The scar continues to heal nicely. The bruising is getting lighter. His appetite and energy are back. He's sleeping peacefully through the night. And I stare at him a lot.
The body is so fragile.
Yet so resilient.
He asks questions like, "If I swallow something big, is it going to touch my pacemaker?" And, "How did the doctors put it in me?"
I try not to laugh or disregard his questions because I want him to keep asking and learning. I answer truthfully, sometimes vaguely. I love when the light turns on, and I can tell he understands something new about the amazing little body he has.
It's safe to say John has graduated. He has made it through a series of staged reconstructive surgeries to treat his critical CHD. I say "treat" because this is a temporary fix for an ongoing problem. Our family is now entering the unchartered territory of nurturing a social, active, bright little boy who happens to battle the daily struggles of living with HLHS. A competitive little boy who is eager to learn and keep up with everyone around him. A little boy who has become a pillar in our family. A little boy, who, in my mind is still a baby.
When I first sat down at my computer to write this post, I was planning to officially say goodbye to the past. I was going to briefly describe all the surgeries and procedures he's been through as an infant and toddler. But I just don't have the strength to come up with the right words and revisit those memories in depth. The truth is, I'm not ready to completely let go of "baby John" yet. His history is longer than most adults and I can't do it in one post. Much like the scar on John's chest, I am not yet completely healed from watching everything he's been through.
So I came up with a replacement goodbye. One that takes less emotional energy and isn't quite as scary. Having just come home from a hospitalization with John, I experienced the new hospital for the first time.
The new hospital.
Oh yes, it is quite impressive. It has so many bells and whistles and perks. It's just so new. But all this "newness" has me missing a few things from the old. The walls of the old hospital hold so many memories that altered my life forever. In a way, it feels as if my memories have been buried with that old hospital. I can't let that happen. If I don't write it down, then it feels like I'll forget. If I forget, it didn't matter - and that is almost unbearable. With that in mind, I'd like to say farewell to a building that has served our family well:
*Goodbye to all the young doctors and nurses. We are not young anymore. As my little John grows up, the rest of us are all growing old. Seeing so many familiar faces in the new setting brought me a lot of comfort. The best part about UI Stead Family Children's Hospital is the people. Thank you for reminiscing with me and remaining the same in the midst of so much change.
* Goodbye, Dr. Davis. You are not forgotten. Buildings can change, but your legacy is enduring.
* Goodbye "Elevator I to the 7th floor PICU". You were slow and old, but you helped me get where I needed to go when John was a baby, so I thank you.
* Goodbye to the PICU lounge community fridge. (Good riddance would be more accurate for this one!)
* Goodbye to the PICU lounge community bathrooms. (Definitely good riddance!)
* Goodbye red horse picture in the hallway. You helped point the way when John needed his echos.
* Goodbye cafeteria food. I know you're still there if I need you, but you have been replaced by hot, free meals served out of the PICU Ronald McDonald Family Room. It's quite fantastic.
So although I can't completely say goodbye to my baby, I will say hello to the absolutely stunning little boy he's grown into. In 2018 I resolve to focus on everything we do have, instead of the left side of his heart that's missing. I resolve to focus on all the beauty instead of pain. I resolve to admire his scar as a symbol of strength and perseverance.
Blessings to all of you in 2018!
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