Simeon is smiling more and can even giggle. A wonderful developmental milestone! He is also gaining weight (now over 10 lbs!), which means we’re going in the right direction. And the doctors are trialing a slight notch down in his respiratory support (albeit, still on bubble CPAP). It’s an art more than an exact science with the fluctuating support he needs over time. It’s a game of wait and see. Time. More time. And more time. No one is giving me an answer, but it seems that we're looking at close to at least another couple months.

 

Simeon’s first heart surgery is also working very well to restrict the blood inappropriately shunted from his heart to his lungs. We’re getting closer to his big open heart repair, but time will tell us if that needs to be done this summer or fall. The longer they can wait, the higher the probability for successful outcomes. 

 

We’ve also found a primary nurse for Simeon! Whenever she works her 3 shifts in a week, she is always assigned to Simeon. This means that Simeon has someone who looks out for him and provides much-needed consistency.

 

Regarding Calvin at home, he continues to flourish and delight his older brother and sister. 

 

 

 

Last week (Mother’s Day) marked six months of our tenancy at Texas Children’s Hospital. We might be on the verge of squatting at this point, or maybe we’ll be required to register property taxes at Texas Medical Center. 

 

Would you ever think that you’d be in the hospital for 6 months? 

 

Honestly, I never imagined it for myself. When James (now 2) was in the hospital as a baby for his own lung issues, I remember hearing stories of some babies living in the hospital for months from birth and saying, “Oh my! You mean, they’ve never been outside at all? They’ve never felt the sun on their faces or felt the breeze whip their cheeks?” Now that’s the case for our little Simeon. And because of that, as Bilbo says, our family feels thin, stretched like butter scraped over too much bread.

 

 

And yet … we carry on in hope. We move forward in hope not because the doctors tell us that Simeon has a fighting chance of eventually having a good life. We are not hopeful because we can be optimistic after a grueling months-long (and in many ways, years-long) medical marathon. All of life is fragile, as the past six months have taught us. You and I – none of us are guaranteed a tomorrow like a today, and this is true for every person. 

 

My recent doctoral work at Cambridge was all on the nature of Christian hope, and boy, I’ve gotten a field unit in the actual experience of it. Book knowledge of a theology of hope is a chasm apart from how Christian hope touches and textures our lived experience. 

 

To define what hope is, as we all know, is different than an experience of it. And often our experiences of what we name as “hope” are not genuine experiences of hope, at least, not in the Christian sense. If we are to get through the piercing heartaches and severest bodily ailments that life inevitably brings, then we need to have a substantive hope. What is this substantive hope? In a subsequent post, I want to reflect together on the contents of hope and how this comes to have real purchase in our lived experiences. As we will see, we need nothing short of the hope of glory, to use Pauline language, and we must locate ourselves, including our sufferings, in a story so grand that we are caught up in the cosmic drama of reconciliation and restoration.