The last many months have been a continuous burden of challenges, and much like Whack-A-Mole, I’m smashing (or cramming back down inside me) the anxiety of decisions, the future and just merely tackling each day and the busyness it presents. I can’t help but feel a heavy weight yoked around my shoulders as the past several years of appointments, meetings, consultations, research and consideration we have sought are feeling like they’re coming to a head.
Elena’s body is changing. She’s growing. And old problems that we’ve been troubleshooting for years, need addressing. We have a wonderful team of doctors and therapists who have been advising us and we are grateful, but I can’t help but feel like I, as her primary caregiver, have felt the greatest burden and weight of choosing how to treat her little broken body with a (short) list of bad options. Last week we spent a couple days inpatient at Riley testing a device, that we believe may give her body some relief from her always tense muscles and the laundry list of problems that we fear as a result of it. Good option, hard decision.
What all of this has done, has forced me to begin looking ahead, down the road, into the future. As I have written many times, this is generally a no-no for me. Elena’s future, like everyone’s, is uncertain but unlike everyone else, there aren’t the usual list of boxes to check. Our boxes for her are ensuring she is well-cared for, including what that looks like, what we will need, logistics, how she will spend her time with Chad and me, how we will spend our time with her and so on. All of this is impossible to truly plan for and it creates mega fear within me. So I have learned mostly to live in the present, something that serves me well. But, these shifty past few months have me looking forward and trying to plan and trying to make hard, freaking hard, decisions for my daughter that I don’t feel equipped to make. It’s hard to hold her little hand and tell her she’s brave and strong and it will all be over soon, when I’m the one who has subjected her to these prods, these pokes, these painful procedures. I’m the one that has to look her in the eye while she is enduring, knowing that I chose this for her. The burden has been great and the road has made me weary.
Last week, while we were at Riley one particular line of my favorite Christmas song kept running on a loop in my head.
“The weary world rejoices….”
“The weary world rejoices….”
I felt like those words were me. And well, as I thought about it, everyone. The world. The weary world.
This song (I felt compelled to look it up, ha!) was written in 1843 as a poem. I kept thinking, if people were so weary in 1843, how insanely weary are we in the midst of this pandemic-world? This angry world. This hateful world. This world where love is contingent on politics, skin color, religion and ability. This world were injustice reigns. This world where a mother feels heartbroken about the decisions she has to make for her disabled daughter. This weary, ridiculously weary, world we are in.
But, that weary world, in fact, rejoices.
"A thrill of HOPE, the weary world rejoices For yonder breaks a new and glorious morn'"
Those 180 year old words are keeping my focus on the hope that is this season. This world is weary. You are weary. I am weary. But, this week, we rejoice because of hope. Because, tomorrow is a new day full of blessing and beauty and purpose. We rejoice because God sent us relief and comfort in the form of a baby who would grow, and know our trials, understand this weary world, and hold our hands as we walk through it.
I know God’s faithfulness firsthand, and in this burdensome season where I find myself, I will rejoice in knowledge of this, and the hope of what Christmas truly means.
Merry Christmas, friends.