The end of an era--Bossman has left the building.

The house is too quiet. Just over a week since he's been gone, but a strange eternity all the same. I thought I was ready. He was 14-years-old after all; ancient for a German Shepherd from working lines. I wasn't prepared. I feel as though someone should come over a loudspeaker and announce "The Bossman has left the building." Maybe then I'll quit waiting for the encore.

A friend recently posted a link to an article on social media referencing mourning. The article described how mourning the death of a loved one was also mourning your own death. Conversations with that person will never take place again, inside jokes will be shared no longer...a past that is truly in the past brings into present focus one's own mortality. Boss's passing signifies this and more. It is the end of an era for me. I am struggling with the loss of him as well as letting go of a large piece of myself. I have lost grandparents, friends, an uncle, my mother, my brother, other pets, and an unborn child. I have suffered loss. I am no stranger to grief but this "letting go" of a chunk of my identity is a foreign concept that I am struggling with.

I'll never forget the first day I took Boss for a spin. His name was Bo at the time. I was instantly in awe of his vibe and presence. I met him as a puppy about a year before and had heard how difficult he was to housebreak but I knew that he loved children and children (one in particular) loved him. I was slightly apprehensive with him at first because I wasn't the one who had taught him the basics but I remember his smile putting me at ease on that grassy roadside in Douglasville, Georgia. He looked at me with a twinkle in his eye and invited me to have fun with him. A few months later he was mine. Within weeks I lost my right-hand-dog, Thor. Within months I learned I was pregnant. As my belly and my awareness of struggles ahead grew, so did my bond with Boss. We worked hard on developing new skills together and teaching other dogs and humans how to have a better relationship. He let me cry on his neck as I grappled with the future and he made me look good when we were working. The day he jumped up on the couch and rested his head on my swollen belly I knew plans had changed. The dog once destined to become a K9 was now mine. He chose me and my unborn baby in that moment. I was his person.

Boss was there for me after Parker was born and Charles had to travel. Boss chose me as his person on multiple occasions when he could have run away or acted like an idiot or at the very least not wanted to participate. He was brilliant so many times, going above and beyond what was expected. We moved away from family and friends in Georgia to North Carolina and he became my best support system when Charles was away. He loved me, he loved Parker, he loved all the things I chose to do. He was my marathon training partner and ran twenty miles or more on multiple training runs. He was always so happy to just be near. He never had to be in your face or in your space; he was like that friend that you didn't ever have to talk to--you could be content lying in the grass staring up at the clouds in silence for hours as long as you were together.

Boss was very healthy throughout his life and I am very thankful for that. He began battling Degenerative Myelopathy a little over two years ago. I thought that would be what would take him until last Monday. Parker and I walked in the door after my morning of coaching and his day at school. Boss didn't get up from his resting spot in the middle of the kitchen floor. He was breathing, but I instantly knew that something was off. Parker commented that Boss was "REALLY tired" when the dog didn't rise to meet the loving face of his boy. I picked up Boss's head and felt the drool that had trailed down his neck. I saw the nystagmus in his eyes and I knew. He had suffered a stroke. He couldn't walk. He couldn't stand without my help. I spent the night on the floor with him, partly to keep him as comfortable as I thought possible until the inevitability of the next day dawned and partly for my own selfish need to come to terms with what was happening.

I couldn't help but think back on the stages of my life he was with me through. We became a team when I was in my early thirties and determined to take over the dog training world. He was by my side as I instead became a first-time mother of a child who would need two major surgeries within the first year of life. He became my marathon training partner and silent confidant when we moved away from friends and family and into a new life two states north. He was the perfect example and disciplinarian for the service dog trainees that came through our house. He protected me when I was alone at the fledgling CrossFit gym that I had no idea how to oversee. He showed our goober Bull Terrier what it meant to be respectful. He barked at the doorbell until he heard it no longer. He waited for his boy to get home from school at the right time every day that he left on the big yellow bus.He was patient. He was loving. He was firm but fair. He was stalwart. He was fun.

Tuesday was a hard day. Beyond hard. I cried into his neck like I had so many times before. I held him tight the whole time. Even for awhile after.

Everyone I know has been incredibly supportive this week. Current and past members at the gym, family, friends, fellow dog trainers--so many have reached out with sympathetic and empathetic words and gestures. I appreciate each and every one of them. For those who might not totally understand: be gentle with me in the coming days. Please understand if I cry. Don't look away from me. Just hug me, or grab my hand. Let me cry. Know that I am grieving not only the loss of my favorite Hairy Hooligan, I am grieving what will likely be the last German Shepherd to live in my house. I am lamenting the quiet passing of the thirty-something go-getter dog trainer that could run circles around most and wasn't scared of even the toughest dog. I am sad because I will never again witness my toddler putting bunny ears on a dog . I am remembering the hours spent running roads and trails with four feet padding alongside my two.

I know I am where I am supposed to be. I love what I am doing. I no longer need a dog that is trained to do everything under the sun. I know that I still have dog training clients that appreciate what I do and I know I am still a good dog trainer. But I'm still sad and I'm still grieving. When Bossman left the building, he took a big piece of my heart and a chunk of my identity with him.

Harvesting Goals

Almost three years. That's how long I've been staring at the same two goals written next to my name on the "Goals" whiteboard at CrossFit Altius. Every day that I walk into the gym I pass that whiteboard as I go to unlock the doors. I pass that whiteboard every time I have to go to the bathroom. I pass that whiteboard as I leave, too. The board has space for each athlete to list four goals. In 2016 I listed three goals and achieved one. In 2017 I carried over my two accomplishments-in-waiting and added a third. I crossed off the third goal and had to drag the same two misfits with me into 2018. This year I left it at that...two goals that have been around since 2016 and two empty spaces. No other options.

By mid-September I was really concerned that 2018 would be a three-peat. I didn't see my goals as overly lofty: a ring muscle-up and a 115# snatch. The prerequisites were there. Yes, I am a 43-year-old mother who doesn't come from a gymnastics or Olympic lifting background, but I am confident performing similar movements and lifts. I just knew that 2018 was going to be my year. I have focused on developing my coaching skills as well as growing as an athlete. Staying in my lane and not comparing myself to others has been huge for me. If I just focus on giving my best effort on any given day, I can celebrate the victories of others and myself with a glad and sincere heart. I try (not always successfully) not to make excuses. I try to celebrate small feats and personal wins and unexpected achievements by myself and others. In fact, I've tried to eliminate every expectation that isn't about giving today's best effort from both my performance and the performances of my fellow athletes in every class that I coach or take. I've been working hard. Why were my goals so darn ELUSIVE?

Turns out they weren't all that elusive after all. I just had to wait for them to ripen before I could reap the fruits. I liken goal-chasing to gardening. When I contemplate my own very sad backyard garden (that suffered from neglect and Bull Terrier abuse all summer while I was busy tending other areas of my life) I can put the whole thing in focused perspective. We have all heard colloquialisms like "reap what you sow" and "planting the seed." The analogy goes so much deeper and I think it's worth cogitating.

I put the seed down when I wrote the goals on the board back in 2016, and then I reseeded in 2017 and 2018. I didn't give much thought to the soil I was throwing my goals in until recently. Once you plant a seed and it germinates, little baby roots start sprouting from the radicle and they are reaching out to gather nutrients from their surroundings. If the dirt isn't healthy and rich in nutrients, the sprout won't thrive. Think of the people you surround yourself with on a daily basis as that soil. People with whom you have healthy relationships of substance help you grow. You know you can rely on those people to fortify you and help you to establish a sturdy root system. I've said before that my people are the best people and I'll say now that I'm incredibly lucky to have the best damn dirt around. I don't even think they'll be offended that I likened them to dirt! The people that I have the pleasure to train with on a daily basis support me inside the gym and out. They put up with my temper tantrums and they celebrate my victories and allow me to celebrate theirs. They offer advice and want to help. They don't belittle accomplishments. We all work to make each other better. We laugh, we joke, we dance (mostly that's just me), and we have real conversations. I have awesome dirt.

One of the main things that I didn't know I was lacking was sunshine. Plants use photosynthesis to convert sunlight into energy used to sustain life functions. Fuel. Food. Nine weeks ago the leader of my dirt tribe, The Great Bearded One (a.k.a. "Punk" and "Charles" and "#Chuckfit") started telling some of my grubby buddies and me how much of what to eat. I've had my moments of food freakishness over the years, but I've never tracked what I ate or weighed what I ate or cared how much the scale said I weighed. I've never needed to because I have always been healthy by medical standards. I agreed to try things his way--y'all have no idea how huge that is--in the hopes that I would notice some benefits in the performance department. Boy have I ever! Not only have I noticed positive changes in my performance, prepping all my meals for the week has given me more time to soak up some actual sunshine. And I can take pictures of all my pretty food to share!

The other thing that was holding me back until recently was a fear of the rain. Not every day can be full of sunshine. When the clouds roll in and the sky is dark as far as the eye can see, I find it very hard to brace for impact and weather the storm. I would rather put a cloche over my tender shoots and protect them from the onslaught of the falling sky. I have a fear of failure. I would rather hide under a glass case than get pelted by painful drops of experience that cause me to bend under the weight. I would rather avoid being quenched with a life-giving gift of lessons learned than risk drowning by root rot. Sometimes it's easier to say you've had enough for the day than to try one more time. Sometimes it's easier to be tired than to try to process another cue or hear the disappointment loosely disguised in the encouraging words from those around you. Sometimes I am afraid too much rain will erode all my amazing soil.

Earlier I mentioned that I've been working hard on developing myself as a coach and an athlete. I guess I've also been honing my goal-gardening skills. I've been trying really hard to soak up all the sunshine and be thankful for all the rain. I've been trying to appreciate my soil and not worry that it will wash away from me but instead will work to keep me planted firmly where I belong. On September 28th I snatched 115#. Less than a week later on October 3rd I got a ring muscle-up. I was able to cross off both my goals within the first two weeks of fall. Harvest celebration indeed. Time to plan for next year's garden.

Please don't look at me in this video. It's all about the amazing dirt.

Now he GETS it, and life will never be the same.

Syncope is a real party crasher. Total game changer. Life in our house will never be the same.

I was coaching the 6:30 PM class Monday night when the door to the lobby opened and The Great Bearded One (my husband) began frantically waving and calling for me. Considering I had fourteen athletes back squatting in the gym and he was calling me away, I knew something was wrong. I walked into the lobby to see Captain Awesome (my son) trying to stand up and starting to cry. There was a large wet spot on the floor. Captain Awesome reached for his shorts, confused, then began to cry harder. His nose was bleeding. There was a woman sitting on the sofa in the lobby that I didn't know. A client of The Great Bearded One. She looked at Captain Awesome and then at me with a sympathetic "Bless his heart!" expression.

Captain Awesome had face-planted. He had passed out while in a seated position, slumped and then slid forward onto his stomach, and lost control of his bladder. The Great Bearded One and his client witnessed the whole thing and said Captain Awesome was out cold for about fifteen seconds. At first The Great Bearded One thought his son was fooling around but quickly realized that was not the case. By the time I joined them in the lobby, Captain Awesome was coming around but was very confused and more than a little embarrassed.

The Great Bearded One and I are getting pretty good at tag teaming our way through crisis mode. All the while taking turns, we: usher Captain Awesome into the bathroom, try to navigate the clothing situation, clean the floor in the lobby, figure out who will be taking the kid where and who will finish coaching class, try to calm the kid and stop the crying while reassuring him that no one is upset and none of this is his fault, keep managing to eyeball the athletes in the gym most of the time, convey a brief synopsis of the situation to a couple of key athletes who can help us mediate the situation, discover his nose was not bleeding from the inside but from rug burn on the outside, find a temporary solution to the clothing situation, finalize roles and out the door to urgent care Captain Awesome and I go. At this point Captain Awesome's only concern is a change of shorts...he has let go of the confusion and most of the embarrassment. Pit stop at the Dollar General on the way to urgent care for a $7 pair of athletic shorts and a $5 three-pack of underwear in his size (Who knew?) and we arrive at urgent care right at 7:15 PM. The intake nurse sends us directly to the ER, just a few miles down the road.

By 7:45 PM we were in a room and had told the story at least five times. By the time The Great Bearded One joined us the doctors had ordered an EKG, CT scan, chest x-ray, and urine and blood work. Captain Awesome is a seasoned pro when it comes to EKGs. Everything else seemed to be making him quite nervous. The Great Bearded One coached him through the urine collection and I held his hand when they drew blood and went with him for the CT and x-rays. He was very brave through all of it. On the way back to the room I overheard the conversation at the nurses' station. They were transferring us to Brenner's, the local children's hospital attached to Wake Forest Baptist Hospital. It was going to be a long night.

We agreed that I would go home and take care of the dogs and pack a bag for the three of us. I left home for Brenner's around 11:30 PM and met my family in the ER there right around midnight. After telling the story another five times, another EKG, and having the nursing staff scrounge for anything Captain Awesome might be able to eat (he totally missed dinner), we landed in a room on the sixth floor somewhere between 2:30 and 3:00 AM. After getting Captain Awesome all wired for sound and telling the story yet again to two residents that were strangely reminiscent of Doogie Howser, we were told to expect Captain Awesome's cardiologist in the morning and The Great Bearded One caught an Uber back to his car and went home to care for the dogs and handle the late morning classes at the gym.

Captain Awesome and I tried to finally get some rest. The hospital's helipad was basically right outside our window. A flurry of noise and activity when a helicopter landed there prevented sleep before 4 AM, but I must admit it did add a whole different perspective to the situation.

The cardiologist woke us up around 8:30 AM and went over a whole bunch of worst-case, best-case stuff with me while Captain Awesome appeared to be absorbed in a video game. I knew better. That kid hears EVERYTHING. Always has.

So now I'm going to skip ahead an echocardiogram, a collaboration between doctors, and a few hours and land us one floor up in the hospital's outpatient cardiac care unit, a place we've been a couple of times before for routine exams. Captain Awesome suddenly had to go to the bathroom "really badly" right before the nurse was going to put a telemetry patch on him that he would wear for the next two weeks. He was in the bathroom quite a long time. Finally he emerged, the nurse put the patch on his chest, and we were homeward bound.



We were all home and all exhausted before 3 PM. Captain Awesome kept touching the button on his telemetry patch as if checking to be sure it was still there. He complained that he would have to wear it for the first day of school because you could see it through his shirt. He fidgeted and paced and whined and complained. I contributed his behavior to lack of sleep. I offered to watch a movie with him in my bedroom with the hope that he would relax and we could both take a nap. He agreed and we settled down and found something to watch.

There was no rest for the weary. Captain Awesome went to the bathroom five times in thirty minutes. He paced. He cried. I tried very hard to remain patient. Finally I more or less told him to stop moving around and go to sleep. He looked right at me through his tears and said: "I CAN'T! I don't want anything bad to happen! Why did this have to happen to ME?" Those words might as well have been a Mack truck rolling over my rib cage and squashing every bit of air out of my lungs. Oh, no. He finally gets it.

Captain Awesome was born with Tetralogy of Fallot, a congenital heart defect. He had open-heart surgery when he was just five months old to repair three of the four defects present in his infant heart. He has always known he had a special heart and needed to see special doctors regularly to monitor his progress. He has always known he gets tired a little faster than most other kids and that that's okay. His pale white "zipper" scar on his chest has always made him stand out as a Heart Warrior. He has heard us talk to other adults about the definite surgery and possible additional procedures at some point in his future. He has always known, I just don't think he fully understood until now.

I learned when he was five months old that the only way I would make it as the mother of a Heart Warrior was to pray and to trust. Oddly enough, in that moment in my bedroom, I realized we were four days shy of the ten year anniversary of his open heart surgery. For ten years prayer and trust have pulled me through. Surely it would help Captain Awesome as well. I told him that the only reason I could figure this was all happening to him was because God had big plans for him. I asked him if he thought praying might help him feel better. He said he thought it would. He came and sat cross-legged on the bed next to me and obediently closed his eyes and bowed his head, his hands clasped in his lap.

[Side note: I am habitually silent when I pray. For as much as I talk, my prayers are typically private. I am always happy to defer to my friends who are "prayer professionals" whenever a prayer is to be spoken aloud. I admittedly said a silent prayer asking for the right words before I actually said anything.]

Captain Awesome was very patient with me as I paused and reached and fumbled for the just right things to ask. We prayed for guidance for us and the doctors. We prayed for as strong a heart as possible. We prayed for total healing when the time was right. We prayed for Captain Awesome to have the courage to ask the questions he wanted to ask and the means to understand the answers. We prayed that he would always know how loved he was and that none of this was his fault. We prayed for acceptance. I added a last silent prayer of my own that I could accept that things would never be the same and that I could find the words to help him put one foot in front of the other when necessary.

It didn't happen immediately, but gradually Captain Awesome did calm down. He slowly got still, his eyes got heavy, and then with one hand touching his telemetry patch and the other holding one of my hands tight up under his chin, he drifted off into a deep sleep.

Stark awareness for CHD Awareness Week

In the United States, two times as many children die from congenital heart defects annually than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD research.

Continue reading at your own risk. This is very lengthy. If you're a parent, I recommend having tissues nearby. This was originally posted in 2011 as a Facebook Note to promote CHD Awareness Week. As February 14th, the last day of CHD Awareness Week each year draws near, I thought it fitting to share as I've made a few Facebook friends since 2011.

I'm certainly not taking anything away from pediatric cancer research or its importance. In fact, my husband, the father of a "heart baby" is one of the biggest supporters of St. Jude I've ever met--and yet therein lies the problem. Just the words "pediatric cancer" immediately bring to mind images of children that are bald at the wrong stage of life, typically a little thin, maybe a little sallow, almost always trying to muster a smile. Sometimes you might think of machines and IV lines and wonder about all the things these kids are going through. What images do the words "congenital heart defect" bring to mind? Probably nothing before now. Maybe you have heard of someone who has a heart murmur or remember the kid that could never participate in gym class or sports but didn't look like they had anything wrong with them. Maybe you've seen the scar on an adult's chest after they've had open heart surgery. Well, here are a few of the things the words "Congenital Heart Defect" bring to mind for me:

I remember getting the call from my OB/GYN saying that they were referring me to a perinatologist because one of my blood tests came back "off" and they wanted my baby to have a more thorough ultrasound screening to rule out any problems. I was petrified. I was also in-between dog training appointments.

I remember the look on the sonographer's face at the perinatologist's office and I remember her saying "Everything is checking out, but I don't like what I'm seeing with his heart." I remember just an hour later talking with the perinatologist and his recommendation that we have an amniocentesis done so we would know whether or not Parker had any chromosomal abnormalities. He gave us a referral to a pediatric cardiologist where we would be going for confirmation of the diagnosis. I remember being mortified when he also gave us the option to terminate the pregnancy.

I remember going to CHOA-Egleston to meet with the pediatric cardiologist. He confirmed the diagnosis of Tetralogy of Fallot and went about describing the four different defects that make up this particular CHD. I remember him telling me how successful the surgeries to repair the defects are, how the entire process would unfold, and how he would basically live a normal life outside of his hospital stays. But the two things I remember the most about that day were being told that my child would probably never play competitive sports with the exception of maybe golf, and the real kicker--"You just can't let him cry." Those words, said in that matter-of-fact tone, will never be forgotten. Allowing my son to cry before his defect was repaired could have ultimately sent him into cardiac arrest.

I remember enduring the amniocentesis and trying so hard not to cry. I think my husband probably remembers the grip I had on his hand. That was a big needle, and it was painful, but I think it hurt even worse because I was an emotional wreck. I remember getting a call (I was in-between dog training appointments again) a few days before Thanksgiving saying that the results from the amnio were good. I remember the relief I felt knowing that there was a lot that could be done to fix his heart, but they couldn't fix chromosomes. I also remember thinking that I could totally deal with one problem or the other, but how hard it would be to deal with a heart problem *and* a chromosomal abnormality. I remember the wave of despair that came over me a few minutes later when the doctor's office called me back to say that they were sorry, but only one of the test results had come back and that we would have to wait until the next week to learn the results of the other test. I remember calling my friend Lauren and bawling like a baby. Thankfully the news after Thanksgiving was good.

I'm going to skip ahead nearly a year now, with the only bridge to fill the time gap being that Parker handled his arrival with grace and aside from my getting very little sleep for five months to keep him from crying, and a lot of various doctor appointments, his first five months were happy times. The time for the surgery was drawing near, and wouldn't you know it, life throws us a curve ball. Charles was about to be changing jobs, and therefore insurance. Rather than fight the pre-existing condition possibility, was there any way we could have the surgery sooner versus later? Our angels came through for us.

I remember family visiting Parker and us before the surgery. Those few days were odd. Would it be the last time they would see him? Bittersweet is not a poignant enough term. The possibility did exist that we were sending our five month old baby into an operating room to die.  

I remember holding Parker with Charles in a tiny room at the hospital right before they came in to take him back for surgery. They sedated him there so that he was able to fall asleep in my arms before going back. I remember thinking "Is this what he'll look like if he dies?" I remember hating myself for even allowing the thought to cross my mind. I remember doing a lot of praying. For the first time in a long time I felt like I was having a real conversation with God. I remember feeling like there was a comforting hand on my shoulder and a whisper of "All is well." in my ear as I was handing my baby over to strangers so they could cut him open and cut his heart. Change it. Fix it? Was it not sweet and pure and right and good?

I remember sitting in a waiting room at the hospital with numerous other families. There was a phone in that room that would ring every time there was an update on one of the children in surgery. Parents were taking turns answering the phone and we would call out the last name that was requested by the OR on the other end of the line. Most of the time the news was good...

I remember the surgeon coming to find us when Parker was out. They couldn't save Parker's pulmonary valve, so he has a definite murmur that remains. He'll have to have at least one more surgery, hopefully when he's 18-20 years old, to replace that valve and resect the tissue along the ventricular wall for a second and (please, oh, please) final time . I remember not caring about that so much because I was so grateful that he was alive. I remember wanting to hug the surgeon, but I wasn't sure what etiquette surrounded the situation. Looking back, etiquette probably isn't at the forefront of anyone's mind on that floor at Egleston.

The Cardiac Intensive Care Unit (CICU) is like an alternate universe. For anyone that has seen The Matrix, I remember recalling the scene where Neo "wakes up" connected to all the wires and everything around him is unlike anything he's known before. Babies go into CICU in a medically induced coma; trust me it's for the best. There are wires and tubes and blipping machines and nurses staring quietly at monitors everywhere. And it's dark. Even in the middle of the afternoon it's much darker in there than the outside world. Buried under wires and tubes and tape and blankets and guardrails are the most fragile looking creations you've ever seen--so still and quiet--with any sounds they might be making masked by breathing machines and IV alarms and blood pressure alarms. Many of the babies in CICU are only a day or a few days old. Some, like Parker, only a few months. I remember seeing Parker there for the first time. I didn't cry; not then anyway. I remember that as much as it hurt me to not scoop him up and hug him and hold him close, I didn't do it because I didn't want to hurt him.

In CICU, there is one nurse assigned to one baby at a time. I didn't like our first daytime nurse in CICU. She just rubbed me the wrong way. Looking back, (my National K-9 comrades are the only ones who are going to understand this) she was my glove. I projected all my fear and frustration and anger and every other negative emotion onto this poor woman. Parker's night nurse in CICU was my stick, I liked her a lot more.

I remember lots of awful things about our time in CICU. I remember all the parents being kicked out on numerous occasions because babies were crashing, babies were being put on ECMO (if you don't know what that is, Google it), and also because doctors, surgeons, and students were making their rounds and you can't be privy to another patient's information--even though you already know full well why they're there. I remember being tired but not wanting to go home. I remember sleeping on cots in a little room on the opposite end of the hospital because we didn't want to go home (you can't sleep in CICU). I remember communing with other parents in the parent lounge just down the hall. I remember a few of our friends stopping by to see us and feeling bad (why?) that Parker wasn't able to interact with them and Charles and I weren't very entertaining either. I remember a young father walking in, looking bewildered, and finding his brand-new baby girl hooked up to all sorts of stuff. He had driven over from Alabama to be with his newborn without his wife. She had to stay behind because she had delivered their baby via c-section. They were unaware that their baby girl was going to come into this world with only half a heart. I remember seeing his wife being brought to the floor in a wheelchair and knowing immediately who she was. I remember crying inside for the parents that had to leave their babies to go to work and being thankful that I didn't have to--even though, as the nurse told us, we had the most expensive and well-qualified babysitters on the planet. I remember different babies suffering different and various complications.

I remember being told about Parker's complication. Chylothorax. Basically his lymphatic system was injured during the surgery and was leaking into his chest cavity. It happens after about 30% of open heart surgeries and it happens in children and adults alike. Certainly not the worst complication imaginable, and not the worst we saw, but in one fell swoop I could no longer do for my son the main thing I had done to keep him alive (and keep him from crying) for his entire life to this point. I could no longer feed my baby. He had to be put on a special fat-free formula for six weeks to allow the lymphatic system time to heal. I've since learned that it is now possible to keep a baby with Chylothorax on breast milk after it has been skimmed, thanks in part to my family and our willingness to participate in the very beginnings of some clinical research. It's amazing how quickly things progress.

I remember moving to the "Cardiac Step-Down" unit and what a celebration it was. Parker had a private room with a cot for Charles and me to sleep on (well, poor Charles was on a pad on the floor), and there was even a bathroom with a shower and a TV. I remember being so sad when a family that had been moved to step-down was sent back to CICU. I remember praying that didn't happen to us.

Now Parker was aware, but he was not entirely alert. He was certainly not himself and still on pain medication and he still had a chest tube in. He would have to go in a little red wagon (complete with oxygen tank and external pace maker) every morning with Charles and a nurse to get a chest x-ray to check on the Chylothorax. I went once. I remember the x-ray technician commending me on a job well done, holding him in the proper position for the x-ray. I remember thinking that I was merely defaulting to my vet tech experience, because if I had thought of how much pain that was probably causing him I wouldn't have been able to do it.

I remember a lot of vomiting. Parker wasn't dealing well with the formula (neither was I, for that matter) and was vomiting with nearly every feeding. We were lucky enough that at five months the doctors decided it would be okay to introduce some fat-free baby food to him so he was getting some form of nutrition. Gerber Stage 1 peas in cardiac step-down was Parker's first taste of solid food. He ate it voraciously. He contracted horrible, painful diaper rash from the formula and veggie introduction all at once. He still vomited the formula, but he would keep veggies down. ARRRRGGGGGHHHHH! He also did a lot of vomiting when they took him off morphine and put him on Tylenol with codeine. Now we know he has a codeine sensitivity.

I remember my favorite nurse from step-down, Dani. God Bless that woman. She always smiled, even when she was helping me change sheets and clean up vomit and weigh diapers. She made me feel better when she realized how nervous I was about them taking Parker's lead lines (external pacemaker) out. She was happy for us when Parker's chest tube came out; not as happy as we were, but she was happy for Parker because that meant he was going home soon!

I remember visiting another heart mom on the floor whose son (also Parker, same age, same CHD) was having a very difficult time coming off the pain medication. He was moaning and crying and was just so pitiful. She was very frustrated because her insurance wouldn't cover any more days in the hospital and the kids had to be off pain medication (with the exception of OTC Motrin/Tylenol) to leave. Her heart was breaking and mine was breaking for her and for her son. I remember the social workers coming to visit her and coming to visit us to let us know what options we had to pay for all of this stuff. We didn't qualify for most of the programs, but I remember thinking, "That's what insurance is for, right?"

I remember having to take classes before we could leave the hospital. We had to take classes on infant CPR and emergency first aid. We had to be *taught* how to pick up, hold, and bathe our babies. We had to be taught how to administer blood pressure medication, pain medication, Lasix, and in some cases (like ours) formulas and food. I remember, although I wouldn't have admitted it before now, being petrified to take him home. I remember how happy I was to go home with him, and how happy I was to see my dogs. Those ten days felt like a lifetime.

The next six weeks at home were all about medication, sleep, vomit clean-up, feeding, caring for the rash that resulted from the introduction of solid foods and a nasty formula all at the same time, follow-up doctor visits, and a general sense of relief. The following year was all about dancing around bankruptcy trying to pay for all the bills. Yes, we had good insurance!  Thankfully we had *a lot* of help from family, but I know a lot of heart families who aren't so lucky.

Here we are. Parker will be three next month and for now you would never know what he has been through unless you saw his scar or heard his story. We have recovered financially and writing this has proven to be a great part of my emotional healing; pretty cathartic, actually. I can't speak for Charles, we honestly don't talk too much about it all, but I love him so much more than words can say, and we agree that we have the best kid in the world. He's smart, he's active, and in my opinion quite handsome. He is very wary--nearly terrified, of anyone wearing a lab coat or scrubs, but otherwise he is currently no worse for wear.

The saddest part of this whole story is not anything we went through, or anything we will go through in the future, but that in the grand scheme of CHDs, our family is one of the lucky ones. Our son is alive. He is probably only facing one more surgery. Charles and I have a strong marriage, and we have outside support. There are so many families affected by CHDs that can't say all that.

If you have taken the time to read this in its entirety, I thank you. You now know why CHD Awareness Week is important to me. Feel free to share as you see fit, and please remember, as I do, that the biggest scars are the ones you can't see. Support CHD research as you are able.

The Culture of the Folding Chair

I have big plans for the coming year. I plan on working really hard at creating a new culture concept for my family and those we interact with routinely. The big picture is that I want to reign in the pervasive need to be a consumer and shift toward needing to create. The small picture that I am going to use to fuel the movement in my mind is a simple one: a folding chair.

A dear friend told me once about a mission trip she took to Nicaragua. She said that one of the things that struck her the most was the way the people treated visitors to their homes. The areas of the country they were visiting were exceptionally poor, with residents living in basic dirt-floor shacks and spending the majority of their days trying to survive and feed their families. Regardless of how little they had or how little they had eaten, when a visitor came by their home they stopped what they were doing and brought out the folding plastic lawn chairs. They all sat together in the meager accommodations and talked. When the visitor left, the folding chairs were put away and the struggle to survive resumed. Instead of focusing on what they did or didn't have to offer from a material perspective, these people focused on their visitors and freely offered something far more precious: their time and attention.

My friend may not realize this, but she lives this way herself. She may have a home with carpet and tile and wood flooring and she may have creature comforts that the people of Nicaragua can't possibly imagine, but she will drop whatever she's doing and invest time and attention (that she doesn't have to spare according to the standards of most Americans) in anyone that genuinely asks it of her. And you know what she creates when she does this? She creates relationships that have meaning to both people. She creates a feeling of self-worth in her friends. People that interact with her for any amount of time feel valued and loved. She teaches me daily by example that people are worth creating meaningful relationships with.

There is another image that comes to mind when I think of a folding chair. This image is of my husband, who owns a CrossFit gym. I have many memories of him bringing a folding fabric chair into the middle of the gym floor to either sit and watch (read: coach) others working on their weightlifting or sit to rest between his own weightlifting sets. My husband has always been kinda competitive by nature and until recently wasn't known as being particularly patient either. I have watched him over the last few years create his own coaching style and help athletes create the best version of themselves possible. He teaches me daily by example that while it isn't always easy, and you aren't ever finished, working to create the best version of yourself possible is a worthwhile investment.

Interestingly enough, my husband (from this point forward referred to as "Punk") lost his jobby-job in July. He was a District Manager for a large big-box sporting goods chain. He was great at his job. His job provided us with enough money that we were at a stage of life in which we didn't lack anything we needed or really wanted. The one thing Punk's job didn't provide for our family was a lot of time to be together. We started to use "stuff" as a way to fill the void. Supporting the idea of consumerism that supported us, I suppose. Thankfully, some of the void-filling stuff came in the form of a CrossFit gym and all the equipment in it.

Punk didn't have much time to invest in the company he created prior to July. He was so busy being consumed on all sides by consumerism. When that fateful day came at the beginning of summer, he suddenly had a lot more time on his hands. He spent the first two months or so sending out resumes and looking for the next best thing that wouldn't require uprooting our family from North Carolina to California or Mississippi or Texas or some other might-as-well-be-a-foreign-country place. While they aren't plastic or fabric or folding, we pulled out our dining table chairs almost nightly and had the most meaningful conversations we'd had in quite some time. I'm not sure exactly when it happened, but it happened that the resumes were no longer being sent. Phone calls from recruiters were no longer being entertained. Somewhere along the line Punk decided that he would be happier running the business he created and signing both sides of his check than going back to the hyper corporate world of retail consumerism. I would like to think that our dining table conversations played a part in that decision somewhere along the way. I am thrilled that THIS is now our plan A with no fallback plan in sight. I am excited to see where this journey takes us next and grateful for all the people the gym has brought into our lives. Punk is teaching me daily by example that something worth creating is something worth fighting for and deserves to be nurtured.

My last mental image of a folding chair is the most recent. I tend to enjoy right-brain activities. I KNOW, right? Who knew? My problem is finishing them. I have exactly nine blog drafts at the moment, an unfinished painting on my easel, the perfect puppy-to-be in mind, and notecards on my computer that I've been needing to finalize and send to the printer for...I dunno...a couple of years? I have had multitudinous diversions keep me from my artistic pursuits over the years. Some of them have been important and others admittedly not so much. I recently surmised that I might be inclined to sit at my easel for longer periods of time if I had something more comfortable to sit on than the hard wooden swivel stool I had been using. Turns out I was right. Wanna know what fit the bill? A folding pack chair! Much more comfortable. And portable. This year I want to focus on allowing my desire to create override my fear of no one appreciating my creations. I want to teach myself daily, by example, that creativity is not bound by proximity and that if the creation satisfies the creator--that is enough.

If, in my process this year, one person is positively impacted by a concept, relationship, feeling, art piece, or any other creation of mine then that will be far more valuable than any cost of any good required to create any of it. So now I challenge you: where can you fit a folding chair into your plan this year? What will you use it to create?

Proud Parent

Today my child made me so proud I cried...in public...at the local YMCA. Yeah, yeah, yeah. Those that know me know that I am indeed a crier. I am an emotional individual and I cry for lots of reasons: happiness, sadness, giddiness, anticipation, love, loss, pain. Today I cried because of pride. Not pride in something my child achieved, not because of something he accomplished or won or was first at or best at or even recognized for. I cried because my child learned one of the most important life lessons of all and I am certain it is a lesson that will stick with him for the rest of his life. I am proud of him and I am proud of myself as a parent for helping him get it right, at least this once.

I know I'm biased, but I believe my son has many merits. He is very intelligent. He is loving and compassionate. His sense of humor is often precocious and he abhors failure. Unfortunately, his intelligence coupled with his fear of failure sometimes cripples his willingness to try. As his mother this can be maddening, especially in relation to things I really enjoy. Water sports are a prime example of this. Not that I didn't learn the hard way: my first memory of being in a full-size pool involves my mother wading in after me in jeans and a shirt as my head bobbed between barely above and barely below the water and I attempted to use one arm and one leg to "swim". I jumped right into the deep end with only wading pool experience on my resume. I never became a swimmer, but I can keep myself from drowning, and I love being pulled behind a boat at 35mph on anything. But enough about me.

My son has been enrolled in multiple small group swimming classes with the end result of all of them being that he still won't swim in deep water without some sort of flotation device. He doesn't like to put his face in the water. He doesn't like water in his ears. He wants goggles. He "can't" hold his breath. He gets tired. Blah, blah, blah. Yet he wants to go to the pool and to the beach. I understand that he will never be Michael Phelps, or even on a swim team for that matter. We're at the point now where it's almost on principle that he needs to get over himself and learn to swim. We've been to the YMCA near our house for most of his lessons, some of which were taught by instructors from the fancy High Point Swim Club. In an effort to switch things up and make things fit better into my schedule, I enrolled Captain Awesome in lessons at the YMCA close to the gym. New place, new people. Change is good, right?

Yesterday was the first class and all the children were evaluated by the instructors. Most of the kids are on roughly the same level, with some being more daring and competitive than others. There is one standout, though. He's way bigger in height and girth than the other kids and, by my best guess, about four years older. If his size wasn't enough to make him stick out of the crowd, his lack of experience and lack of bravery sure did the trick. At the end of the class the students were supposed to jump from standing into the deep end of the pool where the instructor was waiting to give them a noodle they could use to swim back to the edge and climb out. Captain Awesome was having no part of jumping from standing the first time and instead chose to sit down and shove off from his rump. The big kid followed his lead. The second time Captain Awesome managed to lurch into a belly flop after much hesitation. Well, the big kid was having no part of that. The other boys began to stand around behind the big kid and snicker and point. As I watched, my son joined in and the snickering became jeers of "Do it." The big kid simply shook his head and sat down. I was mortified.

I waited in the narrow hallway for my son to come out of the locker room and observed all of the YMCA campers interacting with each other. I remembered how mean some kids I knew growing up could be. I remembered the few times that I worked to stop meanness or rumors or be welcoming and inclusive. I realized that it wasn't enough. There were plenty of things that I turned the other cheek to as a kid, and even things that I participated in that were wrong. Mean. I knew a tough conversation was coming but I know in my heart that my son isn't mean. I want to raise a man with Christian values that leads by example and will defend others against all the mean.

It WAS a tough conversation. At one point in the discussion I brought up that Captain Awesome had just as hard a time jumping into the water as the big kid. I immediately felt terrible for the way I phrased it. There were a lot of tears, a lot of "I don't know!" responses and a lot of suggestions for the future. It was one of those conversations that leave both parent and child exhausted and tiptoeing around each other for awhile. I really don't like when I'm left wondering if anything that was discussed will stick. I don't like those tough conversations and I hate when they have to be repeated.

When we entered the pool area today, I collected Captain Awesome's t-shirt and shoes and sent him into the water with a reminder: Be an encourager. I settled down with my book to "read" and to watch and to wait.

Instruction was given on the different strokes and the children swam laps (with noodles) and played games. Finally, with ten minutes left in class, the students lined up to jump into the deep end. Captain Awesome didn't do too much better than yesterday, unless you want to award style points for the belly flop. The big kid stepped up to the edge.

I felt the anxiety emanating from this kid all the way across the pool. He was doing everything he could to muster the wherewithal to jump. He pumped his arms. He took a step back and then a step forward...and then a step back. He raised one knee high as though he was going to try a jump shot approach. Nothing worked. A few of the boys behind him started giggling and pointing. My heart was sinking. The next few moments changed everything.

Captain Awesome pushed his way through the group of boys, touched the big kid gently on the arm to get his attention, and said "You can do it." A couple of the other boys started scoffing "Do it!" Captain Awesome gave them a stern look, turned back to the big kid and smiled at him, saying "You CAN do it." loud enough to be heard over the others. Soon enough the other kids softened and became more supportive. The big kid didn't jump in from standing, but he did shove off from a seated position and swim underwater, holding his breath, which is more than any of the others had the gumption to do. Captain Awesome led the applause when the big kid surfaced.

I wanted to join in the applause, but I was too busy wiping tears from my eyes. The next thing I saw was the contagion of kindness sweeping the class. The boys were helping each other out of the pool, offering high fives and motivating each other. I was delighted. I AM delighted. And so very proud. The root word of "encourager" is "courage". Sometimes it takes courage to do what is right and encourage others to begin to realize their potential, even if that potential means they are swimming beneath the surface while you're still just trying to jump in. I hope that my son always has the courage to be an encourager and that I always have the courage to have those tough conversations. I want to experience more of the proud parent moments.

The Backup Date

February 5, 2016 was a Friday night, the night of my son's Valentine's dance at his elementary school. The automated phone tree voice message describing the event informed us parents that our children must be accompanied by an adult and that "students should dress to impress". I advised Captain Awesome before we headed to the school that the sweatpants he had on were probably not overly impressive. After a change of wardrobe for Captain Awesome and a phone chat with Captain Awesome's dad (my Punk), we headed out for an evening of, I dunno...(fun?)...something.

We arrived and Captain Awesome immediately started scanning the crowd for his BFF, the little ginger-haired girl he has been planning to marry since they were three years old. I asked if he was certain she would be there after a few minutes of fruitless searching among the sea of little girls all dolled up. He told me that she had said she would be there, so we got him some pizza from the concession area and sat down to eat it and wait. Among the ebb and flow of squealing kids and DJ announcements quite a few of Captain Awesome's other friends came up and spoke to him and two girls even asked him to dance. He very politely declined both invitations. Eventually he asked me to text BFF's mom to see if they were on the way. I sent the text and asked Captain Awesome if he wanted to dance with me or anyone else while we waited for a response. He didn't. He finished eating and we made our way to the edge of the dance floor where we watched and waited. Here is a picture of Captain Awesome and BFF at the dance in 2015:

Then the text came. BFF wasn't coming. She was at her cousin's birthday party. BFF's mom apologized to me and said she was sorry for not letting me know, she didn't even think about it. I wasn't worried, but Captain Awesome was suddenly looking far from awesome. He hung his head so low and suddenly seemed much smaller and younger than an almost eight-year-old. I tried to lift his spirits without making a big deal of the situation. I offered again to dance with him. I told him we could find the two girls that had asked him to dance before. Nope. I told him we could leave and cut a rug at home if he wanted to. "You mean dance in the kitchen like we did that one time?" Yep. That was exactly what I meant. Finally a smile as he grabbed my hand for the first time in a long time and we headed out of the building.

On the way home I suddenly remembered my freshman year in college. Homecoming game. I didn't have a date and while I never would have admitted it at the time, I was pretty bummed about it. My friends had dates but I did not. I remember getting a call from my dad a few days before the game telling me he was coming. My dad is a football fan, and I'm not even sure he was aware of my being dateless, so I don't think it was a matter of him trying to be my knight in shining armor. But even with my head throbbing and my eyes bleary the morning of the game (it WAS my freshman year in college), when I saw my dad he may as well have been dressed in chain mail and carrying a gleaming sword. We went to the game together and had an enjoyable afternoon on campus. He didn't stay long after the game was over and I still had to watch my friends leave for the evening festivities with their dates. Because my dad had been there, though, it suddenly wasn't such a big deal.

Captain Awesome and I arrived home and did exactly what we set out to do: we cranked up the music in the kitchen and danced ourselves silly. We laughed and twirled around and busted out some moves we certainly wouldn't have used on the dance floor at the school. I am not sure how Captain Awesome thought that night was going to turn out, or even what expectations an eight-year-old boy has when he thinks about a Valentine's dance at school, but I'm pretty sure dancing in the kitchen with his mom wasn't what he had planned. For me, though, that night turned out better than I ever could have dreamed it would. I know the time is not far off when I won't be able to make things all better that easily. Soon enough Captain Awesome will not want to be caught dead dancing in the kitchen with his mom. I just hope he always knows in his heart that I will ALWAYS, GLADLY be his backup date.