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It has been a few weeks since I have posted, but it has been unavoidable. I hope that I am comprehensible tonight. My reason for returning tonight is a 12 year old little boy, who shares the same rare disease as my son is at home tonight with his family in Hospice. With only 3,000 patients worldwide it is devestating when any of them pass. This little boy though is special. He has touched so many with his heart. One of the most thoughtful and selfless of anyone I’ve ever met. Because my son is unique in the eyes of the doctors and researchers because of his anamolies and issues it has been difficult to find anyone elase with this disease similar to him. This little boy, Nicholas was close. He too has had many of the same issues growing up. His Mom comments to me all the time how seeing and hearing things about my son always brings back memories of when Nicholas was growing up. He became a beacon. An older child with this dreadful disease that we could envision our son being. All the things he was able to do that at the moment seem like a fantasy to us. Still it provided hope for what I envisioned my son’s future to be like. Having a quality of life.

Now this beacon is in his last days, maybe hours. His Fanconi Anemia caused an aggresive form of Leukemia with no treatment options available because of a type of lung infection colonization that could not withstand the extreme stress and toll on the body of a Bone Marrow Transplant. This little boy has fought so hard and overcome so many odds for so long and now he lays waiting to be called from this earth. Seems so unfair to have to fight and suffer like that. While I have spent time at my son’s bedside on several occassions uncertain if he would survive, knowing that agony and pain makes it unfathomable to consider KNOWING your child will take his last breathe soon. My heart is heavy for this family. Why do children have to suffer and die? I have quite literally held my son for most of the day. Thankfully, at jsut 18 lbs despite being 2 1/2 years old has its advantages. Especially for times like these. Living with the burden that you are expected to outlive your child is very difficult. While you try to focus on the moment and the positive the thought still remians in the back of the mind. I wrote about that in an earlier post about making tomorrow something to look forward to rather than dread. Days like today however make that task very difficult to achieve. May God grant Nicholas a few more special moments with his family and embrace the family with peace during this very difficult period. I leave you with a story that was shared with me today about facing death.

A sick man turned to his doctor as he was preparing to leave the examination room and said,  ‘Doctor, I am afraid to die. Tell me what lies on the other side.

Very quietly, the doctor said, ‘I don’t know.  ‘You don’t know?  You’re, a Christian man, and don’t know what’s on the other side?’

The doctor was holding the handle of the door. On the other side came a sound of scratching and whining, and as he opened the door, a dog sprang into the room and leaped on him with an eager show of gladness.

Turning to the patient, the doctor said, ‘Did you notice my dog?  He’s never been in this room before.  He didn’t know what was inside.  He knew nothing except that his master was here, and when the door opened, he sprang in without fear.

I know little of what is on the other side of death, but I do know one thing…
I know my Master is there and that is enough.

I wish that children did not have to suffer with disease, sickness, pain, and death. Parents should never have to watch their child die. Please join me as I pray for this child and his family and for ALL families faced with this burden.

Thanks for reading my point of view(with a heavy heart),

http://www.twitter.com/fatherpov

Posted with WordPress for BlackBerry.

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As a parent you are an advocate for your child. As a parent to a complex medical needs, or special needs child your advocacy is crucial, especially when they are very young and can not communicate. That is the most frightening time. You know that the decisions that you make will change and shape your child’s future. Why wouldn’t you want as much information as possible before making such life altering decisions. Any doctor who is offended by the notion that you would like another opinion is more than likely insecure with their own abilities. That is of course just my opinion, but having had so many doctors in my son’s very brief life, I have found that the really strong and knowledgeable doctors encourage the second opinion before it had even crossed my mind. More often than not, their outlook ends up the correct. It has also been my experience that the few doctors that have bared resentment end up being close, but not necessarily on target. My son’s tracheostomy is a great example of another look and the ultimate prognosis[…]

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

Vote4Hope.

Personifying a Paradox

I apologize for the lack of blogging the past week. It has been a stressful & busy week. Tonight I will provide you with a little reflective childhood humor.

When I was growing up I thought I knew everything! I even had a logical answer for the age old question parents always ask their children. “If your friends jumped off a bridge would you?” My response, “yes, because they must know something I don’t !”

That my friends is the personification of a paradox

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

Posted with WordPress for BlackBerry.

I knew this week was going to be busy, but it turned out to be insane. I promise I’m not abandoning everyone and am very grateful for all that read. The past few weeks have just been so intense with the appointments and meetings.  I do not know what I was thinking when I scheduled these things. It must have been how much can I cram into a week.

I am a little frustrated about my son’s hearing right now. I know I haven’t written much about it yet, it is a touchy subject for me due to the way it has been treated, nonchalantly. This week however, brought on new concerns that rub me the wrong way. This week during our Aural Rehab Therapy she brought up in question the settings for his BAHA. She wants us to set-up an appointment with the audiologist that is now doing the BAHA cases. Specifically she wants him to test my son in the booth and address that the settings for this are indeed the right ones. I became quite upset over this. They are now suggesting something we brought up multiple times to multiple people and were always dismissed as that not being a potential problem. Now it is? The inconsistency is annoying me to the core. The initial audiologist that did his settings was very surly about our questioning if the settings were correct when there was no response.  She even put my son’s speech therapist in her place when she approached her telling her she needed to learn her role and stick to it.THE NERVE of that woman! Thankfully she is gone, but it possible now that her attitude toward my son and her lack of listening to concern maybe at the fore-front of a serious issue. If the settings indeed are incorrect, and have been this whole time, she would be responsible for delaying my son’s progress by 6 more months. Not to mention it took 18 months to even get aided in the first place. Sometimes I feel as though we attract all the riff-raff  in our realm. We will have to see where this takes us, but it is really striking a nerve with me at the moment. So is it a BAHA settings problem or a Central Hearing loss as they suspect? We will see soon I hope. Hope everyone has a safe and happy Labor Day Weekend.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

Three Steps Forward

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

There is an old saying, “You do not really know someone until you have lived with them.” Well in a sense our nurses, when we have them, are here 8 hours a day 5 days a week. We have two that are working with my son now and they both have a habit that is just kind of annoying to me. More of a pet peeve. This isn’t a rant about skills and quite honestly is going to sound very odd coming from a man. “Is it that hard to put the toilet lid down?” There I said it and I’m sure you are laughing hysterically now. We have had many nurses over the past few years and we have never had this issue. Oddly I am experiencing it with two simultaneously. It is a conspiracy! Now to clarify I am not talking about the seat, which many men are guilty of leaving up. No, I’m referring to the lid to the toilet. Now this is probably a quirky thing for me and my wife, but we always close the lid. My wife has trained me well, so there is hope for those who are trying!

When you go into someone’s home, at least I am, more conscious of how I handle and leave things. They are not mine. I treat other people’s property with respect. Yes, that includes their toilet in my case, I leave it as I found it. Now as a guest it is possible to forget and just do what you do at home, but you would think that after several weeks of lifting the lid to use the bathroom each time it might click. The other bizarre behavior is no putting toilet paper on the holder. I know this is getting odder by the minute isn’t it. I tested to see how long it would go. After 2 1/2 rolls I finally placed the 1/2 roll on the holder. I wonder if they noticed? Probably as much as they noticed my following them and closing the lid. Mind you, we have 4 bathrooms in our house, one of which is exclusively used by his nurses because it is by his room. This is why I know it is them and not some secret test by my wife. Okay, now I’m being silly. I just find it interesting that these things happen and they just got me to thinking. That in turn was the inception of the idea and creative spark that is this post.  I do not get out much, but that is evident now more than ever I think.

Ironically, I was thinking about this today as I went about doing the housework while we actually had a nurse present and I began to also notice that one of them is constantly leaving lights on. Finally today, she used the microwave for her lunch.  I watched her remove her food and walk away without closing the door. I was shocked. So for kicks I left it open. When she was done eating she returned to the kitchen and moved the door out of her way, but did not close it, to keep it from hitting her in the head. I suppose I should note that the microwave hangs under the cabinet over the stove. When open though as soon as you turn the corner to the kitchen it is in your face, poor design! Again, nothing serious but more humor. It got me to wondering? Does her microwave at home stay open when not in use? Does she leave all the lights on in her house all day? Is she every man’s dream woman because he won’t have to worry about putting the toilet seat down? Just food for thought, but it is interesting the little things you notice about individuals when they are in your house for long periods of time. Hope this brightens someone’s day or provides a much needed laugh to ease the stress of the day.

I hope you enjoyed my mindless muse,

http://www.twitter.com/fatherpov

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