On Friday, we're spending four days at Disney. What a perfect way to kick off summer! We'll ride all of his favorites, plus a couple he wasn't tall enough for last time. We'll eat good treats, meet characters, and swim.
We'll hang out with our friends, practice reading, go to the splash parks, and have lazy days watching movies.
We'll also have a visit to Nicklaus Children's Hospital. We've been advised that Jonas should visit the Neurodevelopmental clinic, just to ensure that he is developmentally on track. We have no reason to think anything is wrong with Jonas's development. However, having a complex congenital heart defect (CCHD) is reason enough to be evaluated, especially because he was delayed in his first year of life.
Jonas is also due for a check-up with his cardiologist in July, though we may be able to forgo it if we have to do a stress test and echo at Nicklaus.
These are all "routine maintenance" items, so to speak. Jonas is as healthy as he can be for having half a heart. He is happy, well-loved, and spoiled rotten by everyone around him. But the hospital is an anxiety-inducing place for us both, under even the most ideal circumstances.
Our heart journey has been relatively smooth, and I struggle with mentioning anything at all. We don't have weeks or months of hospital stays.
We don't have an uncertain path. We don't have any upcoming surgical procedures. We are not listed for transplant. We are not in rehab. These are things many of my dearest heart mom friends are currently experiencing.
I am thankful for every moment I spend with Jonas, inside or outside of the hospital. But this does not make me any less afraid. Fear is a constant companion in my life. I am not saying this to evoke pity or sympathy. This is just my harsh reality. I am always living with some degree of fear, for what the future holds for my beautiful, bright son. There are so many uplifting blogs online, detailing how one must remain positive, and cast aside all fear and doubt. If you've spent 5 minutes speaking to me, you know I am able to put a positive spin on anything.
But I remain pragmatic. There will always be days that CCHD is the last thing on my mind. There will always be days that CCHD is the only thing on my mind.
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