2018 Chicago Marathon Race Report

Pre-race at the tent
Yes, those are plastic bags on my shoes

2018 Chicago Marathon

This year I had high hopes for my marathon.  In previous years, my goal was to finish the race.  This year, I wanted to see what I was truly capable of and run the race I knew I could run.  I read in a book that if you want to get better at something, go hire someone to help you reach your goal.  It seemed like such a simple concept, so I went looking for a coach.  I found Heather at McKirdy Trained and we were a perfect fit.  Over the past 6 months she has squeezed every ounce of potential out of my running by giving me workouts I had never done before. I will go over our training in another post, but one of the biggest takeaways is that you do not run over 2 hours and 30 minutes for ANY long run during training for a marathon.  For me, that is time enough for me to run a half marathon.  That’s right, I did not go over 13.1 miles in any run during my training.  Seems crazy, right? But is it crazy enough to work?

Pre-race

The forecast going into race day was 60° with 10-15mph winds coming from the northeast.  Also there was going to be scattered showers throughout the first 3-4 hours.  Although I was a little concerned about the rain, the cooler weather excited me because my last three marathons were a little too warm for me!  We ended up staying at the Sheraton Grand Chicago on Columbus. It ended up being about a mile walk to the RMHC charity tent where there was food, music, and most importantly fellow Team RMHC runners who were all running for such an important organization.  I ended up biking to the tent in the morning because I wanted to stay off my feet as much as possible before the race.  But what I did not take into consideration was that I had never biked in downtown Chicago, with 40,000 pedestrians walking around at 6 in the morning.  It was a little stressful! And to add to that, it had rained pretty good the night before so all of the streets were wet, meaning now my shoes and socks were wet even before I started the race! Not ideal!  Luckily there were some heaters in the tent to help warm me up.

Starting Corral

I arrived at corral H around 7:30am.  I tied plastic bags around my feet to try to keep them dry as long as possible.  I love being in this corral because I get to see runners just like me who felt compelled to raise money for a charity and used the marathon as the vehicle to help them.   I found a curb to sit on right as I entered the corral because I did not want to be standing for almost an hour waiting to start the race.  At around 8am, a little but of rain showed up and I quickly threw on my disposable poncho we bought online.  I knew I wasn’t going to wear it the whole time, but I needed to stay dry at least while I was waiting for the beginning of the race.

The Race

A week or so before the race, my coach shared the race plan with me.  I never had a race plan in previous marathons, but after a 15K PR at the Bay to Breakers earlier in the year, I was very excited to see what a race plan would do for my marathon time.  Here is what the plan was:

Marathon Race Plan

Miles 1-9

For the first 6 miles I made sure I did not get caught up in the excitement of the race.  I stayed on the slow end of my pace range clocking in 12min/mi.  Of course I cried while running past the Ronald McDonald House during the first mile, and the rain started to pick up a little more towards mile 5.  I wore my Nike Flyknit Epic Reacts for the beginning of the race, and they do not protect you from any kind of moisture.  Since rain was in the forecast I had already planned for my wife’s cousins to meet me at the halfway point to swap out shoes.  But in the meantime I was going to have slosh around in these shoes.  The winds started to blow around while heading north.  I knew Diana was planning to see me around mile 8 so I just had to get to her for my first checkpoint.  I had told her I would be there maybe around 10am.  During miles 7-9 I wanted to stretch the legs out a little bit, so I picked up the pace a bit.  I ended up averaging under 11:30 for that 3 mile stretch and that included a quick stop to the port-a-potty.  Turns out, I was a little faster than the 10am expectation I told Diana and I could not find her. It was the first time I had actually missed someone who I expected to be there.  Although I was a little disappointed, I knew in the end it was up to me to do well in this race, whether or not I see my friends.  Good thing I was able to become self-reliant because that ended up being a theme for the first half of the race.

Miles 10-21

The next set of miles required a little more speed as there were surges at the beginning of every mile.  I had done similar surges in training, and I liked them, so coach put them in my race plan.  There was something to knowing that at the beginning of every mile I would pick up the pace.  Oddly enough, I looked forward to those surges.  I knew early into this segment of the race that I just needed to get to the halfway point.  Ria and Erika would meet me to give me my change of shoes.  My brother Tony and the Tumang family would also be there cheering me on.  Getting back into the loop really is a big confidence and adrenaline boost.  The crowds get louder again after tapering off a little bit, but the change of the course to run under the L was pretty awesome.  I told Ria and Erika I was planning on being at the halfway point around 10:30 or so.  But once again I underestimated myself and I was there a couple minutes before that time, and I missed them.  I also missed the Tumang family around the same section.  By some grace of God, my brother Tony who JUST stepped off the subway saw me and got my attention closer to mile 14.  He was able to give me a fresh shirt and unlike any other marathon I had run, I changed and took off without much conversation.  We only talked about how I missed everyone.  I didn’t realize it at that point but I was only a couple minutes off of my PR for the half marathon distance during a race at 2:36:02 (PR – 2:34:56).

Changing that shirt was huge for me.  I felt like a brand new runner.  The raining had pretty much stopped and was nowhere near what it was during the first 1/3 of the race.  The winds were still a bit of a factor, it would occasionally gust and take my breathe away and I would have to cough it out.  But my God, I was actually enjoying myself.  As much as I love the Bulls, the mile and some change to the United Center has always been a breaking point for me.  But with my race plan, it was much easier to chunk it into smaller pieces.  My feet were starting to hurt after I had seen Tony so I popped in my AirPods and called Erick.  I told him that I NEEDED those shoes.  I know it must have been hard for him to hear me while I was running, but he got the message.

Before the race I noticed a small whitehead that was on my stomach.  I really did not think much of it, until about mile 15.  Since I had my AirPods in I started to listen to some music to make the time go by a little quicker.  Of course, I listened to the Hamilton soundtrack on Spotify.  At some point I looked down at my feet to make sure they were pointing forward and not inward or outward and then I saw it.  On my white Team RMHC singlet from last year was a deep red mark spreading down to my shorts.  I honestly freaked out for a hot second.  I was just jamming to “My Shot” and it looked like I had been shot.  I quickly lifted up my shirt to find that whitehead had been chaffed raw and was not dripping blood.  OK cool. That hasn’t happened before, but with all the rain, it was not a surprise.  I went to the next Aid tent at Mile 15.  I knew I was going to lose time, but I didn’t want this to get any worse.  They patched me up and I lost about 3 1/2 minutes.  I knew stops like that, and the stop to get new shoes would decrease my chances of hitting my goal time.  I did not get to hung up on that.  I knew I was doing well, and I would continue to do well, and maybe those stops will somehow reinvigorate me.

I got to mile 17 with faded blood now on my singlet and there was my brother Tony, the Tumangs, and my sweet, sweet dry socks and shoes.  I spent several minutes there, trying to change as fast as I could.  I was ready to go pretty quickly, but then I forgot that I needed some aquaphor on my feet before I started off again.  I had to take off the shoes and socks, apply the aquaphor, and then put everything back on again.  I lost closer to 6 minutes on this interaction.  Abby asked if I had wanted strawberries, and they sounded really good at the moment.  But I did not want to break the “nothing new on race day” rule, so I sadly declined.  This race was the fourth time they had seen me run a marathon, and all around the same spots.  They had seen me at very difficult times in previous races, but here I was at mile 17, still looking good.  For the first time they were saying I was going “too fast”.  I gotta say, that really picked up my spirits.  With my fresh shoes on I took off back on the course, and they said they would meet me again at around mile 21.

Mile 17 - Switching Shoes
Fresh Socks and Shoes!

It is around this time in the race that I tend to space out a bit.  Not necessarily hitting a wall, but more just not being able to focus as much as I want.  Although I now had dry shoes on, they are the ones I trained in all summer that had over 300 miles on them.  They are the Hoka One One Bondi 5s which have a ton of support.  But all I kept thinking about was that they had too many miles on them to race in.  In comparison to the Reacts I was wearing during the first 17 miles, they were a lot bulkier.  It is funny how your mind tries to create these roadblocks.  What was I scared of? That the shoes were literally going to just break apart at the seams? I was going to finish this race even if I was still in the wet Nikes.  Because of this internal argument, my pace slowed a bit over miles 18-20 to 12:13/mi.

I arrived at mile 21 tired but still ready to finish the race.  In previous marathons, this is where I looked my absolute worst,.  Defeated.  I remember one year I said I was going to quit.  This year, I knew I was still in good shape to PR and that drove me,  But, I still needed something more.  My support crew was there ready with my last singlet change – the white Team RMHC singlet from this year.  It was a little more snug than last years but was gleaming white from only being worn once in training.  At least I could take the gun shot evidence singlet off now and I could look good in the remaining race photos! Abby again offered me strawberries.  I was absolutely done with the gels I was taking.  I knew I needed them, so that is why I took them, but I could not stomach one more of those.  This time, I broke the law and had a strawberry.  A sweet, sweet strawberry.  It tasted SO good! I had the rest that was in her container.  She then had some dried cranberries and wow it was like tasting sugar for the first time.  It was what I needed.  Another extra minutes logged at the stop, but this was what I needed.  Erick said, “You are going to KILL YOUR PR”, and he was right.  Even if I slowed down to 15min/mi, I would still PR by a ton.  After that boost, I was ready to finish this race.  Just like years past, they told me they would try to catch me at mile 25.  But this year I had a plan of my own.

Bloody Singlet
Bloody Singlet
“Food is good”

Miles 22-26.2

It is interesting being in the latter half of the race finishers. You see all kinds of people going all kinds of paces.  Some are just trying to survive the last few miles.  Others are still moving pretty well, but you know they are mentally willing themselves to take each step.  And finally there are people who are completely zoned in and determined to finish.  I had been in the first two groups of runners at the end of the race.  I always wished to be in that last group.  And this year, I finally was able to put myself in that zoned-in group.  It was a simple equation in the end: (1 mile + 1 minute surge) x 5 times = Chicago Marathon Finish Line.  After the fruit goodies, I clocked a 11:57 on mile 23.  I enjoyed that victory because I had never gotten anything near a 12min/mi at mile 23 of any other marathon. As long as I stayed around that pace and not longer than 13/min/mi, this would be easy.  Mile 24: 12:52 – ugh, too close to 13 minutes, speed it up! Mile 25: 12:34, that’s more like it! I hear the familiar yell of “Go Joey” from my support crew.  This time I do not stop.  I simply stick my right hand out and don’t slow down.  I hear my brother say “Oh! This is it? That’s it?” And then more cheering.  There was only a handful of them there, but they meant so much to me in this race.  I wanted them to know, that I got this.  I FINALLY GOT THIS.

That second to last turn onto Roosevelt is one of the most exciting turns in the race.  There is still about a 1/2 mile left, but there is nothing but fatigue, adrenaline, and excitement fueling your legs. You earned every inch of pain you feel in that moment, but you know in a couple of minutes you are going to be incredibly happy.  But first, you have to get over that damn bridge.  The excitement fades away for a bit, and grit comes and takes over.  I am literally clenching my jaw to get over the bridge and control my breathing as much as possible.  I did not come this far to pass out just short of the finish line.  Not only is the biggest incline of the race at the end of the race, but it also happens to be where the most race photographers are. That does not seem like coincidence.  They want to see that pain in our faces and they definitely saw it in mine.

The last left onto Columbus. I look at my watch, yeah I am going to destroy my PR.  It was not the time I was hoping for, but I will absolutely take it.  I feel like I am sprinting, but I realize that it is closer to a power walk than anything else, which is fine with me because I don’t want to run into anyone at the finish line.  I raise my hands up in the air as I cross over the last timing mat.

5:36:24 – 63 minute PR!

I sent a kiss up to Heaven to all the angels who were with me: my Dad, Tita Imelda, Uncle Rudy, Mason Vigan, Baby Gray, Tony Ocampo, and so many more who I thought of throughout training and throughout the race.  Finally, I enjoyed a marathon! Finally, I smiled at the finish line! Finally, I did my best!

The Finish Line
Celebrating a HUGE PR!

 

My family at the RMHC Tent
Erika and Ria gave my shoes to the Tumangs!
Tony and I have run in 6 marathons between the two of us in the last 9 years
Yes, honey. That is all daddy gets for running for 5 1/2 hours
Medal and Beer
Marathon Hardware

2018 Pettit Indoor Marathon Relay

BWRC at Pettit Marathon Relay

A few months back the running group I trained with decided they were going to send some teams to go run the Pettit Indoor Marathon Relay.  I somehow got swept up in all of the excitement and put my name in as well.  I was able to convince my old college friend Christine to join us also.  If anything, it would give us a chance to catch up while we do the relay.  Spots seemed to fill up quick and before we knew it, the BWRC was sending enough runners for 11 teams.

Each team can have up to 4 runners and would collectively run the distance of a marathon on the indoor track – which ended up being 95 laps in total.  If you have a full team of 4 runners it ended up being between 6-7mi per runner.  The active runner ran with a velcro strap with the timing chip around their ankle. After their leg was done, we’d transfer the velcro strap to the next runner.  Along with Christine, we were matched with Emily who is one of the site leaders for BWRC and Nolan who was a last minute replacement for someone else who couldn’t make it.  From the very beginning we told each other we were not trying to hit any specific time or pace, so that took some of the pressure off.  I brought my wireless Bose speaker and we had music the whole time so it was pretty clear we were in it to have some fun.

Marathon Relay Team
Nolan, Christine, Emily, and Me

The last time I ever did any kind of relay was when I was in high school.  In the second or third to last event of the track meet, there would sometimes be a race called the “Weightman’s Relay”.  It was a 4x100m race for shot-putters and discus-throwers.  That’s right, it was the big guy relay.  A lot of times this race was just an “exhibition” race – also known as “watch the fat guys run”. In all honesty I really enjoyed when I was able to run it, because just for 100m I could pretend I belonged out there on the track with the rest of the runners.

High School Track Team

The Team

 

Christine on her first leg
Christine on her first leg

I’ve known Christine for over 20 year now.  Is that right? I can know people for that long? Man I am old! We were cheerleading stunt partners in college so our shared fitness goals started early on.  After that we stayed friends and eventually started running around the same time. She even helped me finish my second marathon.  I knew having her on the team would help me mentally just like it did when she ran in the marathon with me.

Nolan
Nolan making it look easy

Out of the four of us, Nolan was clearly the fastest.  He is 11 years old and on cross country at his school.  It was pretty amazing watching him run so fast and so effortlessly. I didn’t care about finishing fast, but with him on the team, he could cancel me out since I was the slowest.

Emily on her first lap
Emily on her first leg

I haven’t known Emily very long, but one thing I do know is that she absolutely brings the positive energy.  She is one of the site leaders and pace group leaders for BWRC and I was happy to find out she was on our team.  I wish I was faster so I could run in her pace group too.

The Race

The race started promptly at 1pm and we set the order of our runners – Christine, Nolan, Emily, then me.  When Emily became our captain a few weeks back we decided to do 4-lap legs.  After talking more on Facebook we decided to shave it down to 3 laps.  We had no goal or strategy, so we just wanted to see how things would go.

After each of us completed our first leg of 3 laps, we quickly changed our strategy to running 2 laps per leg.  Since the track was a little longer than the standard track at 445m (.28mi) it messed with our pacing.  We worried that we would get tired faster.  “It’s a marathon, not a sprint” could not be more true at this point.  We figured, if we knew we only had to do 2 laps at a time, it would be much easier to manage throughout the rest of the race.

I had my Marathon Relay playlist rocking the entire time at our pit stop so we could pass the time waiting for our turn.  Now with the shortened legs, there really was not that much time to wait around for your turn.  One thing I did not consider was how quickly I would tighten up waiting my turn.  The running track is secondary at the Pettit arena to the two hockey rinks and the olympic speed skating long track.  The temperature felt like it was in the 50s the entire race.  I would absolutely love this climate during an outdoor marathon, but not during an indoor marathon relay.

One by one, the length of this race was starting to wear on us differently.  First Nolan’s foot started hurting him and he was running out of energy.  He was still clocking pretty quick splits, but you could tell he was not quite enjoying himself any longer.  He ended up swapping his shoes out with some shoes he had broken in.  Next my ankle started stiffening up and then eventually Christine started hurting also.

My last lap

The Finish Line

Just like my marathon experiences in the past, we just had to keep chipping away at the miles.  I refocused on the task- run 2 laps, rest for 6 laps, and repeat.  At around mile 20, I caught a second wind, which was the opposite experience I have had running a marathon.  I had three more legs to run, told Christine “I am feeling good, I am going to do these fast”.  These last three legs were my fastest of the race.  Christine was hurting bad by the end, so Emily and I picked up an extra lap to cover Christine’s last leg.  That left Nolan to finish the last leg and the race for us.  We wanted him to cross the finish line for our team, and the math of the of all the laps made that happen.  We finished just under 4 hours, so now I can say I finished a marathon under 4 hours.

I definitely underestimated what it would take to finish this relay.  Normally, a 6.5-7mi run is something that seems absolutely doable, but when you pair that with constant cold temperature, and stopping and waiting a majority of the time, it gets a little more difficult.  Next year I will be more mentally prepared for the race and hope that we will get a better time…as long as Nolan is back on my team.

Let’s Talk About It – Mental Health

Life is hard.  We walk around thinking we may understand something.  Thinking we understand people and how they work.  In reality, there are some people who do not have complete control of their thoughts.  They struggle with mental health issues that can morph into completely irrational behavior.  These people might be a co-worker, friend, family member, or it could even be you.  You never think you know someone who is struggling with mental health until something terrible happens.  Then the floodgates open and people start talking about it, and you discover you know a lot more people with issues that you never realized.

Mental Health: Tony's friends
Our crew in college

Growing up in the Filipino community in our area, you are bound to cross paths with most Filipinos your age.  Most times it would be at a house party, wedding, or cotillion.  I met Tony in college when we were both part of a Filipino organization at school.  Have you ever met someone that seemed to know everyone? He was that guy that everyone knew and loved.  Tony had the kind of personality that people wanted to be around.  He always made people laugh and he was always down to help anyone.   We shared many meals, drinks, and laughs together over the years at countless parties, trips, and gatherings celebrating all angles of life.  Just as life does, things have been busy the past few years.  I have kept in touch with his sister, but we all have our families and different priorities from our college days.  We all still managed to see each other for Christmas and a birthday or two during the year, but it is a long ways away from our daily lunches, dinners, and parties in our early 20s.

Me and Tony in NYC
Me and Tony in NYC

Tony took his life on September 22, 2017.  Tony was only 36 years old and had a wife and two young girls.  From the outside it seemed that he had a completely happy life, but the news that followed his death was that he was dealing with some mental health problems. The thing that makes me most sad is how alone he must have felt in those final moments.  Thinking that the only way out of whatever hell he was living in was to end his life.  For us survivors, it may seem like the selfish path.  But we have to understand that this was not Tony making that last decision.  It was the illness that took over his mind and body.

Mental Health: Program at Tony's funeral
Program at Tony’s funeral

Before Tony, I had never personally known someone who had committed suicide. There are still moments that I think he will be at our Christmas party next weekend.  Then I remember that he isn’t only gone from me, but from his close friends and family.  It shatters my heart every time I think of his wife and two girls.  And I fight with myself all over again about being mad at him for doing this, only to realize it WAS NOT HIM.  I choose to remember the REAL Tony.  He continues to be loved by so many, and the memories we have of him will live on in our hearts.

I’ve had many conversations about Tony and about mental health since his death.  The more I talk about it, the more I realize that there are still people hiding because they do not want to admit publicly that they have been down dark roads. Some of them I consider close friends, and I had no idea.  I don’t want to not know again.  I hope we can all talk openly about the issues we have and, as a community, help each other.  And when friends and family are not enough, there are professional services that can help out.  I know it is much easier said than done and I am sure there is a certain tone of naivety in my wishes, but we have got to try.  If you think you see someone struggling, offer help. If you are struggling, find help.

Tony’s friends created pieces in honor of him with proceeds going to various mental health awareness organizations and to Tony’s family:

pea-be.com – Let’s Talk About It Pins
Let's Talk About It - Mental Health
Let’s Talk About It – Mental Health
Crowdsigns.com  #tonedef42 #letstalkaboutit Shirts
Mental Health: #TONEDEF42 #LETSTALKABOUTIT Shirts
#TONEDEF42 #LETSTALKABOUTIT Shirts
GoFundMe.com – Ongoing fundraising for Tony’s family
Mental Health: GoFundMe
GoFundMe for Tony’s family

My Giving Tuesday Charity – RMHC

Giving Tuesday

As we officially enter the holiday season with the completion of Thanksgiving, there are a bunch of days that follow with snappy names used to boost businesses big and small. Many people (including myself) searched for deals on Black Friday, Small Business Saturday, and Cyber Monday.  Now that the holiday decorations are up and the weather gets a little cooler, our thoughts start going toward the people who need help.  It is the season of giving, and it all starts on Giving Tuesday.

My family has been blessed because we are fortunate enough to have been on both sides of charity.  I have said many times how the Ronald McDonald House kept our family together when we were at our lowest.  They took care of us when we did not know we needed help.   I am forever in debt to that organization.  In return, I will continue to sing their praises and share my experiences with the House. Actually, they were our Home.  Our family was together, so wherever my wife and my daughter are, that is where I am calling Home.  In addition to sharing my story, I will raise both funds and awareness for the Ronald McDonald House.

If you can, please donate to the Ronald McDonald House.  You can donate money, volunteer to make meals for families, or even buy something off of their Amazon Wish List.  I have done all three of these things for the organization, and it is incredibly satisfying knowing that my donation goes directly to the people who need it most – the families who want to stay together.

For more information on Giving Tuesday, visit givingtuesday.org and you can see what other charities you can donate to on this important day.  Last year over 100 countries and millions of people took part in this special event.  I hope this day continues to grow and more people get the help that they need.


Video from givingtuesday.org

#WorkoutStreak Challenge – Thanksgiving to New Years!

I don’t want to wait until the New Year to consistently start my workouts again like some people do, so I am starting a #WorkoutStreak challenge.  I started yesterday on Thanksgiving and it will go till (at least) New Years.  I always have had issues with being stuck doing one kind of workout.  For instance, when I was marathon training, I was only doing cardio or running-related workouts.  Before that, I did a lot of strength training at the Sweatshop.  I never have had a good balance between cardio and strength training.  For this challenge I will mixing between yoga, running, and strength training.  The requirement for every week is that I do at least two yoga workouts, two running workouts, and two strength training workouts.  On the last day it can be a wild card day – any workout.

Yesterday I started with yoga.  Because of the amount food I inhaled during Thanksgiving, I decided to do Caley Alyssa’s cardio yoga again on Beachbody On Demand.  This time I opted to do the more difficult track and used the yoga blocks less.  As you can see, there was a good amount of sweat steadily streaming me into my eyes.

#WorkoutStreak Challenge Day 1
#WorkoutStreak Challenge Day 1

Everything is better if you have a group to join you! Who wants to join me? Leave a comment below to let me know if you want in also!

The #WorkoutStreak Rules:

  • Challenge goes from Thanksgiving (11/23/17) to New Years (1/1/18)
  • Workout every day in any way you like: gym, running, walking, yoga, etc
  • Use the hashtag #WorkoutStreak with a picture/stats from your workout
  • (optional) Follow me on Instagram or Twitter so we can track each other

Let’s get going!

Thanksgiving 2017: All that I Am Thankful For This Year

Happy Thanksgiving! There are moments in life where things just seem to difficult and I struggle to find happiness.  I think that is part of growing up. Once you open your eyes to all of the things you have to pay attention to like work, bills, health, and your future, life seems to weigh heavier on your shoulders.  But once you stop and look at all the things we have been blessed with, the load does not seem so heavy.  Here are the things I am thankful for this year!

Finishing Another Marathon
2017 Chicago Marathon
2017 Chicago Marathon

I did not think I could do it again, but I did it once again! Training was very challenging because this time I had to schedule around my daughter.  In the end it made it all worth it because I worked so hard to get to that start line and cross the finish line.  And I swear that I will write up a race report on that race!

Fundraising $5700 for the Ronald McDonald House
Team RMHC
Team RMHC

I still cannot believe that I was able to raise $5700 for the Ronald McDonald House this year.  I had never been a part of such a motivated fundraising team, but I am glad I was able to give back! They have done so much for my family and other families it was easy to ask people to donate.  In total, Team RMHC raised $1.3 million during the Chicago Marathon, the most in its history.

Supportive Work Environment
My work crew
My work crew

With all the craziness in my life, my work has been incredibly supportive and flexible with our situation.  They allow me to be there with Justine during some of her therapy sessions as well the tons of follow-up appointments.  My work shows that they are investing in me by allowing me to do training as well as pay for classes for my masters degree.  And of course they help me pay for our house and put food on the table.  I am so fortunate to work for a company that takes care of their employees.

Incredible Friends
Friends celebrating my birthday
Friends celebrating my birthday

We may not get to see each other nearly as much as we would like, but I know we are always there for each other.  We are at a stage where our kids are now friends and we see our relationships mirrored in theirs.  Long gone are the days of drinking and partying till the sun comes up and here are the days of slowing down and enjoying life and each other.

Loving Family
Our Family in California
Our Family in California
Justine's cousins in IL
Justine’s cousins in IL
My mom at Justine's birthday
My mom at Justine’s birthday
Family
Family

I am blessed to have this family, both on my side and on Jaz’s side.  It is sometimes hard for them to see us struggle, but they do all they can to help and make us smile.  Family means so much in our culture.  We learn that our family is our life very early on and just like everything else, we truly understand it when we grow up.  The support and love we receive from our family is what pushes us some days, and they will always be with us no matter where they go.

Happy Thanksgiving to you and your families!

Compassion – Finding It When We Needed It Most

Before Justine was born, compassion was something that I knew existed but never fully understood.  I donated money when my friends would fundraise for a charity.  I helped cook meals for the homeless at shelters.  And I even collected money for the American Heart Association the first two times I ran the marathon. I knew these were all good things to do because it helped people.  For the most part, that is where my thinking stopped.  I never thought of the impact I had on these people’s lives or what it meant to them to contribute to their cause.  I just knew people needed help, I blindly helped them and called it compassion.

Then Justine was born.  We were already trying to figure out how to survive being new parents, but with all of Justine’s complications early in her life, we were drowning.  Each of Justine’s seizures pushed us deeper and deeper into a pit of sorrow and anger.  And we needed help. Desperately.  I just needed to look around to see that help was there all along.

Justine in the NICU
Justine in the NICU

The nurses in the NICU are people that you only hear about and never see.  They are working tirelessly in the background doing everything they can for  you and your child.  They are your eyes and ears to the hospital and they have such compassion for the families they help.  One of Justine’s first nurses made such an impact on us, Nurse Ann.  She would always make sure we understood what was happening to Justine, whether it was a new medication or a new blood test.  She was so great with Justine and also with us.  She even had a conversation with me about how I needed to go home and get some sleep one of the nights I stayed by Justine overnight.  She cared.  In the short time we were at Northwest Community Hospital, she always told us the truth.  When we asked if we should transfer Justine to Lurie’s downtown, she agreed, with no hesitation. She was there to see Justine get better.  A newborn she had just met.

Compassion form NICU Nurse Ann
Nurse Ann in the background

When we finally did transfer to Lurie’s all of the nurses in the NICU lined up outside to say goodbye to us.  I remember thinking how many times they must have done this in their career and if they ever wonder if the child is going to make it.  I wondered if they thought if Justine would make it.  I wondered if she would.  We hugged everyone before we left in tears because they were so good to us, especially Nurse Ann.  Throughout the 47 days in the NICU we crossed paths with many NICU nurses and nurse practitioners who showed the same kind of compassion that Nurse Ann did that first day.  I never knew how important it was until I was receiving it from others.

 

11/20/17 – Cardi-yoga

I was planning on running with BWRC today for their Monday 4mi and hill workout, but Justine is still getting over her fever. And today I think she just plain out had enough of any medicine. Each time we had to give her the scheduled Motrin or Tylenol she was scream bloody murder and turn on the water works. She hasn’t acted like that since the summer where she’d throw a fit of something isn’t going her way. I knew this time it was related to her illness so I made sure to give her extra rubs on the back and tight hugs today. Since Jaz cancelled her trip to San Francisco because of our sick one, I thought it would be a dick move up leave her with the screaming child while I go run.

In its replacement I did a Beachbody On Demand yoga video – “Cardio with Caley Alyssa“. I have made some progress with my yoga over the past couple months dating back before the marathon. I’ve done Insanity in the past so I liked the Beachbody workouts and now with this On Demand app, you can pick from a ton of different workouts from yoga and Pilates to Insanity and P90X. Each week they send an email to you about which workouts you did for the week as well as how much time you worked out with them. And when you slack off and don’t do any workouts, they email some motivation. It’s actually pretty nice.

Progress email from Beachbody

I have definitely noticed that my upper body is stronger and my hips and legs seem to have more mobility as well. The core still (and probably always) will need more work. I am sure it has gotten stronger but I’m still having to stop every now and then to rest in “Child’s pose”.  Eventually I will take another yoga class so the instructor can show me proper form, but until then I will stick my videos on Beachbody and maybe even hit up some Hip Hop Abs with Shaun T!

Original image from Beachbody On Demand app

It’s Never Just a Fever

Today was a day!

Last night I went to bed at 2 in the morning because I had to defeat the rebel alliance in Star Wars Battlefront 2. Full disclosure: I am pretty terrible at the game. An hour and a half later I wake up to Justine moving around because she is awake. Since she is non-verbal she doesn’t announce that she is awake, but she still wants to let you know. She rocks from side to side roundhouse-kicking me and my wife until we wake up. Jaz normally wakes up first and I am able to fend off the attacks in my sleep. Jaz wakes me up and tells me Justine’s fever has gone up. This instantly launches me in to doctor mode. Kids with a diagnosis that contains epilepsy are more susceptible to febrile seizures than kids who don’t have the diagnosis. We found out the hard way in 2013 when Justine had a seizure that lasted for almost an hour because her temperature spiked (that’s a story for another time).

We start putting cold washcloths in her chest, back, and head. Her fever at this point was at 102.3°. We believe the last time she had a seizure in 2013 her fever was around 102°. I am naturally terrified that this latest illness will bring on another seizure or even worse a cluster of seizures. I’ve seen kids with the same diagnosis suffer from these same high fever seizures and it is so devastating for the parents. They could go on for months or even years seizure-free and then they are pulled back all the way to the start with these terrible seizures. Another problem we run into with Justine is that because she is non-verbal, we have trouble communicating to her. She needed to have some fever medication to feel better but she doesn’t understand that when we say it to her. So because she isn’t feeling well she does not want to eat or take any medication.

We have run into this situation before so I had to give her a Fever All suppository in order to get the fever down. Remember, this is at 3:45 in the morning. Pretty heavy stuff to do on an hour and half of sleep. We continue swapping cold washcloths on her body because her body heat warms them up so quickly. Of course she is screaming because it is not at all comfortable, but we must get that temperature down because of the possible seizures. It always feels like we are racing against the clock in these situations. Finally her fever dips a little to 101° at around 5am. Jaz and I are exhausted and Justine seems to be comfortable but she isn’t really eating. With fevers comes risk of dehydration so we decide we need to go to urgent care when they open. But first we need a little more rest. We slip in and out of consciousness for the next couple of hours, waking with the ear thermometer in hand to check Justine’s temperature.

At some point Justine falls asleep too with the wet washcloths on her so I remove them and replace them with a sweet Star Wars blanket Jaz got me for my birthday. She wakes up around 8am or so disoriented and her fever is back up to 102°. Adrenaline kicks in again but it is time for her daily seizure and dystonia medications. She luckily takes her seizure meds but has no interest in any more food or formula, including her dystonia medication. It is here when I start getting frustrated. I have these moments when I start feeling overwhelmed with our situation which can either spiral out of control or I am able to control my thoughts and focus on the task at hand. In this case, it is getting her fever down again. I give an audible grunt and Jaz knows it is time we switch off and she give it a try. She is unable to get her to eat any more so we book an appointment at the closest urgent care facility on a few minutes away. We drive over there to find out their computer system is down and they never received our appointment request (I made it online) and the visit would take 2-3 hours to complete. I said “no thanks” and drove her to the doctor’s office Jaz and I normally go to instead.

Since the doctor had never seen Justine before we had to go thru the whole medical history that I have committed to memory. Phrases like “seizure activity at 10th hour of life”, and “KCNQ2 encephalopathy” are things I never expected to say as a parent but need to remember anytime we meet a new medical professional. The doctor found no infections and said it was just viral, probably something she caught at school. With the continued risk of seizures and dehydration, the doctor instructed us that if she isn’t eating by mid-afternoon, to go to the ER so she can have IV fluids. I knew that an ER visit might be in our future when she stopped eating. Now it was becoming more real.

We drove home and tried to get her to relax, sitting in her sitter, watching YouTube videos of her favorite group Fifth Harmony, and continuing to keep her cool with cold compresses. Finally at around 3pm she ate a couple of bottles, including her dystonia medication she was supposed to take in the morning. Finally! A little progress. That med normally gets her a little sleepy so we were able to all nap, again slipping in and out of consciousness, obsessively checking her temperature.

She wakes up again crying because she has spiked once again over 102° which once again launches us in to try to get it down. More cold washcloths and this time two suppositories as directed by the doctor slowly get her temperature down to around 101°. We decide to hang out in the basement where it is a little cooler and Justine gets to play with all of her toys along with some new ones my friend Carrie dropped off earlier in the day:

She takes her nighttime medications with no fight (thank God!) and another session of cold wash cloths and extra snuggles and her temperature is down around 99°. With fevers, children’s temperature normally spikes while they are sleeping (which was proven today) so I am fully expecting to wake up in panic tomorrow morning to start all over again. But this time I won’t be up playing video games all hours of the night. Instead I wrote this blog.

These types of crazy days are few and far between but when they do happen I’ve learned to stay cool and give both Justine and Jaz what they need to get through the day. I think of these days all of the time because of the increased risks of seizures and how I need to react to the roller coaster ride of the day. As parents, there are days we just simply need to survive to make it to the next day. As exhausting as it can be, we do it for our children, so they have the best opportunity for success. Just as important, it gives my wife and I the opportunity to work together and listen to each other’s ideas to get the job done. I like to think I have gotten better during these stressful days, but it is because I work with Jaz to get it done.