Onward to Adventure!

All heart kids are different, that’s for sure.  One thing all heart parents will tell you, though, is that the journey of a heart parent is a difficult one.  Gaining fresh perspective throughout your journey is a must if you want to avoid losing your mind.  A couple posts ago I blogged about the Heart Parent Panel that I was on, and in this post I want to expand a little bit on one question that was asked to the panel and my answer to it. 

I’m sure I’m going to completely butcher the way this question was asked, but here’s how I will try to remember it: “How do you deal with expectations you might have for your child?”  The gist of this question, if I recall correctly, had more to do with schooling, sports, and the like.  The moderator, though, decided to ask me if I had heard anything about this on interactions here on the blog.  While I honestly haven’t, this is more or less how I answered:

Expectations will probably always be a struggle for us as heart parents, and while none of my children are school-age yet, it’s even harder having twins.  It will always be difficult not to compare Nolan to Grant, and that doesn’t even have to do with the heart stuff right now, it more has to do with the developmental stuff.  Grant is walking and feeding himself with finger foods, and that’s really awesome.  Nolan, however, doesn’t crawl, doesn’t walk, struggles to sit up on his own, doesn’t eat by mouth.  See where I’m going?  It’s hard.  But you have to almost look at the twins separately in order for you not to have lofty, unreasonable expectations for your child.  If you look at Nolan in a vacuum, any small improvement he shows is cause for celebration.  So while 5 minutes of assisted standing doesn’t seem like much compared to Grant, when looked at on its own, it’s awesome.  So step back, stop and think, and look at your child in his or her own situation and it won’t be so bad.  And the best part, you won’t beat yourself up over how they’re doing.

But still, it continues to be hard because our own crazy minds get in the way.  Case in point: the feeding tube.  Every now and then I get super-worried about the way future with Nolan.  One time I was at a G.I. appointment with him and there was this boy there that was around 7 or 8 and he had a feeding tube.  And I thought “Oh my God if Nolan has a feeding tube when he’s school-age, that’s going to be terrible.”  Suddenly I get caught up in how he’s going to be treated by his peers.  Whenever I bring this up people tell me “Oh kids are tough” and I reply, “No they’re not, kids are jerks…or at least, some of them are.”  And I just worry for him…nevermind that it’s YEARS away lol.  And then the cleft palate thing too…might affect his speech.  And I start to fret, “Isn’t it enough he has a bad heart?!”  And this is where you work yourself into a tizzy and you’re like “Eat, kid, eat eat eat right noooow!”  And you want so badly for him to make this miraculous turnaround overnight.  It doesn’t happen that way.  It’s a marathon, not a sprint.  So I have to say “Calm down, Chris.  Time is on your side.”  He is making strides, even though they’re so small, they’re strides nonetheless.

The best advice I can give, at this stage in our journey is this: ENJOY THE RIDE.  How’s that for a change?  Yes, you need to be on top of things, and yes there are days when it will be hard, and yes Nolan may or may not be able to run mad like other kids.  It will be ok.  Because it’s an adventure.  Enjoy it.  So maybe Nolan won’t be able to play baseball, basketball, or football…maybe he will.  If he doesn’t that’s ok.  Maybe he will grow up to be an amazing musician…or maybe he will grow up to have an incredible interest in Curling.  Crazy right?  I don’t know much about curling, but if he likes it, I can learn it with him.  And that’s an ADVENTURE.  Think about this: how many of you cared at all about CHDs before you knew about your child’s CHD diagnosis?  I’d venture to say almost none of you.  But NOW you’re deep in it and hopefully you’ve met some amazing heart parents, incredible heart kids, awesome hospital staff, etc.  It’s part of your life and you’re thankful for it.  So your life isn’t on a “typical” route anymore…so what?

Don’t get caught up in preconcieved notions about your heart child.  Let them be who they are and enjoy it along with them.  After all, you’ve fought so hard to keep them safe, healthy, alive…let them live.  The way I see it, you have a choice to make as a heart parent: you can choose to get caught up in the struggle or you can get caught up in the adventure.  I want to choose the adventure.  I choose to learn, I choose to advocate, I choose to fight this fight with my family…and God willing, I’m going to be better for it in the long run.  What do you choose?


About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on March 10, 2014, in life and tagged , , , , , . Bookmark the permalink. 2 Comments.

  1. Chris, this is a really great post. I shared it with our family. It hits so close to home with our twins and one being a heart baby, just like Grant and Nolan. We continue to thoroughly enjoy your blog. Thanks for sharing!

    • Hey guys, thanks for reading and commenting! I’m wishing you guys the best for both your little ones…it’s challening enough to have a heart baby, but when they have a twin too…whew! I’ll be praying for you guys!

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