Too Strong For His Own Good



Lap 1



Diego had his 6 week post-op check up.  His face radiated with excitement when the cardiologist told him that he could participate in all physical activities.  He was thrilled that he would be able to play soccer at recess, participate in PE at school and practice with his soccer team.  He is an amazing young man with the determination of a warrior.  He was feeling good, both emotionally and physically. 

Diego is naturally competitive.  He is not one to give up on a challenge.  When his school’s annual Jog-A-Thon event arrived, I found Diego competing with his friends and himself to be better than last year.  He told me that some of the kids were teasing him by saying that he would not be able to run as many laps because of his heart.  Diego was determined to prove them wrong.  He said that last year he ran 19 laps so this year he wanted to run 20.  As his mother, of course a red flag went up.  I reminded Diego that last year he had not gone through an open heart surgery and he could not push himself to do more than his body would allow. 

Lap 2

Diego was happy and full of energy when it was time for his class to participate in the Jog-A-Thon.  He came around from the first lap looking tired, but was maintaining a good pace.  I spotted him as he was circling around from his 2^nd lap.  As I snapped a picture I realized that he was struggling.  The closer he got I noticed that the tip of his nose was a grayish blue.  I grabbed him and said that he needed to sit down and tears filled his eyes.  I realized that his pride was getting in the way and he did not want to stop; not even if he was close to passing out.  I began walking with him and explaining that he should be proud of himself for running even though he had surgery just 7 weeks ago.  It was an amazing feat and even bigger than the fact they he had ran 19 laps last year.  He was starting to calm down and seemed to be processing my words.  We continued walking another lap, and then he decided he wanted to run for a little bit.  He was emotionally and physically exhausted, but he was able to walk and run interchangeably for the remainder of the 20 minutes.  When the whistle was blown he had accomplished 9 laps.  He quickly found a place to sit down and rest.  All of his friends were very kind to come over and check on him to make sure he was okay. 

What scared me the most about the Jog-A-Thon was to realize that Diego’s competitive nature was stronger than his natural instinct that was telling him to stop.  I continued to talk with Diego to make sure he would respect his physical limitations.  If not, then I would not allow him to participate in soccer and other competitive activities.  Diego’s response was simple, “But mom, the doctor said that I had a full release”.  My response, “Diego, a full release does not mean that you are capable of doing everything, it means that you are allowed to try within your ability.” 

The following soccer practice Diego’s team had to run a lap around the field.  I have to admit that I was nervous.  I watched the team take off and within seconds “competitive” Diego was left in the dust.  I was concerned that he would push himself too hard again.  I met up with him on the track and was grateful to see that he had good color.  He seemed to be maintaining a good pace and dealing with the fact that he would not be able to keep up with his team.   The sweetest moment was when Diego’s teammates finished; they all ran back to Diego and walked the remainder of the lap with him.  



I feel that right now the most important thing for me to do is recognize and understand where Diego is physically and emotionally so I know where I need to be.  I needed to see him respecting his physical limitations.  He has to figure it out and understand it.  He is old enough and ultimately it is his responsibility to navigate.  I’m trying to observe quietly from the stands as a mere spectator.  In reality, I am paying close attention to whether or not he continues to respect his physical limitations while also making sure that he is emotionally okay.  I admit it; I’m tired of worrying and stressing.  I’m tired of the unknown and the lets wait and see.  I also know for every ounce of tiredness and frustration I feel he feels 100 times more…why?  Because he is old enough to understand and ultimately responsible. 







Stay strong and carry on...

By the 3^rd week after we returned from Boston, Diego was feeling stronger.  I think being at home among family and friends was the best medicine for him.  He is finally able to settle in to simply being a 9 year old boy with less focus on being a heart patient. 

Unfortunately, he has subtle hints that tend to whisper in his ear reminding him of his heart defect.  I’ve noticed when Diego plays the Wii or walks long distances that he seems to have some shortness of breath.  One day this week after school, he walked a long distance around the school building.  By the time we made it to the car he had labored breathing.  Later that evening I overheard Diego explaining to his dad that sometimes he has a difficult time catching his breath.  He commented that he thought he would feel better after having his surgery, not worse. 

I try not to hyper focus on any of Diego’s symptoms while at the same time being aware of how he is doing physically.  It is my understanding that the shortness of breath will continue due to the restriction created by the PA band.  Basically it is an indicator that the band is working to strengthen his left ventricle.  His 6 week post-op checkup appointment is scheduled for October 10, 2012.  Diego’s main objective is that the cardiologist will release him to play soccer.  We have been occasionally attending his soccer team’s games this season.  On the way home from the most recent soccer game, Diego commented that he desperately wants to start playing soccer again.  The closer it gets to his checkup the more eager he is to play soccer.  Luckily, he seems to know how to self manage his activity level based on how he feels.  We realize that it could be challenging for Diego to deal with the physical limitations he may encounter once his activity level increases after his post-op checkup. 

Of course, I also worry about his emotional well being.  He has the mentality to handle the situation, but that does not always mean that he is content with it.  Sometimes he is entitled to feel frustrated with the issues his heart defect creates.  He is being forced to cope with things that even as an adult I struggle with how to handle.  I feel when Diego is having an emotional low that is my cue to be strong for us both.  Those are the hardest moments; when there are only one set of footprints in the sand.  What he doesn’t realize is that I pull my strength from him.  It takes my entire being to reassure him that all is well with his heart.  The greatest moments are when we are walking together and he reaches to hold my hand.  In that moment, there seems to be peace surrounding us.  I cherish those moments more now than ever before.  It is the awareness that he is at peace that I appreciate most.  As a mother we do not want our young children to worry about whether or not their heart is strong enough to carry them across the soccer field.  When he has that skip in his step and smile on his face I relish in that moment because his greatest concern is whether or not Mrs. Kathy is serving the crispy chicken sandwich in the cafeteria, as it should be! I am grateful that Diego has the ability to overpower his emotional frustrations and continue moving forward.  I’ve always trusted that God knew what He was doing when He gave Diego the heart of a warrior. 

Diego's "Storypeople" creation he made during his healing