Thursday, January 28, 2021

Eric - A memorial essay to a brother of mystery

         


 

The pastor looked at us expectantly waiting for a reply… “How would you describe Eric?” 

Mom and I both stared back at him across the table. No immediate words came to either of us and we hoped the other would find a way to explain who Eric was. It was a hard question with no easy answers. But why? Why was it so hard to describe this person who on the outside seemed so simple and straight forward but really was so complex. We only knew the Eric he wanted us to know. And that’s the way he liked it. 


Eric was born in the mid 60s during a time of social unrest and questionable fashion. His childhood was easy up until a point, living as the only child to a middle school teacher and a medical technologist in a smallish Kansas town. They lived on a country dirt road away from the typical childhood neighborhoods with bikes and pick up basketball games. He enjoyed this isolation though. He was a quiet kid who didn’t crave constant human interaction. He enjoyed playing by himself as a child and was often solitary in his room. At the age of 5 he became ill and was frequently hospitalized with pneumonia and eventually diagnosed with asthma. But this wasn’t your garden variety asthma, it was pretty severe and required specialists and multiple medications to keep it under control. This made him miss a lot of school those first few years of elementary school and probably affected this initial bonds with kids in his class. Again he found he was happy alone and never complained. 


When he was 7 ½ I came along. At first he might have been excited for the little sister. He even had the privilege of naming me. I was supposed to be Elizabeth but he couldn’t pronounce it. Kelli was a popular name in the 70s and Eric had a Kelly as a classmate that he liked. That was the name he wanted so that’s what I became. Mom and Dad changed the spelling in order to differentiate me from other Kelly’s and to give it that feminine twist. But the newness and excitement of a little sister soon wore off and he realized that he preferred being alone versus having to now devote his playtime to another person. 


That’s not to say we didn’t play together. I remember  this early days of matchbox cars and racetracks set up all over the house. GI Joes and Jeep’s and helicopters on adventure after adventure. And his army men and football players...I loved all his toys. But as I grew older so did he. Once I introduced Barbie to Joe, Eric’s playing days were over. 


We would be home alone together those long, blissful summer days while mom and dad worked. I remember standing at his closed bedroom door (Anna at Elsa’s door asking - Do you Want To Build a Snowman - bring tears to my eyes) begging him to play with  me like he used to. One day he did agree to play…”Cops and robbers?” He asked. “Yes, yes” was my giddy reply. 


Ten minutes later he had captured me and tied me to a chair, retreating once again to his room. Winning the game and laughing under his breath. He had outsmarted me. 


I was the annoying little precocious sister who just craved his attention. If there could be a total opposite to his personality it was mine. I loved people and companionship. I wanted and craved playmates. I was curious and nosy and always really knew what he was up to behind those closed doors. Music, reading, thinking, sleeping...he was content in his isolation. I was not. 


I found neighborhood playmates and would disappear for entire days. Eric was supposed to be watching me but he was absorbed in his own life. I was independent and on my own to find my own entertainment. 


The bus that picked us up for school was the bus for the country, farm kids and was full of children grades kindergarten through 12th grade. That meant Eric and I rode the same bus all the way up until he had his own car (then he got to drive me to school). It was on the bus that I saw another side of him. He HAD friends! And A LOT of them. When I was the littlest kid on the bus he was in middle school and would sit at the back with the high schoolers. Some of these kids were trouble makers and there was one time Eric was suspended from the bus along with them for being disruptive, writing on seats, who knows what else. These were also the kids that helped him get his first fake ID at 13 years old and that introduced him to drinking and partying and the social scene. This is what also led to me discovering empty beer cans hidden in the vents of his room and in his toybox. Again remember I was the nosy one? I was the one that always had some kind of instinct with what was going on with him. This is what led to fights with our parents. I remember one day sitting down to dinner and hearing the sound of his suitcase rattling and announced to mom and dad, Eric is running away. Dad stared at me and ran to his room and found that he had cut a hole in his screen, pushed his suitcase out and was ready to head across the front lawn to where someone was waiting for him. He did not make it far! 


That social side of Eric was one that he didn’t share with us. We saw the quiet, respectful and sweet good-natured kid that he was. That was also the side that his teachers saw. He was a good student. Always very quiet and kind to everyone, got good grades. But he liked his social scene. As he aged through high school he loved heavy-metal rock concerts like Led Zepplin, Lynard Skynard, Pink Floyd... that’s where he spent his money. He drove 1976 Monte Carlo with a big white stripe down the side blasting that heavy metal music when he would drive me to school. The passenger door wouldn’t close easily and he would scream at me every day when he would drop me off. “SLAM HARD!” Me the little frizzy haired 10 year old would try my best but to no avail. He would grumble and groan and have to get out and walk around closing it for me. That car was very recognizable in town. Which was good and bad. His friends always knew where he was but so did the cops! He eventually traded it in for a 1984 Pontiac Firebird. Not as recognized but still cool. He was a kid of the 80s! Feathered hair, concert T-shirts and big belt buckles. 


We took a road trip to California in 1983 the year before his senior year of high school. I was 10 years old. I loved every minute of that trip. I love the family time. He and I would sit in the backseat together and I would pester him. Often he would call out, “make her stop touching me! Tell her to leave me alone!” I would giggle to myself and just keep it up. He would put on his big heavy yellow headphones, put his pillow over his face and sink into the door. Dad would play Johnny Cash and one of my favorites, “The Mississippi Squirrel Revival” and the three of us would sing at the top of our lungs while Eric pulled the pillow tighter over his head. but I remember in that trip the souvenir he wanted the most was a Navajo handmade belt buckle. We found the perfect one in a roadside stand in New Mexico. And one of his favorite pictures of him smiling ear to ear was holding that belt buckle along side a man from the Navajo nation who created it. He wore that thing every day. It was rare to get a smile in a picture so this is one that we will all cherish.


I also remember the days at dinner table when I would chatter on endlessly about my day at school and he would glower at me and say does she ever shut up? Then mom and dad would ask him Eric how was your day? “Fine“ was the simple answer. But I remember his favorite meals. He loved fondue night, dipping the meat in the sizzling oil. That was a meal he would never miss. Mom eventually handed down her fondue pot to him once he had his own place.. He loved grilling steaks And baked potatoes. He never missed watching a Chiefs game or a Royals game or a KU basketball game with Dad and then later with Alex. 


His senior year of high school was marred again with illness. His annoying pesky little sister brought home the chickenpox to him. He never got the chickenpox when he was in elementary school because he had been in the hospital with pneumonia when it went around his classroom. So lucky him he got it as a senior in high school. And he got it bad! He ended up missing six weeks of his senior year because the chickenpox then developed into mononucleosis and he was so sick. I felt terrible. I also remember him having to make a few phone calls when he got mono because of girls he had potentially infected. I eavesdropped and thought this was great! Again quiet Eric with that we know nothing about his friends or his social life had girlfriends! Who knew? 


I remember a time that we went to visit my grandmother in Washington, Kansas and left Eric home alone. We came home and I immediately knew something was off. My parents were oblivious. But I pulled back the covers to my bed and found crushed chips. I ran out and reported immediately, “Eric had a party! There’s chips in my bed!” Sure enough. With further investigation we found out that he had a rip roaring party while we were gone that he mostly successfully cleaned up after,  but unfortunately in his cleaning he did not realize someone was eating chips in my bed. I looked back and I have to apologize. I’m sorry Eric that I wasn’t a cooler little sister that didn’t tattle on you.


Off to college he went where he had a very large group of friends that we never really knew. We would occasionally hear stories about his adventures. Along the way he obtained the nickname Dude...Everyone that would see him that was friends with him would shout Dude! and high 5 him. His family was left to wonder what did he do to get this nickname and why is it so epic? He would come home for holidays answer minimal questions and be quiet and head back to school. He had two different personalities. Two different lives. In five years he graduated with 2 degrees one in business and one in political science. After college he moved back home for a while and I remember him bringing girls to the house when he thought no one would be around. But he never really told us about his girlfriends. Until Joni at least.


Eric was working for AT&T.. He was a customer service rep but again he didn’t really talk much about his job. But he met Joni during this time as she was working for the rival Sprint. He told us about her. We knew this was different. They got married. And a few years later had little Alex. They had a cute little family. They had good times and bad times as everyone does. His daily drinks became an issue after he had been diagnosed with prostate cancer and was in the hospital in Arizona. That’s when the tides shifted for him. Soon after that hospitalization he and Joni did split. But that’s not my story to tell. He lived on his own and was a weekend dad to Alex. But no matter what he loved that kid. He was a great dad. They enjoyed their Mystery Science Theater DVDs and their boardgames. Alex can tell many more memories that we just will never know. 


During these years after the divorce, he for the first time became active on Facebook. This provided some insight into how his usually quiet mind worked. He was funny, intelligent and very informed about what was going on in the world. Always tending to be on the conservative side of things he didn’t let that bias sway him and could always see things for what they were. He would be the first call out a conservative for saying something stupid. Oh how he loved posting some of Trump’s off the wall statements. Then he would be accused of being a liberal and I could hear him laughing to himself. He loved The Onion and sarcasm And especially loved it when people tried to argue with him after these posts. I could hear him chuckling at how stupid they sounded. He was always sharing articles of ridiculous crimes and extremely crazy behavior of criminals.


One of my favorite quotes he shared was “Learn to be okay with people not knowing your side of the story. You have nothing to prove to anyone.” Fits him perfectly. And then there was, “People are not shaking hands because of coronavirus. I’m not shaking hands because everyone is out of toilet paper.” I love scrolling through his Facebook page. His voice, his humor, his thoughts are still there. 


I admired my brother. I admired the mystery surrounding who he was. I always craved to know him better, to know what was going on in that head. But we knew what he wanted us to know. And he lived his life the way he wanted to with no apologies and no wish to prove anything to anyone. He was simple. He was complex. So when Pastor Tim asked “Who was Eric?”

This is who he was. He was admired by his little sister. The sister who is sorry for being annoying and turning him in. Who wishes they had more time in their older years to share and reminisce. Who will miss him being there...a presence in her life as the guy who would always keep her guessing. He was a loving, kind, caring dad who would put his son first before anyone. Who passed down his love of learning and understanding the world as around them with an air of intelligence and humor. Alex gets it. Alex too is quiet like his dad. Probably smarter than you or I, with no apologies and no desire to prove anything. 


Eric you will be missed. You were loved and respected and admired more than you know. I’m sorry I didn’t say that sooner. And I am truly sorry for not being cool…




Sunday, September 1, 2019

Living with Chronic Illness




My heart goes out to all people who live with a chronic, debilitating illness day after day. Those illnesses that keep them from being able to enjoy life as the rest of us who take our health for granted do. And those of us granted with the graces of good health need to learn to have a bit of compassion for those who endure pain and disability day after day.

Shawn has an illness called Cyclic Vomiting Syndrome (CVS). Sometimes I think the diagnosis is just a symptom of something underlying that has yet to be discovered. And unfortunately that leads to thousands of appointments and tests to try to determine what might be causing it. Just in the past 2 months he has seen his primary twice, a rheumatologist, cardiologist a few times, hematologist, psychiatrist twice, and chiropractor about 10 times. They all order tests and new meds to try. And each appointment, each test, each result leads to more appointments and more time and stress. But never any concrete answers. Just more questions. The blood work is always not right. The tests always come back positive for something.  New questions, new meds, new diagnoses. But nothing concrete with concrete treatment that will help him. Just when we think we are figuring things out we end up back at square one. He takes a handful of pills every night and half the time he can barely choke them down. One says he has an iron overload called Hemachromatosis that is attacking his organs. Another says he might have a rare adrenal tumor based on his elevated metanephrines. What are they doing about it? More tests, more appointments or here. . ."try this med and come back in 6 months." This week the psychiatrist (who has never heard of CVS) decided to take him off the one and only stomach med that has helped somewhat and put him on an anti-depressant instead. "Try this" he said. And viola. . .the next day...  he is in the worse episode ever.

CVS has to be one of the worst chronic illnesses someone can have and has to be one of the most harshly judged. Imagine having the worst stomach virus of your life or intense food poisoning. Now imaging having that bug everyday for 10 days straight. And just when it starts to pass and you start to feel better you have the side effects of being sick for 10 days, dislocated and fractured ribs from intense vomiting, extreme pain whenever you sit from the constant diarrhea. Weakness from not eating much of anything for 10 days. Now imagine trying to function normally with employers, friends, family and having them grow annoyed and irritated with you for your seeming irresponsibility or unreliability. But you continue to try to put on your best face as if nothing is wrong and you feel great. Which leads to more judgment because - "he certainly didn't seem sick when I talked to him." Or "It must all be in his head." Or I love this one, "He should take better care of himself."

Then there are the moments when you are episode free for a few days or weeks at a time and you grow optimistic that you have turned a corner with the illness and you have somehow found a formula or medication that is working. You carefully follow whatever seems to be working and you gently step through each day thinking, "Maybe I can lead a functional life. Maybe I can start to make some real income. Maybe I can have a real future with my girlfriend."

This is the time when Shawn took the brave step of starting his own business. We purchased the necessary supplies, advertised on Facebook. Booked several jobs that would get him through the summer. Things were looking up! He was able to do a couple of small jobs and got paid. Although there were a few bumps in the road - it still seemed possible and manageable. Then he booked a big job and a few days in. .  .Wham! Hit with a major episode. And when he is in an episode he does everything he can to fight ("Fight, fight fight" is a frequent text message back and forth between us). He does as much as he can to work, but even at the job he can only work 20 or 30 minutes at a time before he is hit with an attack. Again - imagine your worst stomach bug and then making yourself go to work and work through it. Why does he do it? To make the money to support himself and his son of course, but more than that to not disappoint the customer. To try to remain reliable and to maintain his reputation. He tried his best to finish this job and he was determined. He can sit and imagine exactly what needs to be done and knows that he is the most talented to do it right. And he tries to convince his body that it is going to get better so he can get it done. But the body has it's own ideas.

We reached out to the customer and explained the situation. They had not paid him a deposit so it wasn't as if he was taking the money and not completing the work. And he was communicating daily about what was going on. He kept trying to increase the time frame and at first they were understanding about the illness. I even reached out as I knew them from town and offered the alternative to pay for what was done and hire someone else to finish because it was truly unpredictable when he would be sick and when not. But they kept him on - until they didn't. And then they didn't hesitate to lay into him about promises made, About the amount of excessive time spent on prep (if the prep isn't done right the paint isn't going to last. Anyone that comes in and slaps paint on quickly is not doing the job correctly. He honestly does know what he's doing and if not sick the job would have been done perfectly and had lasted for years and years). But they were frustrated and I get that (so are we!). He had put many hours of work in and bought his own supplies - many of which were not anticipated because of the amount of extra work that cropped up as he went. But this illness does something to your confidence as well because people feel like they can criticize you more openly for some reason and discredit your professional expertise. And instead of arguing he tends to just accept the criticism and it sinks deep into his soul. . .leaves him despondent and hopeless that he can ever do this.

But the thing that bothers me the most, is they tried to call him out on taking a day trip, based on seeing posts on my Facebook that we had spend a day on Nantucket together for my birthday. Because I guess if someone feels well enough to go to Nantucket then they must not really be sick? This was a cruel, heartless thing to say. Instead of a "thumbs up" for putting the illness behind him for one day to try to live life a little and to celebrate. To try to not think about the disease for just one day and try to make some memories. Instead of saying "Good for you" they chose to chastise him. And did he feel good in Nantucket? No. He slept on the boat all the way there. We parked him on a bench when we wanted to walk a far distance. He visited just about every public restroom there was. He slept next to me on the beach, holding hands with me. Compassion please. Stop judging.

Judging someone based on what they post on Facebook isn't fair. Most people focus on the positive parts of their life to post. Think of it as a photo album. You go on vacation and take pictures in front of majestic things and everyone has a smile. Do you take pictures when the kids are cranky and hungry? Of when you and your spouse are fighting over directions? Of when the luggage gets lost? No. Why? Because the smiling faces are the memories you want to focus on and remember. Facebook for most is no different. These are the moments to remember and cherish. Don't think of the poster as lying or being untruthful and trying to make their life look golden. If you are close enough to them then you know the real story behind the pictures. Just like I am not going to post about Shawn's illness on Facebook. But if you know me and know us. ..then you know the truth.

If it had been a cancer patient who took a tropical vacation after undergoing their horrible treatment there would have been 500 likes on their Facebook post. There would have been Go Fund Me pages set up and meals made and delivered. Not one person would have said, "Oh he must not really be sick if he can go to the Caribbean." Not one. Why? Because cancer is socially acceptable as awful. Chronic, unexplained illnesses are not.

And please don't think I have any resentment or hard feelings for cancer. I have lost many (too many) family members to cancer. I have many close friends and family members who have fought it and won. I have made many meals, and contributed to many Go Fund Me's for acquaintances who have had to battle this horrible illness. But what I want to hit home is there are so many other people out there that deal with illnesses that there is NO end and no cure. It just goes on and on, day after day, no end in sight. They deserve your compassion and understanding as well.

Yesterday I was riding with my daughter to move her into college and Shawn was following in my car. I was talking to a friend on the phone when Shawn called in on the other line and I said I needed to take the call in case he was sick and needed to pull over. And my friend said, "Oh you are still dealing with that?" There was a pause on my end. "Um, yes. It's chronic. We will always be dealing with it."

And sure enough he did need to pull over. We pulled in next to him and he barely made it, opening the car door and puking on the ground. And this happened repeatedly throughout the rest of the day. After another hour of driving he couldn't do it anymore and we switched spots. He became passenger in Melanie's car (her first time driving such a long distance in the mountains with no cell phone reception wasn't going to be done solo in case we got separated). I drove and led them and he slept, thankfully Melanie didn't need him. She stayed with me and managed the mountains like a pro.

The rest of the day he slept in the back seat of my car with the windows down while Melanie and I moved her in. We went along with the day as needed, but my mind wasn't far from him and his needs. I would check on him frequently and find him sweating and shaking in the back seat, vomit on the ground all around the car. At the end of the day I asked if he wanted to come see the apartment and he did. He dragged himself out, put on a brave, albeit pale face, and went in and took a quick look, met the roommates, used the bathroom and then gave me a pleading look to leave. We were supposed to stop halfway home to visit with friend who had invited us to stay over and then attend their party the next day. But along the way with him still vomiting and looking like death he pulled the cord. He texted them and said we couldn't make it. We came straight home and he went to bed and hasn't moved since. I have checked on him frequently and he is breathing. Still sweating. Still shaking. Vomiting less but hasn't stopped. I check because at some point he will hit the level of dehydration that we can't make up for at home and he will need to go to the hospital. Not there yet. But getting close if it doesn't pass soon.

I write this with tears in my eyes. Tears for the grief of living with this illness. I'm not the one vomiting and sick to the point I can't function. But I am watching someone I love very much go through this and even though I do everything I can to help him. THERE IS NOTHING I CAN DO. Nothing. And that feels terrible. Helpless. I am someone who has always been able to step in and fix a situation. Somehow help to make someone's life better and more functional. And even though I have put him on the track to all the medical experts I can find (and we are waiting for an appointment at Mass General with a CVS expert), he is only getting worse. Not better. No matter what I do. And there is a grief and sense of loss as well. Loss for the life we should be living together. The dreams we have of traveling to Ireland, getting married someday, fixing up this house so that we can sell and someday buy our own cute little house with a big backyard for the dogs to run and play. Shoot I just want to be able to buy kayaks someday and spend a day on the peaceful water, just the two of us. We got hints of that early on in our relationship and I want that back. I want him back.  And therefore I will not stop fighting for him and and with him. He will feel better and we will have that life we want. I won't give up because his life depends on it.

And if you see us out living life then applaud him. Give him a thumb's up. Don't assume he must be fine now. He's just trying to enjoy the small, disease free moments and live a normal life. Those are the moments that give fuel to the desire to stay on this earth and not give up.

Update - as I was editing this post I heard moving around upstairs. He comes down with a little more color in his cheeks. I ask, "were you able to keep some water down?" He says yes he had a bottle and it has stayed down. The worst of this one is passed. No hospital. . .this time. He says to me, "Is it pajama day? Because since I've gotten up, knowing there was no Labor Day parties for us today, I spent the morning cleaning, paying bills, writing this and not getting dressed. I say, "Why yes. . .it is pajama day and I reserved the Elton John movie from Redbox." His face lights up. That's it. . .that's all he needs today. Rest, movies, pajamas and unconditional love.


Friday, July 19, 2019

Self Actualization

Psychology 101 - Maslow's Hierarchy of Needs is a concept that I often refer back to in order to see how myself or those around me are handling life's challenges. As a refresher the Hierarchy is based on a pyramid. The bottom tier is your basic needs - food, shelter, clothing. Those who are really struggling just to survive exist primarily in the bottom rung - those who are homeless or have significant mental or medical illness, elderly, developmental delays stay right around here. Their daily life focus is just to exist and survive each day. The next step is being able to make sure their safety needs are met. This includes financial needs. Needing to have bills paid, money management, security for the future. These bottom two rungs are our basic needs to survive. Once we have achieved that successfully and can advance, we worry about meeting out psychological needs - friendships, family. relationships with others, feeling a connection to others. Next up are our accomplishments - being able to succeed at work and in our communities - achieving a certain social status and acceptance. And finally full self-actualization - having complete balance in all the lower levels and being able to realize your own full potential. These people seem to have it all together. They are stable in their work and home lives, stable financially and can go out and share their gifts with the world through volunteerism, activism, pursue goals to achieve more life experience.

So where do you think you fall in this Hierarchy? This conversation came up one time when I was on a date with someone I had been seeing for awhile in between my divorce and meeting Shawn. He asked me where I fell on the spectrum and I was honest. Having just gone through a divorce and dealing with an emotionally difficult teenager at home I thought I functioned around level 3 most of the time. I could see the disappointment on his face. He thought he was fully self-actualized. He saw himself as balanced and able to give back to the world. From an outsider perspective I felt he was trying to "prove" he was self-actualized when he really did not have the psychological needs fully met yet. He had a lot of difficulty managing his day to day conflicts with his family but because he volunteered once a year at a fundraiser his cousin organized, he thought that made him fully self-actualized and giving back to the world. Well, I didn't think he was being fully honest with himself.

I will say there are time I have operated in all of the different tiers. I had full self- actualization at one time in my life. At that time I was a Girl Scout leader, Sunday School teacher, I was able to write 9 novels, maintain my blog, make photo albums of my girls yearly to keep track of their growth, development, all of our memories. I was a loving wife, a good mom. We were financially secure.  Did we have difficulties? Sure but for the most part we were living the dream. So what happened?

Life. Life happened.

I remember the day things started to change. It was 2010. My dad had died the previous year and I had grief from that, but was still able to function pretty highly. Maybe I had slipped down on the hierarchy  (I haven't written another novel since he died) for awhile but for the most part was building my way back up. Tom and I were planning a much needed get away to Jamaica and his parents were in town to watch the girls while we were gone. But that trip to Jamaica never happened. Dean - Tom's step-dad - died suddenly while mowing our yard. The girls and Beach Grammy - Tom's mom - found him in the yard. I was the one who did CPR on him, but it was too late. I held the girls together and helped Janet survive the ordeal. I managed all the arrangements, supported Tom through it (who had been on his way to Jamaica already). It was the first time in my life I felt an anxiety attack coming on- the day of Dean's funeral in North Carolina - where I would be face to face with his family. I didn't want to be in the spotlight or have to talk about the circumstances around his death. But as anxiety usually goes - the thought of is usually worse than the reality and I got through it with no major issues.

Then Janet got sick. Less than 2 years later, I would find myself moving to Florida for the summer to take care of her in the end stages of her illness. I took time off from my job.took the girls with me and helped take care of her in her final days.  Then after she passed I helped arrange the celebration of life and worked on getting her house in order to be eventually rented out.

We were all very sad with the loss of these three people in just a few short years. But we were strong. The girls were strong. What I didn't realize at the time, despite his outward appearance as managing the details and expertly handling the financials of the estates, Tom was NOT strong. He did not take time to grieve for the deaths. Instead he threw himself full time into doing what he was good at. Managing. He had not dealt with his emotional needs. He just tried to stay fully self-actualized without taking care of his more basic needs. And secretly he was following a dangerous path of self-destructive behavior. He hid this from everyone for awhile, but it was becoming more evident as our marriage started to disintegrate. He was pulling away from our relationship and becoming more and more unhappy with me, not understanding that we all were grieving in our own ways. But he didn't want to talk about it. He didn't want to address it. He just became more disoriented and confused until finally we split. I knew there was a mental component to his distraction and unhappiness, but you couldn't tell him anything at that time. He was convinced getting out of the marriage would be what would make him happy again. I prayed to God to send him a lightning bolt to make him realize the path he was on was self destructive and he needed his family to help him through instead of pushing us away. I tried to get him to go to church or counseling or to watch certain movies with me that addressed a lot of what he was going through. He did do counseling, but wasn't fully honest with the therapist with what was truly happening in his life, so it was pointless.

Fast forward a few years and that lightning bolt did strike him. He was arrested for solicitation of a minor. His obsession, addiction to on line pornography caught up to him and he was caught talking to someone who said they were 14 years old when in actuality it was a police officer trapping him into a sting operation. So that "pretend" self-actualization came crashing down around him because he never took the time to understand his emotional needs, instead just trying to maintain the full life balance he thought he had and was entitled to. He thought the pornography helped him maintain his homeostasis, without realizing how unhealthy it was and how it had truly taken over his life. I don't necessarily agree that the punishment he received was fair. Four years in prison for talking to someone on line that wasn't even really a minor, seems excessive. But it happened in Florida, which is known to be very strict on it's "child predators." I get irritated when I see others who had actual physical contact with a real teenager get less time or no time at all. But the good thing is that lightning bolt almost immediately had the desired effect. Tom started counseling. He started actually being honest about his addictions and realized how unhealthy they were. He realized that he had never dealt fully with the deaths in his family and he needed to take a step back to take care of his own mental health. While awaiting trial he became very active in a church and began volunteering with Meals on Wheels. He started counseling others who were going though similar issues and he joined sex addicts groups. He actually achieved true self-actualization before he went to prison. He has been there for a year and while there he has gone through the steps of the hierarchy again. At first he just needed to find out how to survive there and now a year later he has formed relationships, friendships and has obtained a job in the chapel. He leads bible study and counsels others. He says he is there for a reason and that reason must be to help others get through their current situations. So in a year's time he has managed to climb the tiers again.

In my job as and Occupational Therapist, a simple way to think about what I do is to help people achieve their highest functional level on the hierarchy. When I evaluate someone I am assessing their current functional level and the level they used to function at before their illness. Someone who comes right out of the hospital and is fully dependent on family or private aides to care for them is functioning in the first tier, maybe even below it if they can't manage any of their basic needs themselves. If they used to be fully independent and functioning at the top tiers, then they need my services. But if they have been functioning at that level for quite some time - those who are terminally ill or advanced dementia - then there is not much I can do except make sure the caregivers know how to address their basic needs. If someone comes out of the hospital and is already independent with their basic needs and is planning to go back to volunteer at the library and attend their church council meetings, they also do not need me. It's those in the middle that need me the most and often those with chronic illnesses who don't know how to manage their illness well enough to achieve a higher sense of self also can benefit from OT services. (managing their pain in order to be able to enjoy a dinner out with family, or manage their energy level to be able to go to church again).

The caregivers of these patients are often overlooked. We pile on the responsibilities to the family members who are taking care of their loved ones and insurance dictates that if they have a reliable caregiver then they need less of our services. But the caregiver has a hierarchy to maintain as well in order to successfully take care of the loved one. Just like a new mom has to be have a emotional balance in order to adequately care for their newborn. Much of my focus is making sure the caregiver is also taking care of themselves and is maintaining a balance. They might need to get some support from other family members or private aides so they can focus on their own needs. I had a patient recently who had a life long diagnosis of schizophrenia. She had been in the hospital for pneumonia but had a mental episode because of getting off her meds while she was sick. Her primary caregiver was her sister. But the sister was also caring for her husband who was recently diagnosed with cancer and needed frequent transport to Boston for treatment as well as being taken care of during treatment. She also had a 97 year old mother who lived alone, but had recently been failing and needing more attention. So this one woman would accompany all three of these people to their doctor's appointments and the doctor would turn to her to give her the instructions on what the patient needed, not understanding that she was caring for three dependent people - in three different homes- at the same time. When I would talk to her she always seemed upbeat and positive. I would be amazed at her strength but at the same time worry she was actually pretending to function at the top tier when in actuality she was barely meeting her own basic needs. She would utter under her breath, "I have to find a way to get back to work. I am the only one generating an income right now." I am not a social worker, but in order for my patient to have her basic needs met, the caregiver needed to be able to function. We would talk about who else could step in and help out (not really anyone except occasionally a niece) or what social resources there were to help. We were able to get my patient into a adult day health program which gave the sister 6-7 hours a day to be able to focus on caring for her husband. She hired a private aide to make sure her mom had dinner and was taking her meds at night. By the time I discharged I felt like the family was operating at a better balance and the caregiver would be able to eventually return to work, but wished she didn't have to. But that's what our society dictates in order to survive.

So where I am functioning right now? Well, I'm writing for the first time in five years or so? So that's something. But I have to admit I have been at level three for a long time. I make sure mine, my kids and Shawn's basic needs are met. I make sure they stay up to date on their appointments, work full time, manage all the finances, take care of the house, yard and pets. But I am not going above and beyond for anything else. The landscaping stays basic. The work that needs to be done to the house can wait. The deep cleaning is not important. The requests to attend fundraisers with friends go unanswered. The political diatribe of the country gets a quick daily skim without too much overt worry. On a side note that probably inspired this blog post, I recently watched interactions on-line over a recent protest in town in regards to the conditions of border detention facilities and thought, "Wow. These people must be fully self-actualized to be able to have that much passion for people thousands of miles away that they have never met and have absolutely zero impact on their lives." I admire that their lives are in such great balance that they can devote themselves to such important social matters. But sometimes I wonder how things really are in their internal lives. Are there people closer to them that might need their attention or help? Are they overlooking someone like my recent patient's sister who is struggling to care for everyone by herself, medically, emotionally and financially? Should maybe some of these people seek out those that might need more of their attention instead of them holding protests and arguing on-line endlessly with other people they don't know and with probably never know.

Off my soap box and back to why I am only at a three and actually happy to stay here for awhile. I have my responsibilities and in order to be fully present and devote myself to what is important I will continue to say no to unimportant things (unimportant to MY life, survival and the survival of my family, but important to those who can devote their time), continue to meet only the basic needs and just keep things SIMPLE in order to not eventually self-implode. Yes that means saying no to yoga classes or spin classes as they are not something that has ever been emotionally helpful to me. To meet my emotional needs I like to read, write (again! yay!), play Words with Friends and watch movies and cuddle on the couch. I might say no whatever takes me away from this things that keep my life in balance right now.

And what is important right now? Keeping the emotional well being of my daughters forever in the forefront of my mind. Are their basic needs being met, are they happy, balanced, self-actualized? Are they able to achieve their hierarchy without me? Working on that. Teaching Kylie to drive has been put on the back burner because it is a huge stressor that I can't focus on now. I just wish a fairy driving instructor would show up and take over.

But the one who needs me the most right now is Shawn. He is battling with a very serious chronic illness and I am doing all I can to help him get the best care possible and find a way to manage the illness so he can have somewhat of a functional life. The illness he has, Cyclic Vomiting Syndrome (CVS), has to be probably one of the worst chronic illnesses that is not immediately terminal that anyone could endure. Imagine vomiting 6 hours a day, several days per week. Imagine when you are not vomiting you are having other severe intestinal discomfort and running to the bathroom every 30 minutes. Also imagine severe joint pain that sometimes leaves you unable to stand or to walk, needing crutches at time just to rush to the bathroom.Now also imagine trying to work and make some sort of income while going through all that. And no one outside of the house really understands the reality or full scope of what's going on with you so their expectations of you are to fully participate in what they need/want of you. And imagine doctors just kind of shrugging, ordering more tests and pushing a new med on you without really any idea if it will help.

Just this month Shawn has appointments with his primary care physician, a rheumatologist, hematologist, cardiologist and psychiatrist. Also I am working on getting him to a CVS specialist at Mass General, hoping they can help more than the other two GI doctors he has been to. All of these appointments need a ton of paperwork filled out and phone calls to be made and test results to be sent. It is a full time job being the caregiver of someone who has such a significant illness. He can't manage this stuff himself. He can barely manage his own self care. Also we have done the long arduous process of applying for disability which we just found out this week that he was denied for because apparently he can stand and lift 10 pounds. Yes- his 10 pound puke bucket. Seriously. Ugh. I would like any of those people who made that decision to try to work on a day that they are wracked with a horrible stomach bug. Yes, you are puking and having diarrhea every 10 minutes but you must still get on a roof and paint without falling off or passing out or puking on the person's roof. And he has done that. And in the bushes, and in his car, and on the side of the road. We can appeal and plan to, but will wait until this latest round of appointments because if a new diagnosis comes out of it that will be helpful in the plight.

One new diagnosis that may be causing some of the issues is genetic hemochromatosis or an iron overload in the body. This was found recently on bloodwork conducted by his PCP, showing a genetic mutation as well as excessive iron stores.  If your body has an iron overload then your organs cannot function and can become damaged. It makes sense for many of his symptoms and is the reason he is seeing a hematologist this week. My hope is that the hematologist will offer a treatment that can actually help him to feel better, but as I know in healthcare, you tend to put your full optimism and hope into that one specialist that will make it all better, only to leave with extreme disappointment that they can't do anything either. So I have learned to not get my hopes up too high or have expectations that someone will actually listen at how debilitated he is and actually help.

I am trying to help Shawn try to stay on the hierarchy. Right now honestly he is barely at the first tier, but he tries to be at 2 or 3. He tries to balance work and the illness and insists he can do it. I actually want him to just quit trying to work altogether and focus on that first level of basic health, but he insists he can't do that. Six months ago he was so bad he could never make it to work in Chatham. He was constantly having to call in sick and his boss, although compassionate, was frustrated at not being able to rely on him when she is having to make promises to her customers. He felt the stress of constantly disappointing her and with my advice I suggested he quit and focus on his health. He did and for awhile he seemed to get a little better. He was on a new med at the time that seemed to be helping. So we cautiously took some steps to start his own business because it would be easier for him to set his own hours and not make any specific promises. But now, that new med is no longer working and his illness has taken full hold of him again. I think it's time to back off of trying to work and focus again on health, but he is too proud to fully rely on me financially, but I try to convince him that if he can rest and care for himself then the GOAL is to have better health and eventually be able to work his way back up the ladder. But right now he is trying to do more than he is capable. Trying to pretend at a higher level than reality - which as we have seen before tends to backfire.

So that same God that sent a lightning bolt to Tom is somehow testing me. Is He trying to teach me extreme patience? Compassion? Empathy? Or has He just put me into this role because he knows I might be good at it. I might be the only person who will help Shawn through this and get him the treatment and help he needs because no one else would care enough. It is very difficult to see someone you love suffer so much.

 I pray daily that Shawn will feel better and promise God that I have learned my lesson. I am more patient, compassionate and empathetic than ever. I understand unconditional love. I am good now. We can move back into that life where I felt I could be fully self-actualized. And I promise I won't ever take it for granted again.

And those of you reading this? Where do you fall? Are you at the highest tier? Are you feeling balanced and fully self-actualized? I hope so and if you are hold on tight to it. Don't take it for granted. And look around to your close circle and see who might be struggling and need some assistance from you.And don't just ask "is there anything I can do?" Because they will say no. Actually show up and do it. Bring a meal, get some groceries, take their loved one they are caring for out for errands, something. And if you are pretending to function higher than you should, it's ok to back off and make life a little more simple. Say no to those things that aren't going to benefit you to stay balanced and stop feeling guilty for saying no to those volunteer requests when you need to be helping yourself and those close to you first. Because pretending to function better than you are only hurts you in the long run. And if you are one that's struggling, find some help to pull yourself up. Don't be afraid to ask. DON'T say no to those offering. And don't forget to ask for God's help as well. He really is listening.





Saturday, April 26, 2014

Coping Strategies for Teens and Tweens

Kids killing each other because they got turned down for prom. . .kids shooting up a school because they have been bullied. . .kids killing themselves because they feel isolated and alone. . .where do these strong feelings come from and how do we as parents see the warning signs or help create an environment where our children can cope with life's disappointments and discouragements without the sudden and devastating lashing out?

I have one child who tends to react quickly to emotion. She might explode when angry or frustrated but then five minutes later is over it and happy. My other child is the opposite. I can only usually get to her emotions and feelings after prying and questioning and she tends to hold onto her feelings longer.  We have taught them the basic, immediate coping skills of stopping and thinking before reacting, of counting to 10, of hitting a pillow instead of someone else, and breathing in the good energy and out the bad. Sometimes they work, but I find some of these other global coping strategies we use on a daily basis to get our kids to appreciate and interact positively with the world around them are just as useful. 

1. Talking with an older adult (other than your parents). It is such an important skill to be able to carry on a conversation with someone in a different generation. I work with the elderly on a daily basis and have learned something from just about each and every one of them. I hear their joys, their regrets, their life lessons they like to share. I see them in all aspects. From the well-loved and happy retired couple who spends time with their grandchildren and has their son in law mowing their lawn for them, to the isolated and alone widower who has no one to even give her a ride to a doctor's appointment. I hear how they got to where they are in life. I hear why they might be lost and forgotten. They give amazing perspective to the different ways we lead our lives and the attitudes that go into getting us where we want to go. Teaching our kids to reach out to them whether it be through church, through the neighborhood, or even in our own families is an important skill. Have them sit and have a conversation. A conversation where they are not just answering their questions, but also asking their own. "What was your favorite age? Where was the best place you ever traveled? What is the best book you ever read?" They will be enthralled with all the information they can learn with just a few simple questions. And then have them do something for them. . .offer to rake their lawn, bring them a meal, brighten their day with flowers for their kitchen table. 

2. Have a positive attitude. This seems so simple. Just don't let those negative thoughts permeate and ruin your day. I see how attitude affects people so strongly in their recovery from illness or injury. Those patients of mine who think positively and greet therapy with enthusiasm recover much quicker than those who let the negativity and anxiety take over. I once had a patient whose blood pressure was extremely high that day and found out that he was still reeling from spilling his coffee earlier that day. Another patient would spend 20-30 minutes of each therapy session venting about one irritation or another she had encountered that day from a phone call from a telemarketer to not hearing back from a doctor about her hundredth question that week. Redirecting her to what was important.  . .her therapy was nearly impossible. These types of patients take twice as long to accomplish their goals because we just simply can't get to them when they have difficulty dealing with the little things that overwhelm them. How we deal with these little hiccups truly does affect our overall health and ability to accomplish any other things in life. Another patient's wife was complaining how last year on her birthday her husband was near death in the hospital and this year he spent the day at doctor's appointments and with therapists. I told her that it certainly is a step in the right direction. She looked at me with contempt and said, "Do they teach you to put a positive spin on everything?" No one taught me. . .I just choose to, I told her. I can't change the way people think. But I can change myself and I can pass on lessons to my kids. When they get off the bus with the day's difficulties spilling from their mouths we try to find the good parts of the day as well but also try to sort out the problems one by one and turn them into learning moments. Look at why you got that bad grade. Look at how others did. Maybe it wasn't a valid measure of your knowledge. Maybe you messed up and studied the wrong information. Maybe you forgot to study. What can you learn from it and how can you improve for next time? So many kids just think that string of bad grades means they are a failure and start to give up. We can learn from each and every failure. What if a boy/girl you like doesn't like you back? It's only a brief moment in your long life. Soon you will like someone else. You are at an age where you are learning what type of person you fit with and that includes what type of person meshes with you as well as you mesh with them. A crush might just be based on a cute face or they way someone is liked by everyone else but might not be a right fit for you once you get to know them. Remembering that this is just one learning experience in a lifetime is a way to keep perspective and stay positive. The best is yet to come. 

3. Have faith. This is so important on so many levels. Believe in something bigger than yourself. So many people have fallen out of a church life because of the stigma associated with religions. True religion teaches love, respect, humility, selflessness, kindness. Find a comfortable fit with a church. You don't need to stay at a church that makes you feel guilty or uncomfortable…or that teaches judgmental attitudes. There are so many choices out there and the rewards of a church family are immeasurable. The loving embrace of Sunday School teachers, ministers, youth group leaders will help kids to have someone to turn to and mentor them through tough times. They will share life's joys and concerns with them and help them to have strength and forbearance to get through some of the toughest years of their lives. Opportunities to give back to the community and volunteer are innumerable in church as well. . .from babysitting in the nursery to serving meals to the homeless, to traveling across the country to build houses for those who have nothing. . .all can be accomplished in almost any church. 

4. Count your blessings. When the kids do volunteer and see a glimpse of those down on their luck, they are reminded of how lucky they are. Even if they don't get the latest iPad or Xbox or Uggs, they can learn to appreciate the fact that they have a roof over their head, meals on the table, clothes to wear, a family who loves them, friends who care about them. They have what matters the most. The rest is gravy. 

5. Keep perspective. The kids think I'm cheesy because I tend to throw out these cliches. As Scarlett O'Hara says, "Tomorrow is another day." Annie says, "The sun will come out tomorrow." The Jewish adage, "This too shall pass." After I had my car accident as a teenager and was dealing with the following emotion, my grandmother hugged me and said to me, "It will all come out in the wash." When as a teenager and having a heart to heart with my father who had heard of a recent suicide he told me, "Suicide is a permanent solution to a temporary problem."  The latest devastation in their lives is just a temporary set back. Live is beautiful and long. Live it with joy and abandon.

6. Others don't judge you nearly as much as you judge yourself. Do you care how big your friend's thighs are? Do you care if the girl sitting next to you is wearing the latest fashion? I hope not. . .and I guarantee you that others are not thinking about you as much as you think they are. Why? Because they are just as self-conscious and self absorbed as you are. If they see you wearing a bathing suit without a care in the world, they will respect you more than if you are hiding behind 2 or 3 layers. Because then your self-consciousness becomes obvious and they have something to focus on. Teens like to feel better about themselves by relishing in other's discomfort. Sad but true! Be confident, be self-assured and no one has any reason to look twice other than out of respect. 

7. Speak up to a bully. If someone is being intentionally mean, tell them. Simply say, "that was a mean thing to say." And walk away. Then forget about it. That person is trying to feel better about themselves. Distance yourself from these people and wait for their mean phase to pass. Don't necessarily count them out as future friends. They are growing and learning too. After they have experimented with trying to have power over others, they may mature and realize it is more isolating and lonely than just being kind to one another and you may find a good friend in them sometime in your future. Holding on to anger and negativity toward them for something they did to you in the 3rd grade serves no purpose and keeps unnecessary negativity a part of your life. 

8. Learn to take care of another living thing. Whether it be a plant, a guinea pig, fish or puppy. . .focusing your energy on making sure something else is cared for and stays alive is an important skill to have. It reduces your inner focus and makes you fall in love with something. It makes you have empathy and compassion for a living object and you are rewarded with they grow, thrive and learn in response to your care. 

9. Read an inspiring book. We can't experience the entire world and the way they live but we can understand so much more about the history of our trials and tribulations through books and movies. Whether it be about slavery, the holocaust or modern day human trafficking. there is so much going on in the world that will shock you, but inspire at the same time. It will open your eyes to how safe and secure you are in your corner and hopefully provide that sense of perspective that your life is pretty amazing and special. 

10. Smile. Every day. Just do it.

These are just some strategies I try to teach my kids and use myself to maintain a positive attitude. I'm sure there are thousands of others. Please share what coping skills you use in your family and maybe I'll make a future blog post with your ideas! 


Sunday, January 5, 2014

This is 40. . .and a half

On my 40th birthday last July, a dear friend of mine pulled me aside and gave me a quiet tidbit of advice. She said that 40 isn't really any different than 39 or 45, but what is different is the moment that you learn to stop caring about what others think. For her that happened sometime between 40 and 50.

I nodded at that moment, thinking, I don't really care what others think now.

Or do I?

Since then I have been paying attention and have realized that I do care. Or at least I did. In the past 6 months or so I have felt tremendous personal growth and realization. Is it because of the age? Or the life experience? Or does that all coincide together? Suddenly I am more comfortable, happy, secure, peaceful. And I think largely because I've just stopped worrying so much about other people.

Some of the changes I have felt gradually. . .not intentional changes necessarily. . .but changes that I see in our lives versus where we were a year ago.

1. I don't feel it is necessary to accept every invitation. We won't be left out the next time just because we said no this time. Sometimes missing the party and staying home for a family movie night is the best place in the world to be.

2. I've stopped venting. . .as much. But aren't you supposed to vent when something is bothering you to get it off your chest? I've learned sometimes venting makes it worse. Because in my attempt to portray the situation to a friend or to my husband, I have elevated it to another level. But if I shrug it off and let it stew a day or two, I find the issue tends to go away on its own. Whereas if I have brought someone else into it, it will linger and sometimes is compounded by their reaction or attempt to give advice that may or may not make it worse. If after a few days, the issue is still bothering me, then yes. . .time to share with those I trust.

3. I hold secrets closely. I saw an episode of a sitcom recently where the father was enjoying laughs by sharing stories about his kids. He didn't realize that the kids were mortified by what he was saying and learned by the end of the episode to keep the stories to himself. But found himself at a loss for words in some awkward social moments and had to just smile and nod along. So, I don't think I have ever totally humiliated my kids with stories about them, but have I over-shared? Have there been things I have told friends about them that would embarrass them if they were in the same room? Oh definitely. We all do it. But why do we do it? For a laugh? For support? To make the friend feel less alone by letting them know it happens to us too? Recently I have found myself about to share a funny tale or a story my kids told me...but I have stopped myself and wondered if my child would be giving me permission or not to share it. If I want them to continue to trust me and tell me what's going on in their lives and what's on their mind, I have to keep their confidences. Believe me, this has been very hard. Just smile and nod. . .smile and nod. . .

4. I need people less.  I used to be a member of Mamapedia, the local moms club and other various on-line parenting groups. I would frequently ask advice and exchange ideas on parenting. Slowly over time I have let these memberships lapse, finding that the solutions or advice I would get would usually not work for our situation and what we would come up with as a family would end up working out best.  And when it comes to connecting with others through text and Facebook, I have found I am doing that less as well. My group of friends is a god-send and I couldn't ask for a better community. But lately I have been just at peace on my own with a good book or taking some quiet time by myself. I don't need to be texting or checking Facebook or calling someone or be in touch with another person every minute of everyday.  I found that the phone sometimes, now is in the next room, forgotten. I don't NEED that connection as much. I have me. It's a great feeling. And when I'm with my family I am devoting my full attention to them, not trying to have a conversation via text with a friend at the same time that I am talking to them.

5. I will continue to stand up for what's right. I tend to know a lot about what goes on around me; more than I would like to know sometimes. Sometimes in the past I have been afraid to speak up because of repercussions. Or maybe I have spoken up, but then retracted because the fallout wasn't worth it. It's scary to be the whistle blower because ultimately there is someone who is on the other side of the situation who will not like what I have to say. But if it is the right thing and I feel passionately about it, I won't sit by and I won't be afraid of the outcome. There is a lot to be said about flying under the radar too. It has to be a delicate balance. This is an area I think I will forever be struggling with.

6. It's ok to be late. I have always been on time to everything. Even early most of the time; until I had kids with other ideas. These are our most stressful moments - trying to get out to the door to make it on time somewhere. I've stopped worrying about it so much. I'm not talking about a disrespectful lateness to things but if making to to dance class right at 4:00 means that we have to scream and yell and rush around, it's not worth it. Get what we need to get done, get in the car and go. Ever since I have relaxed on this in our house, I've found that even with extra feet dragging and difficulty getting that bun in the hair just right, we are never more than 4 or 5 minutes late. Sorry to the teachers. . .but life is much nicer to not be so stuck on leaving at that exact minute we need to. And there is always someone still getting there after us. This doesn't work for the bus because it doesn't wait. But I have found that we rush, rush to get to the bus stop on time only to usually find out IT's 10 minutes late. If we miss it, I drive them. Whatever.

7. And obviously I don't care about what others think if I can still show my face in public after my husband's recent karaoke and blizzard videos. Lol. . .He stopped caring about others judging him a long time ago and just lives his life the way he wants. He's happy! Used to be that kind of stuff would  embarrass the heck out of me. Now I just roll my eyes and laugh with him. But he couldn't talk me into being on camera with him, so maybe I still care a little. . .

I have the benefit of being one of the youngest of my group of friends and I learn so much from the wisdom of the strong, beautiful women around me. I'm sure I will continue to make mistakes. I will continue to learn and grow. I might read this a year from now and think. ..Oh, I was so naive. I was such a silly 40 year old. But for now, these philosophies have come about out of necessity and maturity. They are me. And I am happy and fulfilled.

For now.

Welcome to 40 and a half.




Saturday, August 31, 2013

Oh Summer. . .I will miss you. . .

The days are becoming shorter, the sweatshirts are now always close at hand. Backpacks and new clothes lay waiting for their time to shine. Summer is drawing to a close.

Summer is like an endearing friend. A friend who comes to visit once a year and stays for a couple of months. We try to cram as much fun together as we can...but knowing the visit has to come to an end soon and responsibilities have to return always hangs over our heads. When looking back it seems like just yesterday we said goodbye to the teachers and homework, but then when I think about how much we did accomplish, I realize summer's visit was just perfect again. We did almost everything we had hoped and wished.

Summer is when I get my kids back. It's when I can return to planning their days, setting goals that I can help them to accomplish, returning balance to our lives. I can make sure that their social, physical, emotional and academic lives are on track. It is my glory time of motherhood.

In June, we all sat down and made a cute sign in rainbow colors that everyone contributed to. What do you want to do this summer? I think ice cream made the list a few times in a few different ways, but also there was reading, cookouts, sleepovers, camping, hiking, beach time, friends, family time, drive-in movies, vacation to Kansas, math facts (ok...that was me), s'mores, parades, fairs, Wicked Broadway show, Mom's 40th birthday party, board games. . .

And yes, we did it all. We managed to fit in all the required fun stuff, and even ran across some unexpected new experiences. . .hiking with Grampy and Grammy in Maine, learning to rainbow loom, Pop Warner cheerleading, learning to sew, trail rides in the mountains (oh and the unexpected 104 degree fever in the mountains was definitely a new experience!).



But also had our projects to do....those projects you look at in February or April and say, "I'll have time to tackle that this summer." Like organizing the photos from the year before, donating old clothes and toys and making way for new things, getting the work done to the house like a new roof and fresh paint.

And to keep the brains from turning to mush, they have their academic goals to accomplish, this year they both had school math packets to complete, but I wanted them to have reading goals and writing goals as well. If they complete their goals there is a prize at the end of the summer....one thing they would like to have...call it a souvenir of the summer. For Melanie this year it is a Cape Cod Alex and Ani. For Kylie it is her Beth Walsh dance jacket she has been wanting for years. 

Then there are the physical goals. What are the things the kids are struggling with that I can now have time to help them accomplish? Anything from learning to ride a bike to mastering a cartwheel. We set a goal, provide an incentive and usually are able to see it theough by summer's end. This year I set a goal for myself and the girls...a mutual fitness goal of running a 5k. We got a late start on the 8 week program, so it won't be accomplished by summer's end, but we are chipping away and I am hoping we will be making a decent showing at the October 20 Forestdale 5k.  (Which is huge because the three of us do not share Tom's passion for running...AT ALL). 

But my favorite part of summer? The lazy days at the beach...one text to all the friends, pack the car, sit in our favorite spot while friends show up throughout the day...kids running back and forth...disappearing for a few hours...appearing again with golden skin, sand in every crevice, growling bellies...Days that are endless and turn into evenings with more plans being made...the kids not wanting it to end with begs for sleepovers and moms shrugging..."sure...we have nothing else going on...." Moms picking up pizza, subs, or just stopping for ice cream, then sharing a glass of wine as the kids, with their endless energy run around the yard and house. Those days are harder to recreate as the kids have gotten older and the moms have all increased their summer work hours, and even the kids have more responsibilities...soccer practice, cheerleading, dance. But when those days do happen haphazardly they are perfect and to be cherished and embraced. 

Now its coming to an end. Who wants to give all that up and return to the daily grind of up and out the door early with lunches packed, with the thought of 3 hours of homework looming  on the other  end of the day? Not me. But I can be encouraged by the thought of the fun that the school year can  bring. The new friendships, the fall beach bonfires, football games, Halloween costumes and  parties...not to mention how much easier my work schedule will be with a consistent schedule for the  kids. 

Summer? It's hard to say goodbye to a best friend. I am already thinking of next year and what fun we will have and what we will accomplish together. Next time I see you the girls will be another year older and several inches taller. But I don't want to rush it. Time is a beautiful fast moving thing. So I will embrace fall and the wonders and new experiences it will bring. I will put you away as a cherished thought and comfort of knowing you'll be back. 



Saturday, January 19, 2013

A Tribute to our Jayhawk


It all started with a ficus tree. . .

As a new couple, Tom and I followed the recommended pattern of future parenting. When we first lived together in an apartment in Lawrence, Kansas our first joint, living purchase (besides the ill-fated fish that we shall not mention) was a impulsive decision to buy a ficus tree. I barely remember the day we brought it home, but I do remember how quickly it died in the corner of our kitchen. Depressed and unsure what to do with it, we set it on the porch outside where the Kansas winter buried it in snow and ice. I recall looking out over its dead branches throughout the months, thinking when spring came we would just toss the whole thing in the dumpster.

But then a miraculous thing occurred when the weather warmed. Instead of dead, empty branches, a new sprout of green leaves had formed off of the main trunk. Something was still alive in there despite being starved and frozen for months on end. Happily I pruned away the dead branches and pulled it back inside. When the time came for us to move to Massachusetts less than a year later, I remember Tom saying we should give it away or toss it. I was incredulous! No way. This was the miracle tree and it was coming with us! We made room for it and it made the 1700 mile trek in the back of the U-Haul.

That ficus stands in the corner of our kitchen to this day. . .18 (!) years later. It has lived in 5 different homes with us and a symbol of our lives together. When it starts to drop leaves every few months I panic momentarily, but then remember it will survive. Just like we have.

After our success with the ficus, of course the next step was to get a puppy. We had been married almost two years. We had bought our first home on Cape Cod that spring and had been talking about getting a dog. We both wanted one very much, but Tom was going away for an extended period of time for work in the month of June. Logic told us we needed to wait until he returned so all the puppy duties wouldn't fall on me alone. But once we had made the decision to get a dog, it was really tough not to scour the classifieds for possible leads. And of course once we saw the listing for black lab puppies not far from us. . .how could we not just go take a look?

So there we were. At a breeder's house in the rain. Standing in the mud room (and in this case it was a MUD room) looking at an adorable litter of six-week old black lab puppies all cuddled around their mother. We were just coming to look right? Strange, we just happened to have $400 cash with us.

I remember how cute they all were. There were puppies of all different sizes. They loved their mom and were trying to snuggle in as close as they could to her. They paid no attention to us.

Except for one.

One puppy was climbing over his brothers and sisters. Stepping on their bellies and heads to get to US. Wanted US. Forget all those other dogs and that mother dog. This one. . .the biggest of the litter with the biggest, roundest tummy wanted to check us out. He was clamoring to get closer, tripping and falling in his little puppy feet. Tom snatched him up while I went for a little, cute snuggly puppy that was barely awake. We snuggled and petted them for a few moments. I put one down, picked up another. Tom stuck with the big guy.

"I like this one." He said.

"Hmm." I considered the dog in his arms that was wiggling and squirming, just trying to get more attention from me and the person holding him. I remember thinking he was full of energy and hyper.

"What about a calm, sweet one?" I asked looking at all the quiet puppies at our feet.

"No. This one." Tom said, unwavering, trying to manage the grunting little ball of fluff.

It was true. The dog in his arms had the most personality and the most interest in us. After a few more minutes I was sold. We handed over the cash and listened to the instructions from the breeder on how to administer the deworming pills and other facts about the dog and his lineage. Then we were on our way. Proud parents of a cute black lab puppy.

I remember it took us awhile to come up with the perfect name. Should it be a tribute to photography? Nikon, Kodak? How about something reminiscent of our time in the midwest? We loved touring the Rocky Mountains together, hiking in the warmer months, skiing in winter. Rocky?

Cute but not quite right.

Something we both love and miss?

Our beloved Kansas Jayhawks. In Kansas, a dog named Jayhawk would be generic, confusing. Jayhawks everywhere. But here. . .it would pay honor to my home, the place we met, the place we fell in love and a way to remember our glory days at Allen Fieldhouse.

Jayhawk it is.

Who knew we would have to explain his name over and over throughout the years. "You named your dog after a helicopter? Is your husband in the Coast Guard?"

But it became a good story and we helped spread the word and educate these salty New Englanders about a tradition of college basketball. Now when our friends see a Jayhawk on TV or hear about the Jayhawks in the NCAA championship, they tune in and pay attention, thinking of us and our pup.

But back to the day our puppy arrived home. He was a sleepy guy. The energy and playfulness he exhibited at the breeder's seemed to be gone and he was almost lethargic throughout the afternoon and evening. When he did wake up momentarily it was to wretch and gag, revealing disgusting, white little squirmy worms all over our kitchen floor.

Uh-oh. Did we get a sick dog? We looked at each other sadly. The big tummy made sense now. We piled the dog back in the car and headed to the breeder's. Told him our concerns. He reassured us. "All puppies have worms. He's fine. He's healthy." Somehow he convinced us and we took him home again, making a bed for him in our downstairs bathroom, lining it with newspaper. As soon as we could we took him to the vet who put him on a new worm medication. That seemed to help and before we knew it the fat tummy was dwindling away and our dog started to grow!

Tom went away for his trip and I was extremely LUCKY to have co-workers at the rehab facility I worked out who were huge dog lovers. My boss had a lab of her own and she insisted that I bring Jayhawk, crate and all, to work each day while Tom was away. The patients would love him and I could continue the 2 hour crate training even while working. This was great! So for 2 weeks, Jayhawk came with me to work everyday. I would take him out for a walk every couple of hours and the patients got to love and frolic with a very rambunctious and playful little guy.

My parents came to visit their little grand-dog and during this time Jayhawk had his first experience with the beach. I remember my dad being nervous about letting him off the leash, afraid the current would carry him away. But Jayhawk loved it! Loved the sand, the water the birds, the wind. He was in puppy ecstasy. More, more, more became his mantra. He was relentless in his energy. Unstoppable! He also loved the people we would encounter. He would sail past other dogs and go right for the owners. Pet me, pet me, pet me. More, more, more. Love me. Aren't I cute? More, more, more. 

Sometimes Jayhawk's exuberance would bring me to my knees. He would not let up when he wanted something. He was a 15 pound bundle of energy. He wouldn't stop trying to bite my hands. Tears came to my eyes once in the backseat of the car and my dad had to shout from the front like he was an unruly child. The yell stopped Jayhawk momentarily but then he was back to his campaign to eat my hands. I felt like a child myself, wondering if I was in over my head.

Then Tom returned from his trip. I filled him in on all our adventures and it only took a few minutes of watching our out of control dog to realize that we were going to need some outside help. Call in Joe the Dogman.

Joe loved Jayhawk for his energy, but also seemed to laugh at us for our inept handling of him. We started puppy school and Joe continuously had me pinning Jayhawk down to show him who was Alpha Dog. Sure that calmed him for the moment, but then back up on the leash and I was a goner. We started with the simple chain collar, but soon Joe realized we were going to need to call in the big guns and graduated me to using the pinch collar. "Don't worry. It won't hurt him." He assured us. "Just a quick jerk and he will learn to stop pulling." This seemed to work. Sort of.

Nothing was going to keep Jayhawk in check, we soon learned. He was all puppy. He was all energy, rambunctious, unyielding. Full of life and love. We put him in classes with other dogs and he would embarrass us with his pulling and want for all the other people in the class (Dogs? What dogs? Let me at the PEOPLE!!). No amount of petting and love was ever enough. More, more, more. He seemed to say over and over.


We continued going to Joe until we finally accepted that Jayhawk's personality was just as it was always going to be. "Don't worry the puppy stage only lasts a couple of years," Joe said, laughing. Um, Joe? Did you mean a couple of years or 14 years? Cause we're still waiting!

If you meet Joe on the street today and bring up Jayhawk, I guarantee he will remember him!


We soon found more loves for Jayhawk. "Fetch" tops the list. Of course. . .he's a retriever! He fully lives up to this name and would run 10, 100, 1000 times back and forth across the yard to get the tennis ball. This carried over into swimming as well. Toss the stick and he would swim miles if he had to, to get it and bring it back to us. Never tiring. More, more, more!  Hiking, running, walks on the canal. . .loved them all. The more opportunities off the leash the better. He loved to be free. He would run ahead, but always come back for us. Are you still there? Come on. Let's go. More, more, more!! He would catch sight of a stranger near us and his tail would start going a million miles and hour and he would run to them. "Don't worry, he's friendly." We'd always shout. He'd dart past their dog and head straight for their hands. Pet me, pet me, pet me. Oh yeah. More, more, more! 

After a couple of years, we realized we had somewhat successfully parented this crazy dog. Were we ready for the real thing? You guessed it. . . Melanie came along. Tom did what the nurses at the hospital told them to do. Take something of the baby's home so the dog can get used to the smell. He took one of the little hospital caps. Um, let's just say it was destroyed in about 30 seconds. We were sure that wasn't going to carry over to the actual baby, right? He sniffed her and was curious when she came home, but then full attention returned to us. I think this marked a time that he started to calm down a little. . .Melanie was never in danger around him. She was never knocked over by his exuberance and he pretty much steered clear until she was old enough to pay attention to him. Then she became another source of food. His favorite spot was under her high chair. Sniff, sniff, sniff. She would drop a stray Cheerio and he would scramble, knocking everything out of his way to get to that one tiny morsel.  After she was out of her highchair he would stick his nose in the seat and lick and clean and push the chair against the wall, getting every last crumb.

We have never had to worry about crumbs on the floor with Jayhawk around. Hair yes, crumbs no.

Their bond was really formed when Melanie was old enough to throw a ball. We taught her how to use the Chuck It, to keep her fingers from being accidentally nipped and slime free. Over and over and over again she would throw it. I would have to call from the back door to remind her to let him rest and get a drink of water. He seemed to be thankful for a break and would pant heavily in the shade, but only momentarily. . .then they were back at it. Joy and love as the ball would sail through the air, over and over again.

Kylie"s birth was another barely noticed blip for Jayhawk. He took it in stride, not minding the division of attention, seeming to know that someday this new person was going to be another source of food and entertainment for him. Now I would be in the backyard with them. Pushing Kylie in the baby swing, Melanie playing with him, back and forth in the yard.

Then one day we heard the unmistakable chime of an ice cream truck getting closer. An ice cream truck in our neighborhood?? Never had this happened before! We ran inside, grabbed a few dollars and out the front door. To our horror. . .there was Jayhawk, doing everything he could to get into the truck. Man with ice cream coming to our house? My dream come true! How could life get any better!! Let me in!! Melanie remembers him being successful, actually getting into the truck with the guy. I must have blocked it out because my memory says I got him before that happened. Whichever it was, we never heard those ice cream bells on our street again after that day. Oh, and the ice cream we bought? I think Melanie had maybe one or two bites before it somehow found its way into Jayhawk's eager jaws.

As happy go lucky as our big guys was, we learned that he also had issues with anxiety. Put him in a kennel for a few days and he became a barking, quivering, sleepless mess with severe intestinal distress. After a few very large vet bills and a hoarse, exhausted dog upon our return, we decided home pet sitting was the only way to go for him. Also, long car rides got his anxiety through the roof. Sure we could take him on a 3 day car trip to Florida. We'll just give him a bit of prescribed medication to relax him and leave late at night. He and the kids will sleep the first 8 hours of the trip, right?

Uh-huh sure. Five hours of non-stop barking later, he finally laid down in New Jersey. Kids cranky, mom and dad with excruciating headaches. . .

On the way back from Florida we scrapped the prescription meds and doubled up on the Benadryl and spray bottles. Worked much better!!

At age 6 Jayhawk was diagnosed with a mast cell tumor. Cancer! We had it removed and worried. He's too young! Not fair! Then more lumps started to appear all over him. At first the vet wanted to remove each one, but these weren't cancer! Yay!! We switched vets and stopped removing the bumps and learned to live with a lumpy, but healthy dog.

In recent years, his eyesight has diminished, his hearing isn't as sharp, his back legs give out now and then. He can't jump into the car or up on the bed. He doesn't catch the treat every time I toss it to him. He can't find his ball in the woods after we toss it. He stops at the bottom of stairs and barks for someone to come walk him up (I feel like he's one of my patients. . .needing "contact guard assist" to go up and down the stairs!) At times I have thought he wasn't going to have much time left. . .his bladder giving out suddenly a few times in one week, but then it just stopped happening. A strange new lump that grew out of a paw, but then it just went away. Vomiting his dinner two or three nights in a row and weight that seemed to be melting off of him, but then his dinner started staying down and his weight going back up again.

The vet calls him the "miracle dog." She said at his 13 year visit that she thought we should prepare ourselves for the fact that he's aging and probably wouldn't see 14. At his 14 year visit she said he looked better than he did at 13!

Brandi joined our family last summer. . .my mother-in-law's Scottie Dog. She is a funny little thing. They get along well and certainly get each other going. Brandi has learned to be more playful and Jayhawk has learned from Brandi when it's 5:00 (dinner time!!). She rushes through her dinner and dashes back to help Jayhawk with his.  He just moves over and lets her climb up and eat out of his bowl. We have to watch every second of meal time to make sure everyone stays in their corners!

I asked the family today, individually, what their favorite memories with Jayhawk are. Tom said right away that he always loved taking Jayhawk for runs in the woods. Kylie's answer quick too. "Throwing the ball to him in the yard." I have many that come to mind. I love seeing Jayhawk at his most joyful - at the beach - in the water - running circles around his family, then settling down panting and peaceful. But I also like those times when I know he'll always be by my side. I make the girls' lunches and cut up the cucumbers for them each day and he never misses it, knowing I will toss him the ends.

But Melanie wouldn't give me an answer. The girl who has known him every second of her 13 years. The girl whose room is a "Black Dog" theme. The girl whose main birthday gift last year was a portrait of her dog that her dad took. The girl who lays on the living room floor, using Jayhawk as a pillow. The girl who has assisted the vet with every shot given, every toenail clipped, every aspiration of lumps done. The girl who panics every minute Jayhawk is outside and she has lost sight of him. The girl who has thrown countless number of sticks and balls to him over the years. . .hours and hours of endless, joyful play. Instead of answering me, she asked, "Why are you asking? You're scaring me. What's wrong with Jayhawk? Why are you writing about him?"

She knows. She understands. But denial is strong. Jayhawk had a tumor removed last month and she was there for it. I explained with the biopsy came back positive for aggressive melanoma what that meant. I told her that we are going to give him a pill that should help delay it from coming back quickly, but it is aggressive and he is almost 15 years old. Treat each day as a special one with him. Remember all his good times. Love him every minute he has with us. Learn from his endless energy and true joy that lives in his heart, his never quiet tail, his large all-knowing eyes. Know how deeply he loves us and we him. And know that despite the fact that everyone who has ever met him thinks he's a bit crazy, we are so happy that we chose him to spend his years with us and to be an integral part of our family.

But she's not ready to answer. Her answer is too complex. Too deep and too personal. When she's ready I expect she'll share some of her more special memories. Or maybe she just can't because every moment has been special. And she just wants, more, more, more. . . 



A dog is like an eternal Peter Pan, a child who never grows old and who therefore is always available to love and be loved.   -- Aaron Katcher