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.
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.
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.
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:
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
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.
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!
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
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!
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
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.
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.
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!
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.
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.
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.
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
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.
It has been quite some time since I have done any work on a track. I think the last time was when Justine was still in the NICU and I escaped away to Lake Shore Park to get my mind off of the craziness of the hospital. I remember I was just so happy to be running and doing something “normal”. Over the past several years, running and working out has served as a way for me to clear my thoughts. When I am in the middle of a workout, all I need to do is concentrate at the task at hand. All of my worries and concerns will still be there when I am done with my workout. So this time is just for me.
I told Jim that I want to run a sub-30 minute 5K. It seems like an attainable goal IF I put in the work. He told me I needed to start incorporating speed and hill work into my training. In training for the marathon, I never really focused on speed since it is all about the distance. It was hard work getting in all of those miles every week, but there is no time limit. I knew stepping onto the starting line this year at the marathon that one way or another I was going to finish the race. And I did! But now this goal for the 5K is different. It is time based so just putting in the number of miles isn’t the only thing I need. Now it is about what I do in those miles: quality over quantity.
I hadn’t done 400m repeats in a long time so I wasn’t sure how I would do on my first attempt. I did a 1 mile warmup (not shown below) and then did 8x400m with a 1200m cool down. Ideally, the 400s would be at 5k pace, but like I said, it was my first try, so I just went with what felt good. I never knew how difficult it was to hold a steady pace for 400m. The wind on the backside straightaway did not help either.
Ultimately, I think it went well for my first try. I learned I know nothing about pace so I need to focus on that. When you are as slow as I have been, there is no rush to get to that finish line. “I’ll get there when I get there”. Now with this goal in mind I want to start pushing my limits to see what I can achieve. I’ve seen how far I can go. Now it’s time to see how fast.
At some point in our lives we have all done it. We look at someone and start comparing things whether it’s material like money and clothes or something intangible like happiness and love. At the end of the day no one’s life is perfect and we should be happy with life or change things in our life that may lead us to happiness. Most of the time with me, that is much easier said than done.
As a parent with a child with special needs, I almost always compare our lives with people around us. When it is just the three of us, I am ok. We live in our world where we can be happy and make our lives easy. But when we go out in public like the mall or at a gathering, I can’t help but wish for the lives of some of the other parents. I’ll see a kid simply walking next to her parents, or a toddler helping himself to some crackers and it will break my heart. I wonder if Justine will ever do any of those things. She is 4 years old, the age where she should be discovering so much of the world, but she is unable to explore it on her own two feet. And even worse, if she wanted to, she is unable to tell us.
I fear I will never get to dance with her or hear her say “I love you, daddy”. These are the same fears I have had for the past 4 years. There has been some slow progress which is always good, but I can’t help but wonder how it feels to just know the sound of your child’s voice. I would give anything for her to coming running into my arms when I get home from work. I won’t get to enjoy these things today, or tomorrow, or anytime soon. I feel like we have earned it. We work so hard to give her every opportunity to develop with therapy sessions, multiple specialists, and assistive equipment. And we have been at it for 4 years. I feel cheated.
But then Justine does something to remind us of what is important in life. She laughs to herself about her silly hand. She does this thing where she raises and extends her arms like she is the conductor of an orchestra. Or she will look right at me, in complete amazement as I sing “Rainbow Connection” for the millionth time to her. SHE is happy.
As far as she is concerned, she is able to get what she needs from us. She gets to hang out with friends at school and with her cousins, aunts, and uncles from time to time. And she has her grandparents. All of mine had passed away when I was very young so I never understood that grandparent-grandchild relationship. Now, I absolutely get it. Before everything else, I want HER to be happy. Sure she may get mad at us every now and then because she has to go to her therapy session, but for the most part she is happy. When I look at her smile and the progress she has made, it is all worth it.
I will probably still have my moments of weakness and be jealous of families around me living their “normal” lives. But they are not my priority. Justine is. She has everything she needs and so do we.