Archive for the ‘Family’ Category

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Rochester Kids Triathlon

June 17, 2011

This season Train-This has grown enough to be able to sponsor some races with money! That’s a really great feeling. This sport has given me so much….. I believe that each of us should give back in some way. A few times a year I volunteer my time, and so do the athletes I work with. It’s the Train-This gang that works the transition at the Musselman annually, we were able to sponsor Du The Lakes Duathlon, we happen to help the gang our at Score-This and I am very proud to announce we will be supporting the first annual Rochester Kids Triathlon!

Photography by Terry Wherry of Buffalo Photo CD

Here are the details!

Who: kids, age 6 to 17; maximum of 200 participants

What: A kids-only triathlon!  There will be 2 distances:

- 50 yard swim, 2.3 mile bike, 0.5 mile run

- 100 yard swim, 5 mile bike, 1 mile run

Where: Genesee Valley Park.  The swim will be in the pool; bike course on the bike paths (primarily the river trails); run on the paths and sidewalks west of the pool/rink parking area.

When: Saturday, July 30 at 8:00 AM; packet pick-up starts at 7:00 AM

Why: to have fun, promote healthy living, and introduce kids to the sport.

To register, please click here.

As I have told you so many times before, my son has been competing since the age of five. This is where he feels normal, he’s a kiddo ont he spectrum and he’s got a fan club bigger than he understands.

As a triathlon family we are ever so cautious….. we don’t want to push Luc into something he’s not interested in. For a long time because he is a kids who is considered to have special needs…. he was restricted as to what he could do. In addition to triathlon he just earned his yellow belt in Tae Kwon Do, just passed the Minnow level in swimming. He takes a kid’s agility class that has connected him with an amazing coach at the Ymca.

What is important…. is that he’s healthy. We as parents want him to play as many sports as he can and realize that fitness is lifelong. Too many athletes stop at graduation, or when they are done with college. We hope to teach our son that life is about being fit and being well, no matter what your circumstance.

He’s got a slew of medals in his room and on the days where things don’t go so well…. he has those to remind him of what he has accomplished. Triathlon, and sports….. you know I am a broken record on this…. they are metaphors for life.

The body is truly the gateway to the mind….. if we can find new limits physically…. be that running a 5K for the first time, learning to play tennis, hiking one of the peaks, then we are able to reach deep inside of our minds.

For Luc…… it allows him to be part of a world that isn’t always fair. The special education system, while it’s good, it’s also good at separation. There are the general education kids and then there are the kids in the self-contained classes (unless you are lucky to go to a school like we do, but getting there means a fight).  In triathlon…… in all of the activities we do…… we are all just people together.

That’s what the real world is. People of all abilities and sizes and shapes. There is no special classroom for that.

So rock on kids, get your triathlon gear on, and come out and join us for the 1st annual Rochester Kids triathlon. We definitely need volunteers, so please come on down and help. Think of it this way: volunteer for Ironman and you are out there forever. Volunteer for a kids race….. and you get to cry your eyes out doing it!

photography by Terry Wherry of Buffalo Photo CD

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Far out.

June 15, 2011

This morning I literally opened the drier and emptied it back into my suitcase… I am hitting the road again! Lake Placid, here we come!

It’s been a really great week, piggybacking on a really great weekend. I think one of the things I am most proud of is that I was able to kick down a wall that didn’t need to even be there. It’s easy for people to stand divided. It’s harder to stand united when it means saying the words that ego and pride can make it difficult to say: I am sorry. Imagine that…. two grown women, saying I am sorry. But at the end of the day we are all just a bunch of blokes trying to make the most out of our lives. So I am proud to support my friend Kristin White in her rookie year as a professional triathlete. Please check out her blog  and cheer her on, and allow the two of us to be an example for those of you who might have division in your life. Does it really need to be there? What’s the purpose? What does it accomplish?

How the heck did we do it? We had a pillow fight and no, there is no video :-)

As I was looking at my race files from Eagleman I began to laugh at myself. I consistently go about 20 minutes faster at this distance ona  hillier course 15 degrees cooler. In training at a HR of 165 my pace is under 8 minute miles. On a 90 degree day a HR of 165 gives me a pace per mile of 9+. I didn’t feel like the heat sapped me, I felt like I handled it well.

My husband pointed a few things out to me…. if you are so much better on different courses…. why do you keep seeking heat and flat? He also reminded me of the good old days before I developed this Ironman fascination. The days where I dominated the short course scene at the Score-This and Subaru Series. I was great at racing back to back and speed. I agreed, the good old days.

Then, he came up with a suggestion. Why… instead of aiming for a 7th Ironman….. why not get back to short course roots now instead of waiting for 2012? Why not race my heart out, do Syracuse 70.3 and see if I can grab myself a Vegas 2012 slot? Both of those 70.3 courses would suit me beautifully.

I thought for a moment. He had good points. Just the prospect of it excited me.

So I emailed Jesse, and he loved the idea.

So we’ve had some changes of plans…. good-bye Chesapeakman… HELLO RACING!!!!!! Check out my revised schedule right here.

Sometimes in our lives it takes someone standing on the outside to help us see that the direction we are moving in, is not the direction that suits us the best. Be that sport, be that life, be that wherever. Why put off something until tomorrow when I can do it today, why wait for 2012 to go back to short course when I can satisfy my need for speed right here and now?

Six Ironmans……. over the course of ten years….. I say that’s a pretty good run. With the ever-increasing cost of them I can’t say my heart leaps to do one again right now. In 2002 when I did my first it was around $300. I was wide-eyed and scared of it, I had a great run with that distance, but my heart is longing for the short and fast.

Who knows what 2012 will bring. Nationals? Vegas? Who cares. I just hope I am around to see 2012!

Right here and right now, that’s what I am living for. Short course and speed and already revving me up, redirected me, refocused me. I am so grateful for all of the people in my life who care enough to say hey jerko….. step back a second…. is this what you really need to do? Or do you need to do what you love? If there is one thing I am good at, it’s stepping back when prompted and saying… hey you know…. I didn’t quite think of it that way. THANK YOU.

I need to do what I love. I need to race. I need to kick walls down and love the community that has loved me so much.

And I need to get my bootie packing because on friday morning 30 athletes and I are going to go play in Lake Placid. Stay tuned….. there is always some kind of crazy thing happening when Train-This takes over the Alpine Air Motel!

Far out man!

 

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Two more sleeps

June 8, 2011

I love race week. I love the flutter in my heart, I love the feeling of being nervous, I love gluing tires on, I love shining up my bike, I love packing up my gear. Most of all….. I love being able to travel to a race with my husband. We don’t do many races together, or get a weekend away together. I’ve done Eagleman 3 times, he’s never done it, I am excited to show him the course.

Curt is always such a wild card in distance races. His last 70.3 was in 2004 (4:25 I believe!). Since then he’s gone a 9:53 in Ironman. I expect he will rock it. Part of his longevity in this sport is that he doesn’t over-do the Ironman or the 70.3 distance. Whatever distance he’s racing at though, expect Curt Eggers to come prepared.

I love Eagleman for so many reasons. Hot and flat is not my speciality, and that’s what I have chosen to work on this season. I have always suffered in the heat here, yet each time I have done this race it’s been 100 degrees. 86 degrees will feel awesome. I love swimming int he choptank. I love seeing the people I have been so fortunate to connect with throughout the years….. Eagleman always feels like a college reunion to me.

So I love that part of it.

I love the bike course. It’s fair in terms of wind, it’s crazy in terms of drafting (all flat races, are!), but this type of race as always comes down to the run. The run is out and back and there is no shade. It is not forgivng, it’s to the wall the whole time.

Eagleman….. to those of us who have been here a while … will always be known as Blackwater….. it still (I hope) has that grassroots feel to it. Those of us who have been round a while know what I mean.

I just. Can’t. Wait.

Everything is ready to go, I am feeling terrific in terms of taper…. it’s going to be nice to take a long drive down the east coast rather than hop airplanes all day. The weather is looking spectacular. And Eggers…. is ready to go.

Before I go however here are a few special pictures from the weekend, Luc in his race kit smiling so giant!!!!!! Thanks to so many of you…. who share in this journey with us. He knows how much he is supported, he knows how much he is loved and he knows how many people believe in him. It matters to him, and it matters to us. THANK YOU!

Next report from Cambridge Maryland!!!!!!!

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Concert

May 26, 2011

My heart was absolutely pounding for him. It was the annual spring concert, and a concert at our school is a little but different from a concert at a general education school. This is a really.big.deal not only to these kids but to the parents of these kids. It’s not easy for them to get up on that stage in an auditorium.

Sometimes…. on the difficult days I wonder if anything will ever be easy for these kids. Or for Luc.

for the first time ever, Luc had a solo. His class was singing “I Gotta Feeling!” by the Black Eyed Peas. Now not to sound like I don’t believe in my child, but Luc doesn’t quite carry a tune. One of his friends in the same chorus has a magnificent voice, the kid is gifted and usually gets the solo. Like I said this school is different. His friend graciously gave Luc a turn at the solo and Luc was more excited than I can describe. His solo was the “rap solo”.

This concert is such a big deal to Luc that he wears a shirt and tie (and so does his little buddy). The music therapists and teachers do an incredible job with all of them. What they are teaching them is so much more than standing on stage and singing a song. They are teaching them and encouraging them to be confident young men and women.

Here is one of the videos from the concert, I shot it with my phone as my flip batteries died.  Luc is in the white shirt and tie.(I am going to try to get the solo video up today!)

Of course they are adorable. Of course they are amazing. Of course we screamed and cheered. The cold hard reality of it though….. put this group into a general education setting and there would have been snickers from the audience. Some kids would have made fun of this group. Let’s be real.

That’s the part that hurts. We have one more year in this magnificent school, and then things change. We either go back to the school district into a special education classroom run by our current school…. or I pull a miracle and get him into the Norman Howard School. It takes a literal miracle to get the school district to send him there.

But…. I have some experience being the underdog. I have some experience with never giving up. I have some experience with fighting the fight.

So a miracle is what I will aim for.

Having a special education classroom in a general education setting is the way school districts make some cash. Do you know how much money each special ed student brings them? A good chunk. They don’t always get to interact with general education kids. In fact when Luc was in kindergarten….. the district had a giant kindergarten picnic. The special ed kids weren’t invited.

Chorus? Oh no. Not an option.

Sometimes they get to go to specials with “the regular kids”. remember when the special ed kids came to your specials? They were different. They were singled out.

What I love about Luc’s school right now…. there is no division. There is no separation. It’s one big school. Many kids have 1:1 aides. Some have trouble walking.

But there is just something about this place and those who work there that sets it miles above the rest. They allow these kids to be kids. They treat them not as if they are different, they just treat them like kids.

Once back in the school district Luc’s teacher made a statement in class. Luc slammed his hand down on the desk. She called the “crisis team” immediately, and evacuated the classroom. This gave way to Luc getting in school suspension, sitting in the principal’s office, etc etc etc.

Do you know why he slammed his hand down on the desk? Because she said the world was round and he was thinking….. WHAT? NO WAY!!!!! REALLY??????? Not that he should be slamming his hand ona  desk, but how about take a new york minute to understand why. Evacuate the classroom….. call the crisis team? When the crisis team is called teachers come running.

So you are an 8 year old kid who is so excited to learn the world is round. Then the teacher flips out and evacuates the classroom and five adults come storming in.

That’s the way to handle it. Atta girl.

He did he same thing…. exact same thing…… exact same lesson…. in his new school. His teacher paused and asked Luc if he was ok. She told me that he said to her….. “Are you serious? The world is really round???” and it gave birth to a great learning lesson.

See the difference? One side controls.. or tries to….. and the other side uses it to further the experience.

Now why on god’s green earth would I want to put him back into the school system that caused him so much trauma. To be honest at the time I didn’t even know about our new school. That’s where the really bad kids went I was told. Your school district will convince you that there is something so seriously wrong and dangerous with your child. They need to be drugged, they need a 1:1 aide. When will the restraints come???? You will spend hours in the principal’s office listening to her spew off on what she doesn’t even understand or know about. She knew about control. She knew jack about special ed. The image of her school was her main concern. Trust me on that one. It’s what she said to me.

I will never forget the day we walked into our new school, the school for the bad kids. I will never forget the first day of school there. I will never forget picking up Luc and and him relaying to me that he…. gasp….had a good day at school. There were no multiple calls from the principal. There were no pink slips coming home.

What was the difference???? The difference is that instead os separation, there is real and true integration. That does not exist…. no matter what they try to tell you….. it does not exist in general ed.

So put this kid in a  general education setting. Yeah, there would have been great laughter coming from the audience. That’s coming. Luc is different. He’s so high functioning that the comments I get are “He’s just a little off.”

Thank God, I think. Thanks God he is “just a little bit off.” Because he’s taught us what is really important in life. And that’s love. That’s having faith. That’s sticking together as a family.

When he got up there and rapped out his little solo, his voice was flat, he missed a word or two. Instead of snickers and laughter from the audience…. he practically got a damn standing ovation from the audience. Suprise was all over his face and the biggest smile grew across it. As if he was saying…. wow!

That’s what we all said.

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Break the Board

May 23, 2011

I love to ride to Bristol and Naples. There is just something about riding down there that fills me up. I also love to my long rides primarily alone. What others call a long ride I typically call…. a break. On a daily basis I work with so many people in so many different capacities that training is my sanctuary. (Not that I don’t enjoy some company every now and again…)

As I ride by the Sunday morning church goers I always think to myself….. you have your church….. this is my church. This is where I find that connection to my spiritual world.

A few weeks ago when spring was just a distant thought….. the ride was brown, the ground was brown, the air was crisp and every so often you could see the flowers just beginning to peek. Yesterday it was all green. Flowers were in bloom, trees with brand new life, rabbits and squirrels running across the roads.

As I headed down towards the “mountains” of Bristol I couldn’t help but again…. feel lucky and blessed….. for more than you could ever know.

It was a terrific weekend. Our boys at the Triple T did fabulous, our combined times were roughly as follows: Matt 10:13 ish, Ken 11:38 ish, Don 12:24 ish…… if you can do that on the Triple T….. it’s looking good for Ironman Lake Placid that’s for sure. From a coaching perspective it feels good when your athletes do well. The triple T is always a tricky one, play it right and it will boost your whole season. Mess one thing up and you are in a hole you can’t dig out of. Trust me…. I have seen it. They all played it right, especially the nutrition part.

In addition, Luc earned his yellow belt this past Saturday. Here are two videos I shot from my phone and was not able to rotate, so tip your head to the left. In Taekwondo…. this particular school ou don’t get your whites until you earn your yellow belt. You can’t test for it until you’ve taken 2 sessions. Last Saturday….. Luc tried to quit the whole thing.

He didn’t know his form as shown in the first video, he’s in yellow. I made him a deal. You will learn the form, you will take the test, and then you will decide whether you quit or not. In this family we finish what we start and I don’t care if you pass or fail. I care that you try.

(tip your head left!)

He earned that yellow belt and he’s continuing.

In this video…. he breaks the board!

So huge congrats to Luc!

This week is another big one!!!! Corporate challenge, training and race announcing at the Fly By night Duathlon!!! I get to announce at a race track!!!!!!!

And of course, lastly a giant congrats to WHITE HOT…… for another podium finish at IMTX, and another trip to Kona!

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Perspective on Hurt

May 5, 2011

Throughout my ten years of motherhood I have learned that my son was born to us to teach us. He came into our lives for a reason. I think as a parent you wonder what they learn from you, and now all these years later I could write a book on all he had taught us. Much of it I don’t know where it came from.

Luc is on “the spectrum” as they would say. There is no one diagnosis because he does not fit neatly into any one set of characteristics. (Notice I said characteristics: not problems, issues, deficiencies or even symptoms). He has leaned towards several categories, but his unbelievable social-ness kicks him out of being pinpointed into just one. Even with a “diagnosis” he likes to buck the system.

I guess he gets that from me.

The fact of the matter is this: the “diagnosis” doesn’t change the plan. The word “diagnosis” itself implies there is a problem. The implication of a problem then requires a “treatment”. The whole scenario eludes to Autism and it’s spectrum of disorders to be a disease.

I would not call it a disease. I would not call it a way of life. I don’t know what I would call it.

I don’t even care. What is important to us is to support our son. He needs extra support with education. He needs extra support with some of his fine motor skills. He is unable to tie his shoes yet or button buttons yet.

What he doesn’t need support in however…… are the social points of life. In fact, he’s well above and beyond any other child his age in this department. And most adults as well.

The other day we were at swim lessons. I try not to sit near the other moms, they tend to try to override the teacher and instruct their kids from the wall. Last week I told one mother who was screaming at her daughter to sit down and let the teacher teach. (or else bring her and teach her on your own). As the lesson started that same mother sat down next to me.

“Geez.” She said. “There is something off with that boy.”

She pointed to Luc.

Throughout my life so many people have said ridiculously stupid things to me. About me, about my son, about everything. You have two choices, you can get all riled up and fight. Or you can choose to understand that you just can’t cure stupid, and let it go. Luc didn’t hear it, thank god, else I would have then said something more than snarky. Instead I leaned over to her, told her it was my son, and that I was extremely glad he was different.

She sheepishly smiled, looked embarrassed, and I moved my seat. I am not going to waste energy on these kinds of people.

The next day we were walking back into the facility for a Fitness agility class Luc takes. That same mom was in the lobby, and I thought nothing of it. As we were walking to swipe our key tags Luc walked up to her. He and I had never discussed her. Never discussed what she had said. I didn’t know he knew who she was.

“Excuse me”  he said to her. “I swim with your little girl. She told me, that you told her that I was weird, and that I was the “R” word.  Please don’t say that. It hurts my feelings.” Then he turned and walked away. She and I stood there for an awkward moment. So…. at some point she had a conversation with her daughter, about Luc, and stated that he was weird and that he was retarded. At first I wanted to lay into her, who does that? What kind of mother does that?

Then…. I realized…. Luc had this situation under control. I was stunned. She was too. “What he said.” I said to her and followed him. Like it was nothing, he walked into his class.

It remained with me throughout the hour. I wondered how he was feeling? Between yesterday that little girl must have told him “My mom said you are weird and that you are R*******”.  He never said a word, never implied that his feelings were hurt…… was this good or bad?

As we were driving home I asked him what all of that was about. “Oh that lady?” he said, “She’s just a mean person. She hurt my feelings, so I told her so. We are not supposed to use the “R” word either.”

I asked him why he didn’t tell me the little girl had told him that. “I forgot about it.” He said. Wow. Would I have?

I asked him what made him walk up to her. “When I saw her I remembered what the little girl said. She said words that hurt people. She needs to be told she shouldn’t do that. Mean people say words that hurt people. She shouldn’t be mean.”

Simple.  

He continued, “People who say words to hurt you mom….. don’t have a problem with you, they have a problem with their heart. When their heart hurts they try to say something to make your heart hurt.”

Wow.

“It is like if Sam hits me and hurts my hand. I might hit him back so he hurts too. But this is words.”

I almost stopped the car and pulled over. I told him that I knew many adults who couldn’t take responsibility for what they did to other people. Who shirk responsibility when they do something wrong. I asked him what they thought of that.

“Then they can’t say they did something wrong. That is sad Mom.”

It was quite a drive home. In all these years I had never heard him articulate thoughts this way. He has  knowledge and insight most adults don’t. I had posted it on Facebook and we all joked how we’d kick her ass. He handed it better than all of us combined. I got caught up in the who would someone do that. What kind of person says that?

Luc, sees it much more clear. You hurt, you admit it, you say you are sorry. You understand why your heart hurts, and then you wont’ hurt someone else’s.

To say I am proud of him is a gross understatement. I never taught him that. We never talked about this subject. Yet he gets it. He sees the world differently. He sees it as less complicated. As a ten year old “on the spectrum” he sees things a lot more clearly than we adults do. He can’t write it on paper well, but he has a voice that he isn’t  afraid to use.

My job is to protect and nurture that voice as he travels through the difficult years of adolescence. The opportunity for that voice to be squashed is great. I don’t even know how to help him preserve it. Likely….. we just keep doing what we are doing. One day at a time, one step at a time, one situation at a time.

So you can take your diagnosis, you can take your classifications, you can take your treatment plans and differentiations. You can take the “R” word, the “A” word and even the phrase of being on “The spectrum”.  You can put all of that where the sun don’t shine. Because this kid, like too many kids……… doesn’t have a disease. Doesn’t have an illness. Doesn’t need a treatment. He, as so many others are…… trapped in a system that thinks kids should be one size fits all. These glimmers of light will shine through, as they did this week.

There is much more to these kids than meets the eye. So head’s up. There is a lot to learn from them. Most people need therapy to discover for themselves what Luc already knows.

May we all learn a lesson from Luc this week: 

You hurt, you admit it, you say you are sorry. You understand why your heart hurts, and then you wont’ hurt someone else’s.

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Intuition again

April 11, 2011

Coaching the female athlete part II now on Xtri!!!!

AND…. one of my favorite blog posts ever from my sister-from-anotha-motha… Sonja can be found right here. A really good read!

I think I smiled the whole time. So did the rest of the gang. There was just so much to smile about. The weather was warm, first road ride of the season, 2800 feet of climbing, no flats, feeling amazing. I always worry about the transition from the trainer to the road, while the numbers look to be what they should be, how will I fare?

beautifully. Transition was perfect and seamless. Last year this wasn’t the case. In fact I think one of my first outside rides was in Galveston at Texas 70.3. A few weeks later I was near burnout, I threw my bike across the lawn. This season Jesse is definitely playing me right. In December he refit me to my bike, it’s been perfect ever since. Transitioning to the roads I had to remind myself to sit up every now and then. Talk about comfortable. 

I feel like me on the bike again.

One of the things I have been working on is feeling the efforts. Like I used to. I record every bit of data for Jesse, not for me. When you coach from a distance that helps incredible. I recently read a great interview with Chrissie Wellington and she reminded me of this:

“A couple of things I have learnt along the way are to really listen to your body. The more you rely on gadgets such as heart rate monitors the more difficult it is to develop a deep intuition about your body and its reactions. Don’t fall into the trap of thinking that more is necessarily better (eg more miles and hours does not necessarily mean faster and stronger).

My former running coach, a man called Frank Horwill, always said “there is no such word as can’t, only I will try”. I always try to live by that motto, and give everything I possibly can. You might not succeed at first but never give up – you can achieve your dreams. Just be patient and have faith in yourself.”

I have been through quite a bit physically the past few years, and relearning that deep intuition has been refreshing, it’s allowed me to trust my body again, it’s allowed me to get to know myself again. I am nailing the paces and the HR’s. That I can do it without looking and being dictated by a watch or gadget is just plan awesome. It’s a game I have created, cover the data, feel the pace, feel the intensity…… then I upload at the end…. BINGO. I have been more spot on this way than when I look during training.

Feel the effort. It’s in you. It’s there. It’s been there all along. I think much of what happens is this technology pulls us away from ourselves.

It’s getting back to me. To where I began all of this.

It’s camp week. QT2 Camp at the National Training Center. I have been preparing for heat these last few days by running in a hat and gloves, long sleeves (and shorts of course because I do have the cutest Lululemon speed short collection!!!!) Every race I am doing tends to be between 90 and 100 degrees, so I am becoming the heat miser. I dress ultra warm. I want Gulf Roast Coast to feel air-conditioned compared to how I am training.

I will turn a weakness into my strength.

I can’t wait to step on that plane. It’s Southwest. I hope the top doesn’t come off.

We have very packed days. 18 hours os swim bike and run.  If I fuel this camp correctly I will get a giant fitness boost out of it. Fueling something like this is key…. not just during the training but when we are not training (that whole 3 hours !) It’s easy to get very lazy when you put in this kind of volume and just eat powerbars and cookies. But if we want to really gain what we stand to gain, then we need to fuel it properly. Of course, I have a fueling plan I came up with tracking all of it. I use it as a road map and I try to stay close to it (I needn’t be perfect, just close).

The training is planned out, it helps for me to have the nutrition planned out as well.

No thinking necessary.

First things first….. getting everything done a mom, triathlon coach, nurse etc., needs to get done before she steps away for a few days. I have an incredible husband who is an incredible father, giving me the chance to step away for a few days to train with the best of the best is something I appreciate more than the chance itself. To be able to share life with someone who shares this passion of mine is the real gift. That it’s become a family affair….. is a dream come true.

See you on Wednesday!

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Normal

March 22, 2011

(I know we changed to a Mon / Wed / Friday publishing schedule……  but I definitely wanted to share….. my XTri column begins on Wednesday, and I have a really terrific line up of interviews….. tomorrow I shall share……)

It will never be normal. That’s our reality. How many times do I have to be hit over the head with it??? How many times do we have to try and fail before I gain the foresight to realize….. our path is not the normal path. It never has been, and it never will be. Writing that sounds negative, I am not intending it to be. We have a different path. It’s not something that he will outgrow, it’s not something that goes away. It’s not something that’s wrong…. it’s just the way it it.

It’s our normal.

We did the best we could. We had no indication he’d react the way he did. We went to the best possible place. The moment he sat in that chair he began screaming about his heart. Not my heart.Notmyheart……. the horrible thing about it is this: when it is all said and done he apologizes. He isn’t himself when it happens and he feels so horrible. He apologized to the dentist, to the hygenist, the secretary, to everyone in the waiting room. What I loved about the dentist was that he looked Luc in the eye and said this:

“Son you have nothing to be sorry for. You did nothing wrong. No one here is mad at you. We all care about you. We are your friends.” That seeemd to ease Luc’s mind, for now. That he showed. I hugged him really tight and commended him. I do understand that it is not within his control. He prepares himself to relax, it’s just like a switch is flipped and meltdown happens.

That’s what we call it. Meltdown. If you are one of us….. you understand what having a meltdown means.

It’s not a tantrum, it’s not something punishable. It’s not one of these moments of “pull yourself together or else.” It’s not one of these…. that kid needs consequences….. because if that’s what you believe….. then you are more outside of my world than you will ever understand.

This is like living in a world where everyone speaks one language. only a certain few speak this language.

I have heard it from everyone. I will never forget a woman who worked “in the field” who told me she knew how I felt because she had to “make calls to moms like the calls you get”…. oh sister, you will never understand…. and I hope you never have to. This is a world that is not decoded. There is no special secret agent ring. There is no consequence for what happens here because this is actually not always within control. There is misbehaving and then there is the sympathetic nervous system.

Have someone scare the shit out of you and begin chasing you with a great big knife in the middle of the night in complete darkness. That might, just might be what these kids feel. It’s not like you can stop and say…. well hold on now, if I don’t stop running for my life I will face a consequence….  because you are feeling a feeling of terror and panic.

I love that phrase too…… you will have a consequence. In my day it was “Your father will kick your ass. Shape up.”

That…. wouldn’t work. You have to give them space. Don’t crowd them. Sometimes arms around them is like fingernails on a chalkboard. Don’t even try to talk to them. Give them space, keep them safe. They will come down off of it, out of it. They will. Don’t force them because it will escalate them. Don’t say a word. Just let it play out.

When it was over and we were back in the car…… I assured him he did nothing wrong. He told me all of a sudden he remembered being in the operating room and waking up with a tube down his throat. He got scared at the dentist and he knew it was different but he just got so scared. The hard part…… he knew when he was walking in the door that he was here for the dentist. He knew when he got into the chair it was the dentist. He is aware… this is what is hard…… that he loses it and when he’s losing it he can’t stop it. Afterwards he is embarrassed by it. He doesn’t know how to stop it.

I understand. I told him. I do understand. I understand him. So next time we do a sedation. Not a big deal. If that’s what we have to do, it’s what we have to do. This is our reality. This is our normal. There is nothing wrong with you. You did everything right, we are all so proud of you.

We all love you.

By 9pm he was fine. I was listening to him read Harry Potter to me in bed. Chapter 9. We stayed up way too late. But that’s life. It’s our life. We have a really really good life, the three of us. We are one hell of a great team. So we do this together. Whatever we have to do to do what we have to do, we do it together.

Because that’s our normal…… and our normal is beautiful.

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Memory

March 21, 2011

October 11th, 2004. I remember that day like it was yesterday. Isn’t it interesting how some days we can’t even remember the conversations we had with people, yet other days we remember every detail and can remember every smell? We can still feel the feelings, still feel the emotions? That’s what October 11th 2004 is like for me. It was the day Luc had open heart surgery. It had been planned for four years. It was to repair an Atrial Septal defect (ASD). On the spectrum of defects it was the best one to have.

But as a parent it was devastating.

We never slept the night before. He laid in between Curt and I and both of us were awake all night. We didn’t speak, we just watched him breathe. Luc knew he was having surgery but had nothing to relate it to, he knew his heart was broken and that it was going to be fixed. He slept so soundly. His perfect chest rose and fell with each easy breath.

The hardest part for me was carrying him into the operating room. In pre-op he was drunk with versed, the cutest kid in there, making everyone laugh. In just his diaper (he was four and not potty trained, we knew long before to just wait as this experience would set him back in development). He was giddy and smiling and it was very cute.

Then it was time.

They brought me a paper suit, the space suit. With a net over my hair and booties over my shoes I picked him up. My husband kissed him goodbye and I followed the nurse. We entered a long grey hallway.

You know how in the movies for dramatic effect a hallway suddenly gets longer…… that’s how I felt. I can still feel the way I carried him. As you carry your child. Chest to chest. His legs wrapped around my sides, his cheek on my shoulder, his arms around me. Mine around him.

Be brave… I kept telling myself…. be brave…… I had prepared him the best I could. We used a bear and we talked about the “space gas”. They had told me to tell him he was going to a party…. but I declined. They are amazing at what they do….. they are the best….. you don’t prepare a child for open heart surgery for telling him he’s going to a party.

As much as we had talked and prepared, he really had no idea that in just minutes he would have a breathing tube, his chest and sternum would be cut open, and he would be placed on bypass. Which means the vessels of your heart are detached and attached to a machine while your own heart stops.

His heart would not beat for thirty minutes. That’s what happens in open heart surgery.

I was pretty positive mine would not beat either.

That walk down the hallway was one of the most difficult walks of my life. I put all my faith into god and into the team who would be fixing the large hole in his heart. Because of these people he would continue to live a long and healthy life.

Soon we were at the doors, they swung open and there was the machinery and sterility of the operating room. They cheered because he was there, but one look around and he knew the gig was up. I knew every single person in that room, I prayed for them all, that they’d be their best today. And they were.

He began to scream and they sat him down on the table facing me. His arms reached for me, his eyes screamed terror and so did his voice. The plastic mask was placed over his face and he held his breath. I never lost eye contact. We counted down. I felt like I was going to die. What did he think, I can not take fear.

Be brave Mary…….. the anesthesiologist said to me…. be brave Mary……. I nodded and smiled and played along.

Before I knew it his eyes rolled back, he passed out, they laid him down and got to work on the IV, the monitors…….. the nurse put her arm around me and walked me out the door. She gave me a hug, told me he would be safe, and the door was closed.

There I was, alone in the long grey hallway, holding onto a little Buzz Lightyear stuffed toy. I put my hand on the door. Be brave Luc…… be brave…….. I stood there for a moment, then I looked down the hall. As long as it was on the way here, it was longer on the way back. I began to walk.

Someone came up behind me and must have heard me crying. She put her arm around me and walked with me. I told her I was lost. She told me she’d bring me back to pre op. I found my husband, and we went up to the lobby where my parents and Rich were waiting.

It was all fine. The surgery went smoothly. His recovery was amazing. eleven days later he even broke his foot. He’s a healthy strong kiddo. And he has a scar down his chest which to me signifies the gift of a long life he was given.

This afternoon Luc is getting a baby tooth pulled. His adult tooth is growing along side of it instead of on the same track, it has to come out. He has no idea. As silly and small as a tooth is….. it reverted me back to the feeling I had that day when I walked him into the OR six years ago.

We started off with our family dentist who…. good lord he sucked with Luc. He told Luc to man up. He told Luc that he could give him laughing gas and when he whipped out the plastic mask….. Luc immediately thought he was having open heart surgery again. It was awful. I fired the dentist right then and there. His brother does my taxes, next door. When he saw me come in last time he tried to make amends. Why did you fire me? Because you suck with children I told him.

We found an  incredible pediatric practice. They are truly remarkable. They work with kids with special needs all of the time. When they told me they needed to pull the baby tooth, I knew they would be able to get it all done without traumatizing Luc.

But once again I am taking him to have something done of which he has no idea. Part of me knows it’s the right thing to do. If he knew he was having his tooth out the weekend would have been filled with anxiety. Instead we had a great weekend. A great family weekend where we laughed and laughed and laughed. I just don’t feel good about him not knowing what will happen to him.

It’s a tooth Mary. It’s going to slide the heck out.

Oh trust me I know. He won’t even know what they did until we walk out the door. It will all go fine, he will be fine.

It’s amazing the memories a simple procedure brings up for me…….  the feelings I still hold from walking him down that hallway six years ago. I knew those feelings were still there, I just didn’t know how deep. I just hope that for Luc today……. it doesn’t bring up the same fear.

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The Trauma Life

March 15, 2011

It was 28 minutes door to door. Arrival to operating room, although if you were us it seemed like eternity.

“Is it like ER or Scrubs?” The question I have been asked time and time again. It’s a little but of both.

But I remember that trauma like it was yesterday, although years have passed. I remember each trauma. Each stabbing, each gunshot wound, each homicide…..  “I thought you were in pediatric emergency….. people would say. This is pediatric emergency medicine. Up to age 18. The kids you take care of in a  trauma situation are mostly 15-18 year olds.

You get advanced notice for 99.9% of traumas. When the EMS crew is picking you up, someone is giving us a head’s up. We are preparing. Level I blood warmer. Intubation meds. Chest tubes. We think of everything we can to prepare. My IV supplies are out, pre ripped tape lines my trauma gown. We’ve designated the roles we will take, often I was bedside nurse, which depending on the trauma could get pretty crowded.

That particular night the trauma bay was getting hit, which truthfully is like every other night. Just when you thought the sh*t was hitting the fan something else would be on the way. Get that woman to ICU, why won’t they accept her…… the politics inside of the hospital can be horrendous. But at the end of the day our team took incredible care of you, and we gave it 110%.

In this particular patient rolled and it was a traumatic injury to say the least. On the backboard bundled up, luckily the paramedics had already intubated, we have a secure airway which is sometimes half the battle. Trauma, ortho and vascular teams were all present, and I fought like hell for my spot at the side of the bed. My initial role is to get a line, get labs, connect to the monitor, help roll, get the clothing off….. give the meds…… all at the same time.

In the moment you don’t even think. My heart rate I guarantee stays below 50. Another nurse is there working with me. We can communicate without even talking.

“We are going to need blood”. A doctor calls out. The other nurse looks at me, I answer with my eyes. I have already prepared the level I warmer, a machine that delivers units of warmed blood in seconds. Manning the thing is a job within itself. On a good day there is a third nurse documenting, recording the shouting out of assessments, of meds given, keeping track of everything.

“Pressure is dropping….” Someone calls out. More fluid, more blood, more meds, pack the wound. They are bleeding out faster than I am infusing the blood. The blood goes all over the floor. It looks like a war zone in the bay.

You think we work hard? An emergency dept environmental services employee works just as hard. (The cleaning people). There is blood everywhere, the floor becomes the garbage.

Speaking of working hard, the administrative staff, they are the glue. We don’t have a name for this patient so they become Trauma A. Then they begin the work of trying to figure out who this is.

“The OR will be waiting.” Someone says “We are ready for the scanner.” Seamlessly we pack up the patient and together wheel them to the CT scanner.  Doesn’t always happen like that. Before they operate they need to see what’s going on inside of you. Internal bleeding, that kind of thing. You can’t just open someone up and see if they’ve sprung a leak. It’s a bloody mess inside your body.

The trouble with the level I warmer is that it’s not portable. I take the cooler of blood units and run with the gurney, squeezing the blood in by hand. In the CT scanner I stay…. to manually squeeze the blood in. Forget the lead gown, it will just get in the way. We don’t do that to be heroes…… we just know the chain reaction that happens. Blood inflow slows down and doesn’t match the bleeding that is going on. Blood pressure drops, hypovolemic shock takes over and pulling someone out of that mess is not worth a little radiation exposure. It’s easier to stay and be exposed.

We all take too much exposure, sometimes we just don’t have time.

The scan goes relatively quickly and I am the only one in the room with the patient. The trauma team and my nursing teammate are standing behind the glass. She and I hold eye contact, just because. You don’t feel the fear, the anxiety, you just go. You just move.

Another trauma is called in. Not pediatrics. We lose most of the team. It’s me, a doc and my other nurse. I feel relieved. It’s easier with less people. Vital signs begin to destabilize, we get to work. We need to stabilize before we roll down the hall and into the elevator to head to the or. We don’t want to be coding in an elevator.

It’s a 1 minute journey, but we bring everything with us. defibrillator, meds, everything. It’s all prepackaged and ready to go. I am on my 9th unit of blood. I am squeezing the bag, flushing and replacing. Repeat. Repeat. repeat. Hope.

stabilized…. the OR is ready. Go time. The three of us haul ass down the hall with the patient. This kid will never remember us. He will never really know about this 28 minutes of his life. He will never know of the amazing teamwork that goes into a situation like this.

Into the elevator it seems like forever until the doors close. We are holding steady. We say nothing, we don’t need to. Doors open and we are at the OR door. Swiftly the doors open and here we are, the blood covered trauma team in the sterile OR. If you look at the three of us it looks like we stepped out of a horror movie. We wear trauma gowns and glasses to protect, but we still get covered.

We roll into the OR where they are set up and waiting. The transition is smooth, the patient is in their hands now. We wheel the gurney out into the hall, place all of our bloody sheets and equipment on top of it and head upstairs.

That’s when the gravity of it all hits for me. About 1 minute after it’s done. It feels like my heart will jump through my throat. Holy sh*t what just happened. The three of us feel the same way but we don’t talk about it. It’s just a series of heads shaking, and deep breaths being taken.

Doors open, we roll our gurney back down to the trauma bay where thanks to the incredible environmental services worker, it’s sterile, clean, shiny. Where the events of the past 30 minutes have vanished. Except us.

“Nice work.” Our resident says to us. We smile. We nod. That was good work. “28 minutes door to OR”. Good lord it felt like eternity. It felt like 28 minutes ago I inhaled and now I just exhaled.

And all of that just happened in the blink of an eye.

We walk back to pediatrics where a mother immediately begins to lay into us that she is hungry and wants something to drink. Another wants a prescription for Tylenol. Another has been waiting thirty minutes. The unit was a little behind because two of us were in the trauma bay. But that’s neither here nor there. We jump back in and move on. That’s what we do.

Or what I did.

Do I miss it? No. Not at all. I am glad I did it. I loved it while I was in it. I watched a lot of kids die. I watched kids kill each other. I held parents who lost their children. I have done a lot of CPR. I have seen things you can’t comprehend. Some things even I can’t comprehend.

Morning would come, and I would drive home, and come into the house and hug the guys tight. They had heard the stories but they didn’t understand the gravity of them. They didn’t understand what it was like to be in the middle of it. I would be able to sleep just out of sheer exhaustion.

Later that day I would turn on the news. See how my patient was doing. They made it through surgery, all would be well.

Exhale.

This is why…… I am the way I am. This is why I don’t sweat the small stuff. This is why I allow my sport to be the fun stuff, why I don’t get caught up in dramatics. Someone tried to pull me into dramatics last week, I just don’t have the time for that kind of stuff. My father often jokes that I am bullet proof to that kind of stuff. I am.

This is life. This is what really happens. I have ten years of reality checks stores up within me to keep bringing me back to that.

It was hard to step out, but I don’t miss it. I don’t miss the adrenaline rush. I don’t miss the insanity. I have been there and done that. I am so grateful for those ten years, I learned more about life within those walls than I will ever lean on a bike. I learned more about teamwork than I ever will on a swim team. I learned more about doing the right thing….. than I ever will in church.

Believe me when I say life is precious. Believe me when I say things can change in the blink of an eye. How many times did I stand in the nurses station knowing that a child has an inoperable brain tumor, and look through the glass to where they were sitting and waiting. I had this knowledge and they thought their child was here for something different, something simple. Knowing that those moments they were sharing right now were the last normal minutes they’d ever know as a family. I remember feeling the horror as the Oncology doctor arrived, sat at their computer, and looked over the screen at them…… thinking the exact same thing.

I remember a young boy who came in very sick……. we needed to intubate him and we needed to sedate him. He was awake and alert. He looked at us and told us he was scared. And we reassured him, his mother was right there. He died later that night in the ICU.

That right there….. fear…….. is the emotion that rocked me each time. I could handle pain, I could handle anger, I never handled fear well.

Do we cry? You’d better believe we freaking cry. There have been many a time where a child was pronounced dead, and we’d try to keep working. Letting go, stopping was the hardest thing to do. Even if it was beyond repair, we never wanted to stop. We’d resuscitate all day long if you let us.

When we stopped is when the tears would come. A feeling I can’t describe. somewhere between loss and pain and feeling that we failed. It was the worst.

This is the first time I have really been able to write about what it was like. It’s so big. It’s so deep that I can’t adequately write it all out right here. But this is why. This is why I am relentlessly positive. This is why. There’s a dimension to my life that no one sees. While I have stepped out of the trauma life…… I am in a whole new world of nursing that again, brings that dimension.

That dimension, that balance is why I can never stop being a nurse. It’s who I am, it’s in my blood. It connects me to life as it really is.

It’s a cross between ER and scrubs to be honest with you. It’s a world you just can’t even imagine.

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