we had seen dozens of doctors, in many hospitals, in three states all across the country. We moved, in part, to be close to the program where Henry could get the treatment. And in that program, they tell us that he has a much bigger problem. Our poor little Henry sent off again to more (and different) doctors for more tests, more procedures, more unknowns. So, after all of this, we sit at a gas station in West Virginia to be given the diagnosis. Right now, it is an answer (though not the one we wanted), that creates so many more questions. The journey continues.
When Kristen got off the phone, we did not lose our cool. I said “he has it.” Kristen nodded, and we started a movie for the kids. In our own bubble in the front of the car, with Scooby Doo muting our conversation, Kristen told me her conversation. The most I remember from those several minutes were my impression that Shirley was kind in her delivery. The type of kindness that we never wanted to have to face. And hadn’t before. She told Kristen that Henry would be a candidate for the Mitochondrial Clinic, and that we would have an appointment with the neurologist, geneticist, and a genetics counselor. She also said not to despair – that everyone responds differently and that there could be development in the field.
Those later comments took me back to Dr. DeGraw (Henry’s neurologist) comment to me when I pressed him about prognosis – if Henry had a mitochondrial disease. He told me not to research it, not to cross the bridge before we get there, that medicine is miraculous, but “to answer your question, the prognosis is not good. There is no cure, and there are no survivors so far.”
The kids engrossed with Scooby, Kristen and I used the gas station parking lot as our internet library. Both of us on our Blackberries, we went to the site that Shirley directed us to. Like with many things, Kristen was faster than I. At first, when she said “Complex 1,” I thought she said it is a “complex one” meaning difficult. So, I am slow. She grabbed my hand and said, it is neuro-degenerative and progressive. Could result in hearing and vision loss – before the mulit-system failure. The one we didn’t want to have – of course. Essentially, Henry’s cells do not have the energy necessary to have his organs do what they need to do. It is system wide, and with age, the energy drops more and more, affecting new systems in different ways, in no particular order. The disease progresses until there is not enough energy for life function. So, he will pass with this – unless our prayers are answered (and medicine comes a long way fast). The fact that several of his systems have already been affected (called early onset) is not a great sign – just from a pure time standpoint. The literature points out the obvious – the later the onset and the slower the progression, the longer the life expectancy. But, it is all very individualized. So, we are not defeated.
After our internet café parking lot picked up with traffic, we got back on the road. As tears streamed down her face, I could show no emotion. My stomach was in knots, and I’m sure that my next questions seemed like what a medical student would ask a mentor – not a father of a sick son. I asked, “Will he degenerate cognitively?” (as I can’t imagine our smart little boy in that state). Then, I asked “What about Luke?” Kristen knew the questions were almost rhetorical, and we just exchanged painful glances.
On the trip, for the first time, we both noticed (though we didn’t discuss for the week) that Henry was quite drained. He refused to walk, saying he couldn’t for a few days. The trooper was tired. Many days, he was too tired to laugh. Henry, too tired to laugh, was very painful for us. It could be emphasized because we knew, but it was what it was.
Our next discussions turned to what we have always come back to – making sure that our family is whole, happy, and complete. The goal has never changed from the start. We love our family so much, and are so lucky to have each other. We are focused on giving all of our kids the most full (but “normal” – whatever that means) life that we can. The kids are all very happy, and we plan to keep it that way. There is a bit of an ominous burden in the back of our minds – that we want to make sure we know what full is (we think it is love), and the journey ahead and the time we have is uncertain. As is whether Luke will also fall victim to the disease, or his recent symptoms (gastrointestinal, eye issues – and his hypothyroidism) are just coincidental. So, we will take it one step at a time, get Henry his treatments (whatever they may be – there are some experimental ones out there), and cherish every day.
Of course, our story is not unlike many others. Everyone has a challenge – some more difficult than others. But, keeping perspective and the eye on the ball – providing the opportunity for a full and happy life (whatever its length) to our children is the lesson here. I know that as well as anyone.
And the bottom line, our story is just the beginning. What we needed, got and continue to get, were specific ideas and ways to achieve these goals. Not just the “be happy” goal. We captured our ideas in starting a non-profit for kids like Henry – Henry’s Hope, Inc. – www.henryshope.org. That was a specific and effective strategy – that, we as a family, work on.
Good parenting coaches provide specific ideas to try out (we don’t have the answers as there aren’t right and wrong in parenting) – but you deserve someone that has experienced a lot, fouled up, got help, and can provide kind, useful, and helpful insight into the issues we all face as parents. Choosing to get the help – whether through a parenting coach or other means – is a brave and humbling act as a parent. Call today for a free consult.
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They persisted, even in the face of failure.
