Two years ago, we were in the hospital as Evie struggled with an intussusception (where the bowel telescopes inside itself and gets stuck). It was a hellish time full of fear and frustration and trauma that led to months of progressively worse issues.
And I’m grateful for it.
Not in the happy way, but in the “it all worked out in the end even though it was horrible” way.
Because the bowel defect was already there causing problems. It limited the amount of food she could take in, it kept her malnourished by not letting her body absorb nutrients properly, and it messed with her heart rhythm. Eventually those problems would have required more extreme intervention. And all of our solutions would have been worthless. No one ever suspected a bowel defect was the real source of all of those problems.
But then it turned catastrophic. It demanded it be found. It demanded it be fixed.
And fortunately, we found it and we fixed it.
But we wouldn’t have if it hadn’t tried to take her life. We would have continued on, managing issues that were becoming increasingly unmanageable. We would have watched Evie stay small and prayed that the heart issues wouldn’t worsen.
But that didn’t happen. Not because it got better, but because it got significantly worse.
Same with her breathing. If she would have kept crawling along with getting each breath, we likely wouldn’t have trached. We would have thought she was doing so well and managed in other ways. But we didn’t. Her breathing issues turned catastrophic and a trach became an absolute necessity.
So we got to see just how great she really could do. How beautiful her eyes are when they’re not filled with fear that the next breath won’t come.
And catastrophic is what landed us at Cincinnati Children’s Hospital. If the scarring in her airway had only been slight, hadn’t required the best doctors in the world, we never would have traveled 10 hours away for her care. But she did and we went and it made all the difference in the world for her.
But we’ve always come out on the other side of each catastrophe. We’ve been able to do what needed to be done IN TIME. And that’s my continued prayer. That each catastrophe will give us enough time. Evie’s bowel defect gave us nearly 10 months of going from bad to worse. It threatened her life slowly enough for us to test and test and test and finally do surgery to find and fix it.
We’re still recovering, though. Even though we made it through and even though Evie is doing amazingly well, those two things don’t negate the horrors we witnessed or the 10 months of feeling helpless to save our child. That level of stress for so long is simply not something you can just bounce back from. Having her still here doesn’t erase the late night conversations discussing the perceived inevitability of losing our little girl. It doesn’t erase having to spend 10 months shutting down our emotions and distancing ourselves from our own child because we knew if we broke down, we couldn’t do what needed to be done to save her. It doesn’t erase the fact that we bought a puppy in the middle of it because we wanted our older daughter to have that comfort if she lost her sister. It doesn’t take away the flashbacks or the panic attacks or the deep realization that we could have lost her so easily. That we still could lose her. That we’ll never be safe.
We’re grateful for those catastrophes, we are, but it’ll take some time for us to process it all, to breathe again. We were all deeply wounded and only now are we started to peel back the hastily placed bandages to assess the damage and figure out how to heal. We’ll get there.
And that all sounds so doom and gloom and we’re NOT feeling that way. We’re thoroughly enjoying this new phase of getting out together as a family and doing so many normal things. I think that will go a long way towards healing and potentially preparing for the next catastrophe.
Hopefully it’s a slow brewing one again.