Sunday, August 3, 2014

My Remarkable Son–Richard S. Bailey

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Chris, me, and Richard, in Amsterdam, Netherlands, 1969.

Both of my sons are truly remarkable and amazing men, but this post is about the youngest, my “bounding baby boy” Richard S. Bailey.

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Chris Bailey, 1966, Teheran, Iran

My first born, Chris Bailey, a “big … red-headed…. boy” the doctor exclaimed as he was delivering him… is an amazing man in his own right.  He got up and walked on his own at nine months and never sat back down.  He continued to walk and years later walked the entire 2,200 mile-long Appalachian Trail, and a few years after that the 2,600 mile-long Pacific Crest Trail.  He put himself through college and graduated Suma Cum Laude from the College of Jurisprudence in Baltimore Maryland.  Later he became an airline pilot, flying a puddle jumper in Alaska, and then flying for “some rich guy” in his private jet (he never told me who that was). Then he became a Dad… and determined he would be the best Dad he could and give his children a better childhood than he had had in a single parent home… and he settled down in a small town, becoming an organic gardener (he always loved to grow things) just so he could be home more of the time with his kids. 

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But this story is about his little brother Richard… I just want to make sure they both know, and the world knows, that I love and admire them both the same… and never favored one or the other.  I am sure it seemed to Chris growing up that I did favor Richard, but that is just not true.  So back to Richie’s Story.bailey_rich_095

Richard’s first passport photo.

As an infant, he would not “bounce” in my lap.  The very second he stiffened his legs to stand and hold himself up, he would just fold his legs and sit down.  He would not “bounce.”  Why?  I was puzzled.  Chris was off and running like he was born six months old.  Rich would not stand and would not bounce.  Each doctor appointment I would say, “Something is wrong with his hips!”  What is wrong with him?  He doesn’t seem to be in pain.  He just won’t stand up for more than a couple seconds.  Rich just said today (August 2, 2014) that “The field is ever changing. Can’t really piss on the docs for not knowing something no one knew about. There are evolutionary advantages to being born late.”

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Later, while Chris walked at 9 months (that is actually a photo of his first steps.. and genuine look of surprise realizing he was walking), Richard didn’t walk until 18 months and then he wouldn’t do more than just what was required. There are no photos of Rich walking as a toddler… he just didn’t do it.   Chris began to call him lazy and resent him.  I didn’t think him lazy, I just didn’t know what was wrong.  Doctors never found anything wrong with him.  They would stretch his legs out, check their length, flexibility, etc. and say, nothing is wrong.

In school, he would not participate in any sports or gym activities, unless he was forced to participate.  At home, he would avoid anything physically strenuous like lifting or carrying things leaving all the hard work for his big brother… causing even more resentment. Still I did not see him as “lazy.”  He went to live with his Dad for his high school years, and the school insisted he had to have some P.E. credits to graduate…. so he got them to agree to let him roller skate for the credit.  He loved the speed and gliding of skating… which I am assuming gave him a feeling of freedom.

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Rich’s first computer (TRS 80), and decades later a Senior Microsoft Software Engineer.

Both my sons are brainy.  Both have high I.Q.s and photographic memories (inherited from their father, not their mother), and both find learning new things to be pretty darned easy compared to my learning style.  Rich has a super brain… one made for advanced technology, which he has soaked up like he was a dry sponge.  He has never been able to learn new technology fast enough… so he has excelled in that field.

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He took up skydiving, a sport that doesn’t put a lot of stress on your hip joints unless you have a bad landing.  I guess, after thousands of jumps, that has happened a few times.  A couple of years ago he had a total hip replacement because his right hip was worn out.  Why was it worn out???  Turns out, I was right, there was something wrong with his hips, or at least the right one.  Instead of a rounded ball on his femur, he had a genetic defect in that the ball was more oval, like an egg… causing not only instability when trying to stand and walk as an infant/toddler, but also preventing him from any activity which caused him to feel the instability yet he was unable to understand or verbalize the problem/feeling.  This defect also caused the hip joint to prematurely wear out… AFTER only 44 years.

Dang!  Why didn’t any doctors take me seriously?  What if something could have been done before it wore out?  Anyway… a couple years ago he had a total hip replacement and I felt guilty somehow like it was my fault.  In May 2014, he went to Hawaii with me to celebrate my 70th birthday and to kayak my 50th state.  No better gift could anyone have ever given me… but he was walking with a cane and in excoriating pain from his hip and had a badly inflamed varicose vein in the same leg.  Every movement he made caused him great pain, except the snorkeling with the green sea turtles.  Being almost weightless in the water felt very good to him.

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Richard and I on May 16, 2014 kayaking off Maui Hawaii.

When he returned home to Washington state, he was planning to have a hip revision to correct whatever was wrong (the thought it was just the loose socket/cup).  First doctors had to clear up the infection in his right leg.  Compression stocking and antibiotics began and finally after weeks, the infection was clear enough and on 7/30/14 Rich had surgery.  It was agony waiting for the doctor to come speak to his wife and I.  Finally the doctor came out and told us there were complications. It felt like time froze. The reason he was in agony was that the hip joint capsule was under great pressure and full of puss… exploding gunk all over everyone when it was opened.  They had planned only to replace the socket or cup, but once inside learned even the very well-seated stem/ball section was infected.  The femur had to be cut open and the stem also removed. 

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All the metal was removed from the joint and a temporary plastic artificial spacer hip joint was put in and the cement used was a special one loaded with antibiotics.  This joint would not be weight-bearing.  He was not a happy camper when he woke up and learned this news.  He would now have to be on IV antibiotics for at least six weeks or more… and in three months go back under the knife to have a third (in less than three years) hip joint installed, with another 3 months of recovery.  Oh my gosh.  How much does he have to suffer???  He has endured this now for 46 years… and MOM says, enough!  I mean it was already enough that he has a hearing loss (which I also did not learn about until he was five years old)… which he has dealt with very courageously and now this.

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Me, Rich on crutches, and Tori (on IV antibiotics), July 2014.

And then there is his beautiful daughter, Victoria (Tori), born with a hole in her heart… who was hospitalized with a heart infection last month (July 2014) and now faces heart surgery this fall too.  Why do things have to happen this way?  She was released to home with IV antibiotics and while she was coming off her IV… her father was getting his IV PICC line put in.  Why is it these two beautiful people so full of life and ambition with so much to give each other, their families, and their many friends have to go through so much?  And Rhonda Bailey, you are amazing the way you are coping with all this.  Amazing.

I guess I can’t answer that, but I somehow know that both of them are going to be alright. They have a very large and loving support group of friends.  I did the “worried mother” thing and came rushing to their side (from CA to WA) even though I could not afford to do so. I panicked when I learned Tori had a heart infection.  I just needed to be with them, even though they didn’t need me here.  I really came for me (I keep telling myself that over and over again).  Now that I have seen them both, seen how very strong and healthy they are, and seen their support group in action, I know they don’t need me.  Amazing.  Within four hours of Rich’s surgery, his friends had arranged for his bed to be moved to make his covalence easier, and an online meal schedule was set up to bring him hot meals.  He is so loved by so many people and it is well-deserved. He is a very special wonderful man and son.

A writer friend of his, Jessica Bruder, thanked me for putting Richard on earth (I can’t remember exactly how she worded that).  Many of his friends want to meet me because he brags about my recent accomplishments. He is as proud of me as I am of him.  His friends tell him he is amazing.  His doctors say his pain was even greater than they realized… and justly so.  The anesthesiologist said… he was one for the books, he was a statistic now. 

This is what’s up:  

A complete exchange of a hip replacement done in two stages: A first stage consists of the complete removal of the hip replacement, cleaning of the bone, and implantation of a temporary cement spacer that will allow some hip motion and deliver antibiotics to the hip area. This is generally followed by a six week course of intravenous antibiotics. The second stage consists of the re-implantation of a definitive hip replacement (generally 6 to 8 weeks after the initial operation).

Something happened to me the day after his surgery where a feeling of peace suddenly came over me about him, and I knew, not only would he be alright, but Tori would also be alright.  I know I have many friends who are praying for their full recovery.  It breaks my heart that they have both suffered their entire lives with birth defects that have prevented them from living life to the fullest, but I know they are more then going to make up for that in the future.  I can’t imagine what that will look like for them… their lives have already been so remarkable, but it will be grand indeed.

Recovery and rehabilitation for both of them, will take time and a lot of hard work.  That’s their job.  Within a year they will both have resumed their lives and will be busy creating a future they themselves can not even begin to comprehend today.  They are going to be fine.  Just fine.

My job is to let go. Letting go is the hardest thing a parent ever has to do.  I must let go and continue to become my own best self, to stick to my fitness goals and prepare for my own long distant hike (820 mile long Arizona Trail). I honor them best by being true to my own best self.  I look forward to seeing them both again in a year… when we have all accomplished the goals we have set in front of us now… and we will all be healthier then, than we have ever been in our lives.  That’s what I see in the future for all three of us.  I love both my boys(equally) and all my grandchildren, more then they will ever know… and just want the very best health for them that is possible.  Hugs.

Very much looking forward to 2015.

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Richard and I celebrating our birthdays in Hawaii, 2014.

Back in 1965, while I was pregnant with my first child, I taped this little quotation in his baby book. I was trying to remember the words and could not. He just sent me a photo of it:

snug in a cocoon of
sleep you melt into me--- and I forget
that you are guest and not
possession. how I would like to
keep you in this circle of oneness---
but I must help
you grow, teach you
to drop my hand and walk alone.

8 comments:

  1. What an amazing story! I am so glad you have peace about them both! I am also very happy you could be there for them and for you. :) I will keep praying!

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  2. This makes me so happy Swankie. You are an awesome family! I will keep Richard and Tori both in my thoughts at candle time ....

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  3. Great story, well told. You have a family to be proud of. Best of health to all. Expect miracles.

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  4. Rachel, Katie, and Linda... thank you for your continued prayers for Richard and Tori. They mean the world to me. I can't say I am totally guilt-free walking away, again, but it is what I must do... and I will learn to accept it more and more. But thank you, each of you.

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  5. You've done your job well, Charlene, and you've taught me much about being a mother. See you on the road. :)

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  6. Best wishes for successful operations and rehabilitation for your son and granddaughter They have a good example in you of how to fight back and get healthy.

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    1. Thank you Karen and Tony. Richard is recovering slowly. In the midst of all this, his mother-in-law passed away in West Virginia and his wife has flown back there to take care of thing. And insurance company wants to total out my van... which I just learned yesterday, and now today one foot is screaming at me for some unknown reason. People keep telling me we will look back on this one day and laugh. I am looking forward to that day.

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  7. Thank you everyone for your well wishes. Richard seems to be recovering well from his second surgery and recently had fluid drawn from his hip to be tested for infection to see if he is clear for the hopefully final hip replacement. Of course all the previous tests done and cultures grown showed no bacteria. They are assuming the severe infection he had was due to mechanical failure of the socket part of the first hip, which was loose in his hip bone. I could no longer stay in the urban environment and found my desire for wilderness stronger than my desire to be there and "stand by"... so I left. Staying where you don't belong can be very unhealthy. My granddaughter, I guess, is still facing heart surgery (it was suppose to be in September) but as yet I have heard nothing. With both father and daughter on IV Picc Line antibiotics, and both looking healthy and strong, it seemed the best thing for all of us was for me to get back to my life and leave them to live there's. When I headed to WA in July I was very afraid for both of them, but my fear is gone now replaced by a feeling of peace and confidence that they will be just fine. I can do no more.

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Who is Swankie?

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Anywhere, USA, Full-Time USA traveler, United States
Visit me on https://www.facebook.com/swankie.wheels. In 2006, I was shopping for a wheelchair. By 2007, I had new knees, better health and by 2008 a kayak. In Aug 2013, I kayaked my 49th state, Alaska, at the Holgate Glacier and in May 2014, I kayaked Hawaii, my 50th state, to celebrate my 70th Birthday and the finale to the wonderful adventure of Kayaking America? Next up... Solo Hiking the Arizona Trail, 820 miles in Spring 2017. In training now for the hike.

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