So yeah, this isn’t the year of the Norman Rockwell Christmas for us. In fact, every attempt I’ve made at celebrating the Advent season has been derailed in some fashion. I’ve yet to be able to sit through the entirety of any service or function that is Christmas related. That’s been tough on my soul, as all I want is for life to slow down enough for us as a family to be able to enjoy some (dare I say, “leisure”) time together and to celebrate all that the birth of Christ has meant for our family, especially this year.

But just like with all those prenatal prayers when I asked God to heal Pearl, he is up to something different than what my heart desires. And just like that season of brokenhearted prayers when he said “no” over and over again, I can’t see what could possibly be better than what I am asking. Alas, my head trusts what my heart doesn’t. That tends to be the case most days right now.

It will be Christmas Eve by the time I am finished writing and posting this, and we are at Vanderbilt Children’s Hospital again. Pearl has pneumonia and that is not something to be taken lightly for a child with HPE.  In fact, it can often be fatal. She was admitted on Saturday, so the doctors can be extremely proactive on the front end to battle this. She’s had a rough week and the last 2 days especially have been rough. Tonight, she is resting well. They have adjusted her medication and she’s getting heavy doses of a lot of drugs to try and battle seizures that are brought on by pneumonia. The hope is to once again balance the medication in such a way that her seizures are suppressed, but to not medicate her to the point of affecting her breathing. It’s a fairly calculated balance that sometimes takes a few days to dial in. We need to get rid of the fluid build up in her lungs, and that is a fairly urgent goal.

The older kids are doing well. Since we’ve only been here for 2 days now, the weight of the family being divided hasn’t yet started to take its toll. I imagine a bit of the weight will set in on Christmas morning when some of us wake up at home, and some of us wake up at Vanderbilt. I’m not sure what that’s going to look like yet. It’s not as though the Christmas morning gift giving is a huge part of our family celebration but it’s a huge part to the kids, so I’m sure we’ll figure something out.

I’d be lying if I said I wasn’t missing the sentimentality that is usually associated with this time of year, and that is tough. I know it’s all silly stuff, some of which is completely meaningless, but it’s silly stuff than often reflects deeper feelings. I wish I could clearly articulate to you why God is not allowing the sentimental warmth this year, and why he has instead, chosen this for us. I can still see gratitude way off in the distance. I can even see clearly with my eyes all that we have to be grateful for. Even as I type this, I’m sitting in a room at Vanderbilt… Vanderbilt…A prestigious medical community that is right in my back yard! My family isn’t split by hours of travel between our home and here. My daughter is here with me, about 5 feet away. I never dreamt that I would be with her on Christmas Eve. It’s incredible, though my heart is still pounding with frustration, worry, and entitlement.

So this Christmas is hard. This year is hard. Everything’s hard. But God continues to mold our hearts to be more like his. He continues to say “no” to what we ask, and instead offers us something richer and better than we could ever fathom. He continues to keep us at bay from our own desires and he uses his rod and his staff to shepherd us along the path. He continues to watch over all 3 of our children, caring for them and transforming their character to be more like his.  He continues to provide for us, and continues to weed through all that needs to change in our hearts. He continues to give us difficulty, and then he equips us for it, and often times, on the backend, shows us what he was up to the whole time. I’ll take it. I’ll take this life. I’ll take a split family Christmas over sentimentality, if that’s what he’s doing. Though my heart can’t see it, my mind can clearly see that whatever he is doing is better than what I would have chosen for myself.

So Merry Christmas from The Brown Family! Thank you for participating in this life with us. Thank you for not merely observing. Thanks for taking the time to read, and please pray for a quick recovery for Pearl. She needs to clear out this fluid before it get’s worse.

-Eric

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