FINALLY!! It was a VERY long and trying month. Rylie basically spent most of her time in bed because she never got to a place where she could fully tolerate sitting up completely in her wheelchair. She was a total trooper as usual though. I wish I could say I was as well, but I feel like I crawled to the end with an array of difficult emotions surfacing for all to see. It was definitely one of the hardest, most trying months of my life and I wasn’t even the one with casts. Between extreme sleep deprivation (because of required medication through the night and ongoing pain), the constant physical challenges of moving her with casts and all care-taking involved, and not being able to leave the house with Rylie, began to take an extreme toll on me mentally and emotionally. At times I would have breakdowns almost like a tantrum, and others just from sheer exhaustion of it all.
When you are the primary care taker for a family member with disabilities or extreme medical needs it is difficult to completely explain the intense emotions and levels of stress you manage on a regular basis. But when there is a crisis of sorts, or trauma out of the “ordinary” it feels like you are drowning in waves of stress, sleep deprivation, and even despair. Your emotions can go from completely suppressed when you have to be “on” to do the really hard things, and go to complete gut wrenching sobs the next, as you try to absorb and process the stress and grieve the ordeal that is, in addition to your already immensely challenging life circumstance. All the while, fighting to not feel shame because after all, this is a loved one- in my case, my child- that I love so deeply, and yet I spend much of my time fighting to not sink into a hopelessness when I’m more overwhelmed that usual. I don’t want to focus on how hard it is in general, especially during the really hard seasons, and I am not even the one directly experiencing the trauma- my kid is!! And yet I’m fighting to find grace for myself and a balance between allowing myself to grieve the life I thought we would have and embracing reality. Grieving the way I assumed my daughter would be, and finding joy in the sheer courage and unbridled joy she displays so freely. There is daily sacrifice and surrender for me, as I battle against the desire for things to just be easy, and comfortable, and instead finding the good even when at times it seems like it is buried beneath an ocean of emotional turmoil. I am constantly fighting to let go (no pun intended❄️….well maybe a little) of the way I wanted things, and being present in what it actually is.
Many times I cling to Romans 8:26 in a very literal way: “Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.”
Because at times, I don’t have words, just gut wrenching sobs….
But I choose to believe verse 28 literally, because if my hope is truly in Jesus, I have to hold to the promise that:
“….we know that for those who love God all things work together for good, for those who are called according to his purpose.”
There are definitely days where I have a harder time looking for the good than others. On the really hard days, I think how can there possibly be ANYTHING good in this?!?! When nothing else seems to be possibly good, and I cannot possibly imagine what purpose there is in a season, Rylie never fails to be that physical reminder in the way she pulls joy from the depth of her soul no matter what. And in the way she goes from day today, seemingly unphased by the trials or difficulties of the previous day. I haven’t ever caught Rylie reading in Lamentations, but somehow it’s like she already knows what it says:
“The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The LORD is my portion,” says my soul, “therefore I will hope in him.” Lamentations 3:22-24
The Lord is my portion, says my soul. I have to choose to believe and say this to myself, until my soul automatically speaks it back to me. Until it is anchored in my soul. How interesting these words are actually in the book of Lamentations…. Lament is defined as: “a cry of sorrow and grief”, and yet it is in this full book of laments in Lamentations where the author still proclaims God’s faithfulness and His steadfast love…….
The study Bible I use states in the description of the theme of Lamentations:
“In a way, the lamentation process is one of coming to grips with all that God wants us to see about our present circumstances.” YES. THIS.
The look on Rylie’s face after getting in the car after getting her casts off makes it worth it all. If studying the book of Lamentations sounds too intense to you, just come spend a few hours with Rylie. She will school you on all things from lamenting to songs of unbridled joy. And while she won’t quote the direct scriptures, she will remind you of just how simple it all should really be…….
“I think that when we get to Heaven
We’re gonna laugh when we can see
How hard we try to make it
And how easy it should be”
–Praise the Lord
By Crowder
Comments