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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.

 

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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

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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.

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11/15/17 – 400m Repeats and a Goal

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.

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Comparing

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.

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11/13/17- 3 Miles and 9 Hills Later

This was my first outdoor run since the marathon. I️ finally got over my cold and it was time for me to get out there. I was a little worried at first because it’s been so long but I figure I’ll do a short distance and it wouldn’t be that bad, right? Every Monday the BWRC meets up at a park near our house so it is hard to pass up. I️ have been trying to go the past couple of weeks, but I only go if Justine is napping after school. And of course she hasn’t been doing that the past couple of weeks. Well today when I got home from work she was asleep! So I got ready as fast as I could and jumped I the car to head to the park.

My Sweatshop/running friend started running with the group a few weeks back so I was glad to see her. She is faster than me but she hung back and kept pace with me. I wanted to push it a little bit since I hadn’t run in a month so I was doing my run-walk at a faster pace – more like 10:30/mi during the run according to my friend and it felt comfortable. I think all that yoga I had been doing the past month had paid off.

My splits:

  • Mile 1: 10:39
  • Mile 2: 11:27
  • Mile 3: 11:51

Me and “Wheels”

We ended up doing just over 3mi because I wanted to have some gas for the hill sprints. I do enjoy running hills but I had never run them in a group before. I wasn’t sure if I would be intimidated by them or pushed by them. The group is so great that they were cheering me on as I ran up that hill 9 times. One of them even hung back with me to make sure I finished. It is so great to be a part of this group.

Great run to come back to finally shake off the cobwebs left from the marathon. I was extremely motivated and I’m sure I’ll be sore tomorrow. Gotta admit, I’ve missed this feeling.

Busse Woods Running Club

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Balance Training for the Marathon

It has been a month and two days since my third Chicago Marathon.  The last time I completed a marathon was in 2011, back when it was just me and Jaz and we could really just do anything we wanted anytime we wanted.  That was two years before Justine came along and completely changed how I viewed life.  This year I wanted to tackle this accomplishment again, now knowing I had a little more behind me – the experience of being a parent.

This year, to add more motivation to stick with the training, I fundraised for the Ronald McDonald House.  They helped Jazmine and I so much while Justine was in the NICU at Lurie Children’s Hospital.   It was a very different experience fundraising for them compared to other charities I have fundraised for in the past.  We have a Facebook group where all of the current and past runners for RMHC come to share experiences both on the course and off.    I cried reading some of those stories, sometimes because it sounded so much like us and sometimes because they were not as fortunate as us.  I knew that this group was what I needed to keep me going through training.

In my previous marathons, I did not have to coordinate times around a child’s sleep schedule.  As Justine gets older, her sleep habits have not been consistent.  Some nights she sleeps 10 hours, some night only 6 hours.  She may or may not take a nap in the middle of the day.  And the worst of it was that this summer we were weaning her off of one medication, so she would wake up screaming when she would finally sleep.  We are convinced she was going through some kind of withdrawal.  For about 4 months she was not a happy camper so that led to very early runs for me, running at lunch time, or right after work to make sure I was home as soon as possible to relieve Jaz of her Stay at Home Mom duties.  Occasionally Justine required much more attention so I had to skip a few scheduled runs.  I admit, early on I was irritated when I would miss a run.  If you are a runner you know how missing a run can really mess with your head.  I came to the realization that my situation was not like others and that everyone has to deal with their own obstacles to get their training in.  Life is far from perfect, but that should not stop you from doing the things you want to do.

I am not a fast runner.  Some may call it jogging, or quick walking.  My goal this entire season was to just finish the marathon.  Because of this, I take a longer time finishing training runs than most people training for a marathon.  It was ok early on.  But when the mileage built up to 6-7 mile runs during the week and then up to 16-20 miles over the weekend, that is a lot of time away from the family.  In previous years after those long run Saturdays, I would just crash in my bed and fall asleep for hours.  Now, having a family, I did not want to miss out on our weekend together so I always made it a point to go out with Jaz and Justine right after I got back from my long run.  As much as I needed the long run for my training, I needed the family time with Jaz and Justine for balance.  I never wanted to appear selfish about taking too much time away from my family while training for the race.

I was satisfied with how I trained this year.  I trained smart, backing off when I felt like I needed to and pushing when I knew I had more in the tank.  My biggest worry through the entire season was making sure I was still a good father and husband to my family.  All of the hours I ran, or thought about running, or getting ready to run, or going somewhere to run was time away from my family that I knew was necessary for training.  I wanted to be healthy enough to finish the marathon as well as be functional and not too sore to hang out with my family.  That was the hardest and most rewarding part of training, balancing running with my life.  And in the end, I hope that I am a better father and husband for it.