I have to confess that I feel like a bit of a fraud for writing about hope.
For so many years before Jojo was prenatally diagnosed with heterotaxy syndrome, and (especially) for a good while after, I was consumed with worry and despair.
After we got that diagnosis, I tried to latch onto little glimmers of hope here and there, but it never really felt genuine.
Now, I'm realizing that may be because most of what I tended to hope for then was simply the opposite of something specific that I feared. It wasn't hope for the sake of having something to believe in.
And when some of those things that I was afraid of happening did happen, I started to give up what little hope I had entirely. It just felt pointless and discouraging.
Then, when Jojo was finally able to have the Glenn procedure last July, it felt like I was given a chance to start over mentally. I finally felt hope for him and his future -- real hope, not just wishes motivated by fears.
The picture above was taken shortly after his Glenn. We couldn't get over how pink his lips looked, how healthy and strong he seemed (even in the ICU), after months of cyanosis and weakness.
I should remind myself more of our post-Glenn bliss whenever I start to feel like I'm taking our current life for granted.
I still don't feel strong enough to hope for specific outcomes for him; I just can't bear the disappointment if they don't happen. I want so much for him, to see him accomplish so many things, but there are NO guarantees, and that's a really tough concept to internalize.
So for now, I'm going to let two main hopes guide me while we raise Jojo. It feels like I have at least some control over these particular dreams, which makes me think I might be able to hold onto them for the long haul:
I hope that he experiences a great deal of joy in his life, however long he may live, no matter the circumstances.
And I hope that he knows how much he is loved.
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This post was written in response to the Heterotaxy Connection's campaign to spread awareness. Please check out their Facebook page for more information!