Friday, September 13, 2013

The other night as we were making dinner Caden said to me that he and Cameron were special because they had heart surgery.  I had to tell him that no, it is just him that is special for heart surgery.  He doesn't fully realize how special he is.  Only .01% of babies born in the U.S. have what he has.

I get anxious before his cardiology appointments.  He goes in next month for his annual checkup.  The fact that he has been on annual checkups for several years now is amazing in and of itself.  While I don't believe that he is ready for another surgery just yet, we were told that his next replacement surgery will be between the ages of 7 and 10.  He'll be 7 in November.  It scares me.

There was a moving - and haunting - experience last weekend that will never leave my memory.  I hate to see Caden struggle to keep up with his friends. I hate the fact that he is "special" gets thrown in my face every once in a while.  I don't notice his setbacks most of the time.

Last weekend we went to a hometown football game with friends.  Caden could not keep up with the other kids running around and jumping down and climbing up a small (3 foot?) retaining wall.  He would try so hard to get up, then have to run around the hill to the gate, or sit down and scoot until he could jump off.  By the time he was up or down the kids had run off to another part of the football stadium and he'd be lost, searching for his friends.  This happened over and over and over and it was truly heart breaking.

I watched this for a few minutes, seeing the disappointment on his face over and over again.  I went down and stood by the retaining wall watching the other kids so that I could tell him where they went so that he could catch up with them.  He was so tired with red cheeks and breathing a little heavier than normal.  I told him what he already knows - that if he's tired he can come sit with us and watch the game.  Of course that was not an acceptable option for him.  I kept reminding myself that he's 6.  He wants to run and play and have fun with his friends.  He wants to be able to do what they do - and he SHOULD be able to do.  I hate that for him.  Hate it.  The look of defeat on his face, the look of exhaustion and disappointment.  I would do anything to change that for him.

I worry that this is what happens to him every day at recess.  He won't talk about it which only heightens my suspicions. I wasn't exactly popular in school and the last thing I want is for my child to be left behind or "uncool" for something that he cannot control.  Caden is COOL!  He's so fun and so witty and he deserves to have fun like the other kids without getting behind or tired.

Like I said, I get anxious before cardiology appointments.  I can't help it.  The closer he gets to appointments and the bigger/older he gets the more I worry.  He's eating an amazing amount of food right now, which most likely means that he is not ready for surgery.  When the conduit needs to be replaced the most common signs are extreme exhaustion during normal activities, heavy sweating and a lack of appetite.  He has none of those during the average day.

Being a heart mom is hard.  I am so proud of him, for something that he doesn't even comprehend yet. While on the other hand I am scared to death for him.  I would do anything to make his heart healthy.  To change the fact that he'll need future surgeries.  There is no way around that.  He will get bigger (he's so tall for his age!) and the conduit they placed in his heart as an infant will soon become too small or will calcify over time.

I wish I could convey my own heartbreak in a way that would suffice over text.  I can't seem to bring words to the feelings that I have for Caden and his heart defect.  I don't blame myself for his heart defect.  All I can do is be strong and take things in stride.  I will explain to him the hows and whys of the ways that he is "special" as time goes along, I only hope that he has enough time before the next surgery for him to be able to truly understand and accept the fact that he will need surgery again.  I know if I were him I would be so scared.

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.


Lyndsey said...

Caden is a strong boy. Fortunately for him, he doesn't have any memories of things being any different than they are now. I spend a lot of time worrying about things with my children because of things I experienced as a child. It's hard to think of them as separate from us, but they are. Maybe you could ask his teacher what goes on with him during recess and if she's not sure, if she could keep an eye on him for a day or two for you?

You and Paul are very strong, caring parents as well. Having a stable family life with loving parents really helps in any situation. In regards to the dinner comment about him and Cameron, (if it comes up again) you could tell him that all people are special in one way or another and give examples. Does he know he needs to have another surgery in the next few years?

Anonymous said...

As you know, I don't have kids. I want them someday when I'm more settled and can provide for them in a way I don't feel I am able to right now. You and Paul ARE great parents. Some kids (and people in general) are more special than others. I don't necessarily mean that in a quantitative or qualitative way. Caden is special because of his heart. Caden isn't less special than Cameron or vice versa. They are special in their own ways. Cameron isn't special because of one defining characteristic, instead he is special because of who he is. I know that you worry about him being with other kids and not being able to participate in activities where he shows interest. I would have felt the same way watching him play with his friends. It is heartbreaking to know that he'll struggle throughout his life in one way or another. That being said, his heart doesn't have to define who he is, nor do I think it will from his perspective. I don't think he'll fully understand what his condition means for a few more years, possibly into high school. He will need additional surgeries; you'll prepare him and face them the best you can. People in general have to learn to overcome their shortcomings and he'll do the same, in time. As I've gotten older, I've realized that the friends who wait for you and make you feel joy are the ones you want around the most. Kids don't understand that, but they adapt to it, they just see other small humans to play with. He'll find his own footing and build around that. You're not wrong by any means for noticing him and wanting the best for him. His heart is special. Make sure he knows that his heart is not the reason HE is special.

Your brother :)

Eva's Mom said...

I also get anxious before my son's cardiology appointments. Most of the time I can forget about his health problems. There is no forgetting, however, when you are watching the images flash across the monitor as the tech is performing the echo...or waiting for the physician to come in and discuss the findings. It is a scary place. It is a place where all of my abstract fears are placed in concrete terms: heart pressures, degree of stenosis, dosage of drugs, urgency of need for surgery. Sending strong thoughts your way.