Along the way in my quest for normal, I might have missed some….

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It seems that overnight, my 15 year old twin sons, Sam and Will do not want to spend time with us.  Even when I plan a “Pizza and a Movie Night,” go to Redbox and choose a DVD they might like, they turn away.  I cajole, entice, try to persuade them to at least “try the movie” to no avail.  We end up either watching the movie without them, or missing most of it when they repeatedly get up and leave.

A few weeks ago, the four of us and our dog went to the beach for the weekend.  My sister was away and so allowed us the use of her house which is close to the beach.  We hadn’t gotten to the beach all summer and this was the weekend after Labor Day, so I was so pleased we could grab this time together.  My first 12 years of child rearing were spent living in Southampton, Long Island.  The beach was a daily event and a whole group of us met each day and raised “water rats” who we had to wrench out of the bay at the end of the day.  I am not a swimmer and yet, I took great pleasure in watching my sons and sometimes my husband, frolic and enjoy the water.  I also have some great photos of those days.  When we moved to North Carolina, the beach was two hours away, but we still managed to get there several times each summer and create more memories with all of my sons in the water non-stop.  So, imagine my dismay when we hit Oak Island Beach and Sam and Will barely dabbled in the ocean, and took to beach chairs.  Here, they spent the rest of their day, bored and miserable. “The waves aren’t big enough.  We saw some Sting Rays.  I don’t feel like swimming. What time are we leaving?  How long do we have to stay here?”  I was angry and disappointed and not a nice mommy that day.

It was First Friday evening in the town of Southport, so this sort of kept their interest, particularly when we hit a preppie type clothing store that was having a big sale on North Face summer shirts.  Everyone seemed to enjoy our sushi dinner, but I felt anxious about keeping the boys happy and entertained.  Why I took this on, who knows, but mothers do this a lot!   I convinced myself to chalk it up to a bad day at the beach and knew that the next day at Wrightsville Beach would be better.

It was a perfect blue and gold beach day and we hauled all the boogie boards, skim boards, food, etc that one hauls to the beach for a long day of pleasure.  As soon as we hit the sand, we noticed the red flag on the lifeguard stand, signaling strong undertow and dangerous swimming conditions.  Great. Now, my twins are both strong swimmers, and I knew that in previous years with my oldest sons, this would have proved to be nothing more than an exciting challenge.  My anxiety began to climb when they plopped into the beach chairs.  Then, we argued about sunscreen, which is of course, a given.  And then, I began my “Aren’t you going in the ocean?” “Maybe later,” they replied.  I knew I was in trouble.  They dabbled a bit in and out, never picked up the boogie boards and it turned into an even longer and more miserable day than the one before!  I was frustrated with them and angry with myself as I scolded myself over and over with a mantra that went something like this, “Why do you think all your boys have to be the same and do the same things?  Why do they have to enjoy the same things? After all, these boys are strong cross country runners and the older boys weren’t.  Oh, it must be because these boys are the electronic sons as opposed to the older ones who I never even allowed to play video games. That’s it!  It’s all my fault. I ruined them!  No, maybe they’re just spoiled. Is that it?  Why, why, why can’t you have a nice day anyway, without everyone enjoying the same thing? Are you codependent? Do you need a 12 step meeting? “  My mental flagellation was periodically broken by another request for an estimated departure time.  I seethed.   Eventually, we gave up and drove the two hours home with me sulking, but all seemed to settle down when we were back in our home base.

I began thinking of plans for next summer the other day.  I have a conference to attend in July in Phoenix, AZ, and I will need to commit to it fairly soon.  I started looking at maps and wondering what sort of a great family vacation we might plan around it.  When I discussed this with my husband, Shep we both realized that though we have been out West many times and our kids have too, these youngest have not been.  So, we began exploring Grand Canyon, Las Vegas, Los Angeles, and places we knew would appeal to 15 year old boys.  When I mentioned this possible trip to the boys, my enthusiasm was met with a lukewarm response of “Maybe Mom. We’d have to see what else is going on next summer.”  “Oh,” I said.  “Are they kidding?” I asked my husband through my gritted teeth.

So, here’s what I have figured out.  Despite having three living older sons, I have not experienced this before.  When our youngest son died in 1995, my oldest son was the same age that Sam and Will are now and the two others were younger.  Not knowing any better, it seemed normal to us that each of them, continued to want to do stuff with us, go on vacations, day trips, etc. well into their twenties!  In fact, they would sometimes comment, “None of my friends want to be with their parents, but I do.”  We enjoyed this time together and felt lucky that they did.  Again, it seemed normal.

Actually, it probably was not normal.  And in thinking this through I think I get it.  I would imagine that families who have been through other types of holocausts whether they have lost a family member or lost everything they owned, or had some other trauma, hold onto each other for dear life.  We are common survivors together and we share this intimate soul-searing event, that no one else can fathom. So, my sons were not ready to really separate from this bond, until a much older age in life than is typical.

The two youngest sons do not share that trauma. They were born after our family’s holocaust and although they have learned most of the details, with luck and God’s grace,  they will never know the feelings and the agony.  And so, this in fact, may be our very first go round with actual normal, adolescent behavior and separation.  And I, will have to learn to deal with normalcy.

RESURRECTION COMES TO THE NON-BELIEVERS TOO…

 

 

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As many in my inner circle know, my son, Peter has been to hell and back in a confusing and stunning journey.  After graduating suma cum laude from Harvard U, he became a successful Boston, business consultant.  He had been on the fast track his whole life, so this was the logical next step, following working at the NFL in New York for a year.  Learning to read by memorizing baseball cards and being bored in his Montessori preschool years, were just hallmarks of this kid’s smarts.  Sometimes, I think back to the most stunning of his capabilities being the year in middle school following the death of his younger brother.  So devastated was he, that we had to watch him all the time for fear he would harm himself.  We dragged him to a round of therapists, and medicated him to keep his depression manageable.  We did all this, while we ourselves could barely stand up.  The awful meds that were prescribed made Peter so sleepy that he would nod in and out of seventh grade.  And yet, he pulled straight A’s in his sleep that year.  

 

The boy with the golden touch began to crumble five years ago when he became sicker and sicker in Boston and went from doctor to doctor for a diagnosis.  Being in Boston offered him an advantage in that he had access to some of the top specialists in the country for Celiac disease, cancer, gastrointestinal diseases, arthritis, joint diseases, infectious diseases, and more.  He suffered through the most extensive and uncomfortable testing from head to toe of his body, which by now, was in constant pain.  He was fainting in the office, riddled with blinding headaches, memory loss, confusion and worst of all a drilling pain in his shins that left him convinced his legs were going to fall apart.  I will never forget the worst of his doctors, Dr. Bordeaux (no relation whatsoever to fine wine) telling Peter and then us by phone, that Peter was just depressed.  This was the supreme insult to someone in as much real pain as Peter was in and in later years, Bordeaux’s face became a target practice!

 

It took over two years for Peter to get the definitive diagnosis of Chronic Lyme disease which his body was in fact, riddled with and had three of the different bacterial infections at once!  Most unfortunately, this is the typical scenario for Lyme patients trying to find a diagnosis.  It is an unconscionable and politically riddled quagmire that has been written about and discussed from the New York Times to television talk shows.  And yet, despite the revealing documentary, “Under Our Skin” that uncovers all of the misinformation and misdiagnosis, the nightmare continues for the tortured victims of this epidemic illness.

 

So, our son, Peter was forced to move home with us in North Carolina, giving up everything he owned, including his fine apartment, beloved job, and friends in Boston.  At first he was quite ill and spent his time on the couch watching reality television alternating with doctor visits and trips to Washington DC to see the Lyme specialist there.  His pain was unrelenting and on most days he remained in his brown bathrobe.  He ordered a new mattress and became mostly bed ridden in his third floor bedroom.  We brought him food, which he could seldom eat and he kept track of his 68 meds per day on a spread sheet.  There were days I remember that I would literally curl up next to my 6 foot tall son and cradle him as we both cried.  Eventually, he had a port installed in his left arm, where he would receive massive doses of antibiotic combinations that went directly into his bloodstream. His dad became his IV nurse as I found myself, completely unable to do this part.  A sterile field was set up every few days when they changed bandages.  A baby monitor was next to our bed so we could listen for Peter’s breathing and the one night when he literally fell out of bed, knocking over everything in his way was startling enough to have put us both into cardiac arrest.  Instead, we ran upstairs, held Peter and all cried.  Truth be told, I spent many nights awake, just listening to him breathe. 

 

Eventually, Peter gave up.  That was probably the worst part.   His cool and compliant “pain doctor” in Chapel Hill prescribed pain meds on top of pain meds until his body was so completely polluted that he could no longer reason or hope.  Our home was a miserable place and Peter’s personality had changed to no surprise.  The drugs had brought us a whole different son and having other children, we could no longer tolerate his presence. So, although, it may have been the single most difficult decision we had to make, we asked him to leave in February 2012.  There was outrage and blaming with guilt like no one had ever known.  Peter laid it on us endlessly and it made it that much harder.  We loved him no less, we fought for his life no less, but we could no longer live with him.

 

Peter lived with some “friends” in Raleigh for several months.  We did not see him often, but spoke with him on the phone and worried constantly.  He had little or no will to go on and always, a professed atheist, nowhere to turn for prayer, begging, comfort, “help me please,” or support.  I always felt this made the journey so much harder.  But, it was hard for me to see the point in forever fighting a God, you were so sure did not exist.  I mean, if He could help in any teeny, tiny way, why not give it a chance?  This was not a discussable subject with Peter, so I simply refused to go there with him at some point, because there was none and it was frustrating for both of us. 

 

In October 2012, Peter was so ill that he did not get out of bed for four days.  When we spoke with him, we became very alarmed and concerned and I truly felt that he had little time left.  He was making no sense when we spoke and looked awful when we visited. I was terrified.  Having lost one child, makes me no more fearful of losing a child, then a parent spared this holocaust. But, I did in fact know, that I could not survive another loss of that magnitude.  So, my own life was on the line now too.

 

On a cool October night, Shep and I went to Peter’s apartment and rolled him out of bed and into Sbep’s red convertible.  The top was down and though it was chilly, the air usually kept Peter’s nausea at bay.  I wrapped him in blankets, looked into his dark brown eyes and said, “Come back to me, my baby.”   It was 10 pm and Peter slept for the next seven hours through the backwoods of Georgia until they arrived at a hospital there, that felt they could help Peter.  When Shep dropped him off at 5 am, he literally turned around and drove another seven hours back home. What did I do?  Well, I paced for most of those 14 hours. 

 

By now, Peter was no longer on IV antibiotics, but was on oral ones and a battalion of other meds that had been prescribed by a battalion of doctors.   One by one he was taken off of all but his thyroid medication.  And though it was the hardest thing he ever did, after a month there, he spent another six months getting well, working out, writing a book, and coming back to life.  I believe the antibiotics, anti-fungals, and some of the other meds had in fact worked, but that Peter’s body had become so toxic, there was no way to see this.  If ever there was a miracle, this was it!  It is not that I believe in miracles per se.  I don’t think that in an auto accident, for example that God comes along and allows the driver to live and the other four children/passengers to die.  I don’t think that God had any hand in Syrian children being gassed to death, nor did he participate in Nazi activities either. I don’t know why human beings are able to conjure up complete and utter evil.  But, what I do believe is this.  I feel that God is in each of us, deep in our hearts and he loves us with a love that is unknown amongst us here on earth. He has held my hand in the deepest, darkest trenches of my life.  He has loved Peter every step of every second of his journey through agony.  He sat next to him through most of it. It matters not one bit, how Peter feels about God or his existence.  Not one bit.  I do believe that God puts people and events in our path to help us find the way to goodness and redemption.  Whether or not we acknowledge these or choose them, is still up to us.  And, honestly, I don’t know what else I believe because for me, it is like a foggy day and in its lovely grayness, I can only see faintly where I am going, but I trust that I will get there.

 

For a long time, I have been trying to convince my young and lovely niece, Katie to take a trip to Europe and see the world.  She hedged and she hesitated and it took awhile but finally, she committed to going this September, 2013.  In the hospital room after my sister’s mastectomy, Katie and Peter spent a good time talking about travel.  They are cousins but really did not know each other all that well.  Peter is the consummate traveler having studied for a semester in Fiji, traveled through Africa and the Southeast as well as much of the US.  He loves travel and was becoming intrigued and helpful in the discussion of Katie’s upcoming trip.  We all worked very hard to convince Peter that he should join her for three weeks of her two month long journey.  He was resistant.  Like a trauma victim, he was filled with fears that his illness would return. “What if I get too tired?  What if the stress brings Lyme back? What if my legs start hurting?”   Katie finally said, “Think of how you will feel if you go. Think of how you will feel if you don’t go.”   I said, “Peter, you cannot live your life like this, waiting to see if you get sick again.  You may get sick again and if you do, you will know what to do this time and what not to do.  But, waiting for the possibility will surely rob you of your time of living and you are now fit and healthy.“  He finally agreed and bought his ticket to meet Katie in Rome. They would then hit Naples, The Amalfi coast, Florence, Venice, Cinque Terre, Vienna, Prague, Budapest, and Berlin. Wow. 

 

Everyday the Smart phone pictures and comments come online.  Most days, I cry from the sheer joy of seeing my beloved son in complete ecstasy.  He is still in disbelief that he survived and has gotten his life back.  He writes that he “cannot stop smiling.”  There could be no greater joy in my heart than this.  And yesterday, the pictures that came of him and of Katie on the coast of Italy on a small island someone suggested they go to called, Ischia, are worthy of pages in a magazine. The water is so representative to me of new life, of a baptism of sorts.  The arms outstretched as I have only seen them once before on the ocean in Fiji, is a posture of resurrection.  And the looking up to the skies is the complete and unbridled joy of life and sheer gratitude.  Well, you tell me that there is no God smiling down on my boy.  Because, I know there is and there is no better time to reiterate Anne Lamott’s three prayers, “Help”  Oh yeah!  “Thanks.”  Deep, deep gratitude.   “Wow.”  THIS IS WOW!  See for yourself! 

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