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Archive for the ‘Family’ Category

This week has been one of the most stressful I have experienced in quite awhile. There was one issue after another spanning the spectrum. I’m not going into details, but one particular issue stood out this week that made me stop for a moment to think. I’d like to begin with sharing this quote.

“Learning to live in
the present moment is
part of the path of joy.”
-Sarah Ban Breathnach

Something that I realized this week is that I try to approach each day with that quote in mind. Having a son with a life-threatening disease which many of it’s patients never make it to adulthood can certainly be overwhelming. You never know when things will take a turn for the worse and what could be your final day. We all live with that to some degree, but when there is a diagnosed cloud looming overhead it makes it seem more realistic. I think many that share terminal diagnosis and life-threatening diseases ignore that cloud. They fight through the pain, suffering and illness and inspire many along the way. While my son can not speak and communicate that to me directly, his actions clearly define this attitude. As a parent I have embraced that as well. I do not dwell on the fact that his life expectancy is potentially shorter. That doesn’t mean that I do not think about it from time to time. I may even shed a few tears over it during those moments. One thing my wife and I decided was we would embrace each day as it’s own and see tomorrow as something to look forward to rather than dread. We take the time to relish our time as a family. While my son has spent half his life in a hospital, we have had some of our fondest memories as a family there. This week I had to spell out the grim reality to get a medical provider to understand my point. They were neglecting to remember the fact that my son’s disease carries with it certain avoidances that have been documented with research to be particularly harmful and potentially hasten the onset of certain issues. While I understood the point the provider was trying to make in respect to the challenges this particular constraint placed, I was equally disturbed that they continued to press the issue as if I was being an overprotective and unreasonable parent. I felt as though they were attempting to sway my stance on their favor by asking me to compromise my values towards my son’s care. This should never happen, but it does when people do not take the time to remember or understand and be open-minded. Maybe by living in the present and embracing today rather than the potential we were misunderstood. The embodiment of this ideal is not meant to make it any less serious or to pretend it does not exist.  However, if I choose to take the time to expose you to the reality it is not appropriate to make me feel as though I am the one in the wrong. As I tell many of my critics, “walk a mile in my shoes. I bet you won’t make it that far.”

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Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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Gingerbread Men Running

Much of my son’s life has been about taking three steps forward and then two steps back. Well, in a very fitting fashion, he took three steps forward today, but there will be no going back with this one! This morning he took his first unassisted steps and both of us were blessed to be able to witness the joyous occasion. Ironically, during speech therapy today he was standing at a bench just looking around while we were discussing exercises to work on. We were all watching him and he just got this gleam of confidence in his eyes when suddenly he let go of the bench and took a step, then another. We saw his eyes get wide and his smile from ear to ear as he took a third step before very gracefully falling. He was so proud. You could see it on his face. Of course we were too. We knew it was coming. He has been so motivated to do this.  A little later during occupational therapy he took off again! This time going six steps while very impressively navigating around an obstacle in his path. There is no doubt that he will be running around here very soon. Look out Gingerbread Man!!

I could not be more proud of him. Today highlights and personifies his will and determination to do more. He never gives up and rarely gets frustrated. As I’ve said time and again, it is inspiring, an honor to watch and be a part of everyday.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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Being Chosen, My Honor

Having a medical complex child who has a life-threatening illness and struggles daily with pain, issues and challenges has without a doubt turned my life into a completely different direction. I have embraced the opportunity and tried to live up to the task. I have watched my son develop and overcome challenges that many said he would never reach. His spirit and courage, like most children who are chronically ill, is nothing short of inspiring […..]

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I posted two new articles today for you to read……….

Preceptor Fail is an account of how the nursing agency practically set our newest nurse, who is a new grad, for failure by not following through. It is certain to make you shake your head in amazement & disbelief.

My Son, My Hero is something I wrote while my son was less than 1 month old and still in the NICU.  He has continued to impress and inspire me as well as many others. It is amazing and touching to hear from people how much my son has changed their outlook on life and motivated them to accept more in their own lives.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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Check Out – Our Prenatal Knowledge

This was the email we sent out to our family and friends the day we learned about our son at our 20 week ultrasound……Continue Reading!

Thanks for reading my point of view

http://www.twitter.com/fatherpov

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