Stuck in the middle with you...

"It's a middle-of-the-road defect with a middle-of-the-road presentation." Those are the exact words our son's cardiologist used to describe his congenital heart defect before he was born. He hit the nail on the head with that one, for sure. Everything related to Parker's Tetralogy of Fallot has been smack dab in the middle of the CHD spectrum, and smack dab in the middle of the ToF spectrum. I've talked a lot about how I handled the diagnosis, how the surgery went and how Parker's recovery was. I haven't talked too much about how life with him is NOW. February 7-14th each year is Congenital Heart Defect Awareness Week, so I suppose now is as good a time as any to talk about being stuck in the middle.

I am grateful every single day that my son is as healthy as he is. He's intelligent, active, tractable (at least for his teachers at preschool), and has a great sense of humor. Sometimes I think to myself: "They told me CHD kids were tired all the time...what's up with THIS?". Yet, there are days when I can't help but wonder if he wouldn't be so tired if he had a pulmonary valve. There are days that I can't help but imagine how much more quickly he would recover from the common cold if his blood was fully oxygenated. There are so many children with CHDs that can't do half what Parker does everyday. There are just as many who do more.

Parker had his first open heart surgery when he was five months old. OHS at five MONTHS! That's crazy for anyone not familiar with the reality of heart defects. However, there are infants out there who have their first open heart surgery when they are five HOURS old. Some children born with heart defects never have to have surgery. Recovery for Parker after surgery had one major setback (chylothorax--common after OHS, took six weeks to recover from that, but he was able to recover at home after his initial ten days in the hospital). Recovery for other children after OHS requires things like ECMO and defibrillators. Recovery for some means home from the hospital after three days.

One down, one to go. That's how I look at Parker's heart surgery "schedule". God willing, he will have to have only one more surgery. God willing, the medical technology will be such by the time Parker needs a pulmonary valve and ventricular wall resection that they can do it through a catheter and no additional OHS will be required. It could be that he needs to have a valve put in next year, in which case it will be OHS, and it could be that he makes it until he's 12 (who knows at that time), and it could be that he doesn't need anything until he's 18 and I imagine by then they'll have the catheter procedure all worked out. Some babies have had four open heart surgeries by the time they're Parker's age. Some babies have one and they're done.

Even activity restriction for Parker is middle-of-the-road. Currently all his activity is self-limited. This means that as long as we let him rest when he gets tired, he can do anything he wants to do. We were told when I was pregnant "He'll never play professional sports...well, maybe baseball or golf.". I have already resigned myself to not allowing him to play soccer or football because I don't want him to fall in love with a sport he can't play later on. Yet, selfishly I have let him participate in a fun run with his daddy (cardiologist approved) and now he's taking karate, which he LOVES. I know he will be able to continue karate if he chooses to, just not with any competitive sparring or with a sensei that is too rigid.

Our son doesn't look sick (unless he IS sick, then he looks really sick) but he has a pretty big scar for such a little dude. Until recently this never posed a problem. Once, last summer, I took Parker to a  local water park with some friends. There were two older boys with our group. One of the boys, pointing to Parker's chest, asked Parker how he got his scar. Parker didn't know how to answer him. The older boy asked again, more slowly and louder, as if comprehending or hearing the words were the reason Parker was speechless. I thought my son might burst into tears at any moment. Eventually the boy gave up. We began coaching Parker that very day on how to answer what will likely become a lifelong barrage of questions from his peers. Another time last year my husband was left holding the bag. My husband and my son were waiting on me to get my hair cut and they were goofing around a bit in the lobby area. I guess my son's shirt was somehow forced high enough that another man seated near them saw my son's scar. The other man casually said, "That's a pretty big scar for such a little boy.". I understand that people are curious, but how much do you really divulge to a complete stranger that you will likely never encounter again? At the same time, I understand that some parents of children with CHDs that are Parker's age have to constantly answer questions such as: "Goodness, did s/he have grape juice with breakfast?" because their child's lips are blue from lack of blood oxygenation. Lots of parents never have to worry about either.

Then there's US. The family unit. The crazy dynamic that is our lives. My husband is a scheduler, and I tend to go with the flow. My husband has strong opinions and sees everything in black and white. I'm more easily swayed with a convincing argument, existing in a constant state of flux while sporting my rose colored glasses. Poor Parker doesn't stand a chance. Yet again, he's stuck in the middle. There are times, as awful as it sounds, that I think I might prefer an extreme. With extremes can often come clarity. Black. White. In between the extremes there's only...gray. If you ask anyone to define "dreary" you'll likely hear the word "gray" somewhere in the mix. Don't get me wrong, my life is anything but dreary. My husband is my best friend. My son is nothing short of awesome. Sometimes, though, I feel as though I exist within the gray area. Is my son sick or healthy? Should I allow him to try that or shouldn't I? Should I tell his teachers and every single school official and person of authority and P.E. teacher and doctor and dentist and friends' parents about his heart or am I being over cautious? Did he catch a cold at preschool or is that cough indicative of congestive heart failure? Is he panting for dramatic effect after one lap around the yard or should I call the cardiologist? Too. Much. Gray.

I've been a part of a parent matching group via Mended Little Hearts lately. They send me the names and basic information of heart parents that are looking to reach out for support from others in similar situations. There is no requirement to respond to any of them, and not all the parents that I reach out to respond back to me. It's like the Match.com for parents of cardiac kids. I don't reply to every single match request. Sometimes I feel as though I have no way to relate to what some of these parents go through. I do, however, respond to each and every single Tetralogy of Fallot parent that comes across. I just have to check myself to keep from starting in on song lyrics.

Tryin' to make some sense of it all,
But I can see it makes no sense at all.
Is it cool to go to sleep on the floor?
I don't think that I can take anymore.

Clowns to the left of me,
Jokers to the right.
Here I am, stuck in the middle with you.


--Steve Miller Band, Stuck in the Middle With You

In celebration of being a "heart mom", my husband bought me the necklace I'm wearing here from geauxsportsjewelry.com and while I don't wear it often, this week is definitely an exception...

Remember that you never know what someone else may be going through. The biggest scars are the ones you can't see, and sometimes people are stuck smack dab in the middle of something.

**Update 2/6/2017

Parker, aka "Captain Awesome" is still doing very well. He no longer takes karate and sports haven't really proven to be his thing. He does enjoy drumming and is becoming pretty skilled at it. He likes to ride his skateboard and bike when the weather is warm. He also dabbles in CrossFit from time-to-time when the mood strikes him; we honestly don't push him to do it much. He's in the third grade and has been a straight "A" student so far, even though he complains about school and doesn't want to go.

I feel like he will overcome whatever challenge life throws into the middle of his road. His small, imperfect heart has a very tight hold on the hearts of so many other people.

I am immeasurably grateful that he is our son and we get to be his parents.

These last few years I have debated with myself about posting CHD Awareness Week information on social media. We are, again, stuck in the middle as a family. We have been blessed with far more fantastic experiences than traumatic with our heart warrior. We are not yet staring down the barrel of the inevitable procedures in Parker's future. For now, we get to enjoy our wonderful life as a family. Ultimately that is precisely why I end up posting stuff. If I can provide even one other mother with some hope for a future that can be so uncertain, then telling our story has meaning. When you're stuck in the middle it can be hard to know which way to look, which way to move. Sometimes you have to learn to be comfortable in the gray, learning to breathe through the pressure coming from all sides. You won't always be stuck in the middle. When it is time to move, the answer to "Which way?" is simple: forward. Always forward.

**I** am an Alpha Dog.

Tonight I watched the series premier and second episode of National Geographic's "Alpha Dog". Before reading any further, be aware that this post is being written on the same day that I conducted my first Puppy Preschool class in MONTHS. I worked with a precious, doe-eyed Cavalier King Charles Spaniel that was the ripe old age of twelve weeks. I do love, and always have loved, working with puppies and their owners to ensure that the first home is the dog's home for life. But ultimately, in my mind, there is no training like K9 training. It is the gauntlet, the CrossFit, the Iron Man if you will, of dog training. The only other thing that comes close is Service Dog training, but the handlers of Service Dogs are way easier to work with than K9 handlers.

So why is it that a bunch of overweight, out-of-shape, greasy dudes have their own television show and I do not? Maybe the same reason that a high-heeled boot, mini-skirt wearing "dog behaviorist" with an English accent made it in TV land. Puh-leez. I am well aware that I am not the only dog trainer that feels this way.

I have devoted the last five years of my life to my son. All-in, one hundred percent. I have done only a minimal amount of dog training in the last five years, certainly not any K9 training. The last K9 I trained was delivered to her handler when I was eight months pregnant. That was fun (and very off-balance). I have video... Am I proud of every K9 I have trained and put on the street? Unfortunately, no. But I do feel as though I provided a much better foundation for my handlers to work from than I saw in the television show I just watched.  I at least made sure the officers knew when to keep their hands off the dog!

These guys were training dogs to be special forces operatives and police K9 teams.  I have never trained a dog for the military, but it seems to me that the logical progression would be pet--sport dog--working dog--military dog--special forces dog.  Some of the dogs they were working with for the special forces team were "special" all right!  I get the need to have a dog with high drive, but seriously people, obedience is the foundation for everything.  Those dogs had NONE, and they were six and half weeks into their training program, about to graduate!  A dog that is noisy and bouncing around and focused on everything except the task at hand is an extreme liability in ANY working situation.  The trainers said they were worried about a particular team's performance and that they had some work to do.  "Some" was an understatement by my summation.  But hey, the helicopter was cool.  I wish I had a helicopter to train with.

Then there was the police K9 handler wannabe that got nailed by his dog.  Badly bitten.  Why?  The handler went to "pet" his dog, presumably to calm him down because he was so keyed up by the gunfire and activity going on around him.  One of the dog trainers that I admire most in this world, George Cockrell, puts it simply:  What you pet, you get.  You do not pet a dog that is displaying inappropriate behavior.  To do so is to positively reinforce that behavior in the dog's mind...or get yourself bitten.  The trainers ended up pairing the dog with an experienced K9 handler by the end of the show.  No acknowledgement was given--at least on camera--that there might have been something else going on.  Like a lack of handler instruction.  Or a lack of dog training.

One of the trainers commented that "these dogs come from Europe" when explaining the reasoning behind the decoys wearing head scarves in their training scenarios (which is one of the few things I saw that made perfect sense).  Indeed a lot of dogs are imported from Europe to enter into various forms of service here in the United States.  How do people blindly go along believing that these large overseas kennel operations send the cream of the crop over here?  That makes zero sense.  The best dogs from Europe stay in Europe until they are no longer of high value for whatever reason.  Those dogs are then sometimes purchased by Americans, but do you think dog training facilities that specialize in quick turnaround are the ones that choose to afford them?  That would be a negative.  Breeders, people.  Breeders are the ones who choose to afford those dogs because they will get their money back plus some.  Why not develop relationships with these American breeders and use dogs that are from the United States?  We used to do that.  I may not be overjoyed with every dog I trained for work, but the dogs I am most impressed with, and the K9s that have historically performed the best on the street, are the dogs that we chose and purchased from American breeders as puppies and raised and trained for the work, then trained the handlers to handle them on the street.  Oh, wait, I get it.  That would require actual TRAINING of the dog and the handler.

Some departments used to be amazed that our handler training program was two weeks long.  How did we accomplish this when everyone else required K9 handlers to be off the streets and away from their families and their homes for six weeks or more?  Simple.  The dog was already trained.  We didn't pick up a pack of dogs from the airport the week before a class was going to start and hope that they fit the bill.  We didn't keep our fingers crossed that the group of people we were going to be working with were natural dog trainers.  We had already been training the dog for months.  Sometimes this did not work out advantageously for us.  There were a few dogs that we invested a lot of time and money in that didn't perform as we had hoped and went on to live life as well behaved pets.  There were just as many dogs that were brought to us by law enforcement for training that disappointed us.  We often simply had to make it work to the best of our abilities with those dogs.  People want to help their local law enforcement and they "donate" dogs for K9 work.  Local law enforcement is appreciative and tries to make a go of it.  Sometimes it works, most of the time it isn't ideal.

Bottom line:  I am feeling a newly reignited spark in my chest.  My baby boy is growing up, he'll start kindergarten in the fall.  Other really cool changes are afoot here in High Point.  More on those later.  Maybe, just maybe, I can do some good doing something I love.  Anybody have a helicopter?