Thursday, May 1, 2014

The tight rope walk of parenting a CHD teenager

Some days are difficult; everyone has their days when things are just not good. You put on a good front, put a smile on your face and deal with the cards you have been dealt. Even as an adult and parent there are times when you feel as you are going to fail, or have failed as a parent but in the eyes of your children most parents are the “best Mom/Dad in the world”  Everyday it is as if you are walking a tight rope.

As children grow and age, teenagers begin testing and developing the interpersonal and occupational roles that they will assume as adults. Therefore it is important that parents must treat them as young adults. A teenager who thinks poorly of him, is not confident, hangs around with gangs, lack positive values, follows the crowd, is not doing well in studies, is losing interest in school, has few friends, lacks supervision at home is more vulnerable to peer pressure. This is true not only in all children but especially in children with Congenital Heart Defects. They are different, they cannot  or are not permitted to do what the “normal” kids can do… so not only do we parent as the “normal” parents but we encourage what you can do, help build scar self- esteem, worry, question and sometimes are over protective.  It is my job, as a parent to promote and support the physicalemotionalsocial, and intellectual development of my children from infancy to adulthood. It is my job as a heart mom to protect him and ensure he is being properly taken care of. It is also my job as a parent to allow him to have and enjoy his life as a child and teenager. That is his right.

I believe there are 4 types of parenting styles (Authoritative, Authoritarian, Permissive and Uninvolved.) I believe I subscribe to Authoritative parenting style. - Authoritative parents rely on positive reinforcement with minimal punishment. Parents are more aware of a child's feelings and capabilities and support the development of a child's autonomy within reasonable limits. There is a give-and-take atmosphere involved in parent-child communication and both control and support are balanced.


Last night, we had another moment. Let me begin with a little reference, he is a 13 year old boy with complete AVSD, repair. However there are a few little areas in his atrial wall and valves where there is still leakage. We have been advised against contact sports, i.e. wrestling or football.  I realize that is a difficult pill to swallow for a boy who wrestled for 5 years before his CHD of AVSD diagnosis.  After dinner but prior to taking his sister to Tae Kwon Do, I asked him if he was still planning on attending Heart Camp, in which his response was yes, only to be followed up with “ I want to go to camp like I did before” … and “I saw the Bones shirts and want to go to Steve’s Greco Roman camp again this summer.”   
I honestly was taken off guard and it took me a moment to get my thoughts together… because the last thing you want to do to a child that already feels different, weak, limited and not “normal” is limit them even more. 

I responded, “we will have to check with your cardiologist to see if you are permitted. You know, Dr. Lovig has previously advised against contact sports”.

In which I received a heavy sigh in return, “he might say ok, I wrestled with larger holes in my heart before”. 
  
I responded, “ yes, yes you did, but the very last thing I want is for you to put pressure on your heart, the holes to get larger, you to have a heart attack or worse, and if the holes tear and expand you may need to have another surgery.” 

He responded, “ I am going to need another surgery anyway, so why can’t I just wrestle? Can I just try? I won’t overdo it” 

Looking at his face, he was in total disgust with himself, I wasn’t sure if he felt as if I was holding him back or or he lost all confidence at that moment. I didn't want him to feel helpless and understand where I was coming from, so I responded again, “we can ask their opinion, but I want you to listen to what they say and understand what the potential complications might be for you. I don’t know how you feel inside, and I don’t know what you are truly capable of doing, only you do, but I am your Mom and it is my responsibility to keep you healthy and safe. I want you to live your life to the fullest of your ability and I don’t want that to be cut short because of unnecessary chances. If they say no, maybe you can do another sport?” 

With passion he said, “I don’t want to do anything else, I want to wrestle, Mom. I just want to be a normal kid, like I was before”  

I responded, “we can as Dr. Lovig’s opinion, but I am not supportive of you wrestling. I know your Dad is not either. We got lucky, you got lucky and you may not get another chance like that and that is not a chance I want you to take. If Dr. Lovig approves then fine, but I don’t approve.  However I won’t tell you no, because it is your life and you need to make to your own decisions, I can only guide you and hope you make a good decision for yourself” 


As I walked out of the room, I said under my breath … I hope Dr. Lovig says no… he heard me. 

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