“I believe you. You don’t have to prove that he’s too sick to come.”
My sister filled in the gap between what she now understood and what she still did not know, as I took a deep breath in the middle of detailing the symptoms our son with spina bifida had developed over the past five weeks, leading us to cancel our travel plans. We wouldn’t be with extended family for Christmas.
My sister’s life-giving words pierced through my suffocating cloud of heaviness; like a beam of sunshine they lifted my self-imposed guilt of bringing disappointment to everyone’s plans. I exhaled with exhausted gratitude as she acknowledged the pressure I was carrying into this dreaded conversation.
Because she listened, validated and believed, I no longer needed to sufficiently explain what long-distance family members hadn’t seen with their own eyes. She had heard enough to believe me and to share our sadness at this unfortunate but necessary decision.
My husband and I decided to stay home with our son, while our older kids are still making the cross-country drive. It won’t be a “normal” Christmas for us this year, with big family celebrations and traditions. But we can still choose to look for the silver lining.
Our immediate family’s life has closed in and centered around a new normal these past five weeks: leaving messages for doctors, scheduling, canceling, caregiving, praying and watching our son’s health decline. We have been sliding with him down a dark tunnel, with de-tethering surgery blinking hope in the future but with no guarantee of improvement, and the possibility of added complications as well.
We pulled him out of school for the past two weeks because it had become too much for him, which has meant trying to do what we can for him at home and meetings with his (thankfully supportive) teachers to decide what the best scenario for him might be in the new year.
What the new year holds. Plain and simple. We. just. don’t. know.
It’s all one big question mark whether these recent regressions will be permanent and stable, will continue to get worse, or will be a brief window of setbacks he will somehow bounce back from.
It doesn’t even need to be said, but it’s been hard.
And in this season of being more needy than normal, we are incredibly grateful for the support of our family and friends. One of the greatest gifts we’ve received this Christmas is the one that says to us:
“You are heard. We believe you when you say you are not able to come. You do not have to prove to anyone the level of sickness. And we don’t want you to feel like you are letting us down.
We are standing with you, cheering for you in these trials, and holding you in our hearts. You are the gift, whether you’re here in body or with us in spirit.”