Our normal
We just came back from the pharmacy. Which is only 6 minutes away walking time, may I add. I love our new place!
The pharmacist behind the counter commented on how little Justin is, not even a year old, and constantly on Amoxicillin.
“Why?,” she asked.
“He’s aspleenic,” I nonchalantly replied.
“Aww, poor thing.”
“Yeah, and he has some heart issues, too.”
“So, how is he doing?”
“He’s fine now, but his condition is not ‘fixable’.”
“How are you and your husband doing?”
“We’re fine, now. I think it’s most stressful when we’re in the hospital. But, now, everything is pretty normal.”
Now. Normal.
On our walk back, I contemplated about our meaning of normal, surprised at myself for realizing that we have gone back to a normal that does not involve constant, obsessive compulsive stress every single day.
Normal is:
1) Driving Justin to PT 2 times a week and setting aside 2 hours each day to drive to the sessions and to participate.
2) Giving medicines to a crying Justin every day, 3 times a day.
3) Taking him to see specialists: cardiologist, hematologist, neurologist, electrophysiologist. And, awaiting anxiously for “news”. Seems like every other week, but more like once every month.
4) Calling in for a pacemaker check once a month and listening to the click, click, click over the dial tone to make sure his pacemaker is working.
5) Monitoring how blue his lips get when he cries or while he is asleep or awake.
6) Wondering why he sleeps so much when he does…is it his heart? Or, did he just have a really productive day.
7) Keeping up with insurance and medical bills.
But, normal is also:
1) Seeing him smile, that wide mouthed smile
2) Listening to him ah, ah, ahhh and eh, eh, ehhh.
3) Kissing his chubby, chubby, cheeks.
4) Being amazed every day by his progress: jumping more and more in his jumperoo, lifting up his right hand, making new sounds, reaching for toys, fighting with his brother for a toy.
5) Waking up to see him smiling and ah, ah, ahhing.
6) Going to sleep to see his peaceful face.
7) Hearing his chuckling cry when he sees a bottle of milk.
Picking him up and holding his warm body against mine.
9) Our daily walks outside with brother.
10) Having him in our lives, everyday for the past 10 months.
Then, I catch myself, thinking don’t get too comfortable–things can change on a dime.
All my heart mama friends, you were right. There is a normal that we do return to after giving birth to a child with heart defects. There is a normal after enduring those sleepless, nightmarish nights at the hospital. The normal, of course, is never quite ever really normal. But, hey, what’s normal anyway? Boring, I think. 
I find myself thinking about all our family and friends, too. Thanks for all your support. Without it, we would not have gotten through all the emotional turmoil.
June 12th, 2008 at 6:07 am
The Adjusted Normal definitely takes some time to adapt to. I’m in the midst of adapting right now. I guess what we have to realize is that we’ve put in some hard days but also that we are THAT much more appreciative of what we have and things we experience are THAT much sweeter.
You’re right, normal is boring! xoxoxo
June 12th, 2008 at 11:29 am
I was just looking at Sammy and realizing there are NO WORDS to express the deep, deep gratitude I feel for each moment I have with him. It sounds cliche, but there really is no way of truly explaining how deeply grateful I am.
“Then, I catch myself, thinking don’t get too comfortable–things can change on a dime.”
Why not let yourself get comfortable? Why lose this moment just because the next might not be as good? What if it is? Then you’ve lost this moment for nothing!
I know, I know, easier said than done - and always so much easier to say to someone else even when you’re doing it yourself!