So...a new year is upon us and here we are in 2010. I still feel the same way I did in my last post although I will say I have finished my 3000 hours for my license and gathered my paperwork, paid my money, and await the decision of the BBS (Board of Behavioral Sciences). What are they deciding? They are deciding whether or not I have completed everything needed in order to move forward and get on to the testing faze of this pursuit. If they write back and say yeaup!...you have done everything you need to do to test...then I will set up my first of two tests that I must pass to earn my license.
That is exciting stuff and I am relieved to be here at this point. I am hopeful that I will be allowed to pass and go forward to test. I know that something like this isn't everything in the world...but it sure would mean a lot to me. So here's to crossing fingers and toes...crossing my eyes as I look at my nose...and hopefully...get to move on to the next stage.
I still feel the same way as I did in the last post...maybe even more so...but I have not moved forward musically. I did see another orthopedist and he wanted to give me the same shot in the same hand...or do surgery. Hmm....scary...
I spent half of yesterday sitting in the ICU of Stanford because my son Joshua is in there. He is very ill and they are really putting pressure on him to make a decision about having a double lung transplant. His numbers are not good and he could use prayer and lots of it. Thank you if you have already been putting in time as one of his prayer warriors.
I will go back up to see him tomorrow...I hate...absolutely hate...watching what is going on with him...it makes me sick and feels like I am powerless to help...I know that's not completely true...attitude is everything...but it is very very...very hard to watch your child suffer and deteriorate...and not be able to fix his needs...even financially...because if he does have the transplant...he and his wife will need to live within 20 minutes of the hospital and not leave because of the possibilities of and logistics of getting to the hospital once there is a donor...which brings up the fact that he is waiting on someone else to die in order for him to live...I don't know how to feel about that...I know it is a natural process and we can't do anything about his deterioration on some level...but it is still a harsh reality.
There is a wide range of things that trouble me...my daughter who also has CF...and how is she feelings watching her big brother go through this and relating to it...and wondering about her future...and her health...my four year old daughter Sarah and how she will deal with this process as it progresses. My oldest son Jake who keeps his emotions buried so that he doesn't really have to deal with how he really feels about his brother and his sister and what is going on with each of them...my wife Heather and how all this affects her, knowing that it takes a huge toll...and my own feelings which are jumbled and strong...over the top and often sudden and out of nowhere. And all of this is the short and in my face list...not mentioning my job, our financial mess, my license pursuit, my feelings about my music, my stress, other family, friends, and on trying to find it's place in my attention and I am struggling with it all. So what now?
So here we are.
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2 comments:
Hey Doc...
Your Joshua is in my thoughts and prayers... I cannot even imagine what it's like to watch a child suffer with cystic fibrosis -- it's such a crappy and unfair disease -- I know my Mom & Dad watched me deal with this disease over the years, and later my wife watched as well...
If Joshua is at a point where the docs say he's ready for transplant -- that he's in the window where he can choose transplant -- I hope he goes for it, and I hope it's wildly successful... It's not an easy decision to make for anyone -- even when you KNOW you're not going to live long in your current situation, deciding to go through transplant might not be as obvious a choice as many of our loved ones might believe... Transplant comes with it's own set of issues. More often than not, the outcome is amazing -- but there are times where transplant can make CF look like a mild cold... But, you go with the odds -- because survival rates and good outcomes are actually pretty favorable... This coming April -- I will be 10 years post double-lung transplant... And, after breathing almost 40 years with shitty, CF lungs -- breathing with "normal" lungs blows my freakin' mind every day... It's been almost 10 years, and I think about how this feels constantly... In my tiny mind, it makes all of the struggling beforehand worthwhile...
And you said something that a lot of people think about, but there are other ways to view the situation... You said, "which brings up the fact that he is waiting on someone else to die in order for him to live..." In reality -- people die every single day... In the Unites States, over 6,000 die every single day... What Joshua is waiting for, and you are waiting for, is for some compassionate person and/or some compassionate family, at a very dark time in their lives, to think of others for just moment -- to think of the lives they might save by offering to donate their organs... Their loved one has passed away, and they can do nothing more -- but they can reach out and save someone like Joshua... They can keep the darkness they feel from darkening the path of Joshua and those who love him -- and that's a good thing... You're not waiting or praying for someone to die so Joshua can live -- you're praying that when someone does die, that they or their family are given the strength and compassion, and the comfort, to offer their loved one's organs so that others, like Joshua, may live...
And, look into the details with your center -- and possibly see if there are other centers with programs in Joshua's vicinity... Some centers allow you to be further than 20 minutes away -- some permit the patient to be as much as a few hours away -- though there can be situations where they might have to pass up an offer for lungs if the patient is too far away... But, it is worthwhile looking into those details...
I received two beautiful lungs in April, 2000 -- my lungs came from a precious 17-year-old girl from Iowa named Kari... In the month before she passed away, she told her family how strongly she felt about organ donation. Twice. I'm alive because of her -- she is my hero, and I think of her throughout the day, every day. I can see her smile when I close my eyes... Your precious Joshua, and your beautiful daughter, deserve so much more in life than struggling their entire lives with crappy, cystic fibrosis lungs. I hope Joshua makes his decision, and I hope he gets whatever he needs soon...
I have a little website dedicated to my donor, and with some of our story at www.ClimbingForKari.org and I blog about organ donation at www.ReviveHope.com
You take care, Doc...
Love, Steve
Steve Ferkau
Chicago, IL
Wow, Breathin Steven. Congratulations.
Doc - I've insisted on having my driver's license show I'm an organ donor since I started driving. I don't give blood as often as I should - but I do go. We are put here as stewards, and part of stewardship could include handing on parts when we're done using them.
And meanwhile, at church, in our book of prayers by the faithful, I keep a prayer for your family and the families of organ donors.
Loving you from Colorado,
Lori xoxoxoxo (& Tom)
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