I started this morning no less sleep deprived but feeling a lot more confident. I made a list of talking points and questions and went to rounds with the doctors fully caffeinated, in complete confidence. After stating a few things I’d like to see changed or adjusted and advocating for Rylie in letting them know how not okay it was to continue to flip her over and poke at her sore back multiple times a day, I felt like a boss, and had wished I had a mic to drop. 13 days in the hospital can do a lot of things, and the combination of sleep deprivation and trauma of seeing what your child has endured day in and day out is the perfect combination for a righteous special needs mom-advocate-anger to rise up inside. A semi-constrained ‘mom-hulk’ anger if you will.
But after repeating the ultrasound of Rylie’s blood clot today my mood shifted quickly after the results came back as unchanged even after so many had prayed for healing. I felt like I was balancing on top of a fence. The one side is the side that is hopeful and is straining to believe that Jesus is near, and that he cares, and even though I cannot see the whole picture, that he truly will work all for good. And the other side is the part of me I feel tempted to fall over to, that is full of doubt and questions.
The tipping point was the injection education where I was taught how to properly handle needles and how to effectively give Rylie an injection, every day, twice a day, for the next three months after we get home to treat the blood clot. After everything I have seen my daughter go through in the last month, the last two weeks, much less the last 15 years – I struggle to understand and accept how allowing her to go through more pain and have even more complex medical care than it has been already could possibly turn into something good. When you are with your child 24 hours a day for weeks in a hospital, there is a certain survival mode your mind switches to. Not only to battle sleep deprivation and lack of privacy, but to not be completely consumed with grief and heartache at the day in and day out of watching her get poked, stuck with needle after needle. She has had to have multiple foley catheters inserted and upwards of 20 blood draws from finger pricks. This is in addition to over 15 different IVs that have had to be placed at different times because of how difficult it is for her body to keep one working. She has had 2 CAT scans, an MRI and had to be sedated 3 different times. She’s had to get stitches in her back on two separate occasions without sedation, and had fluid drawn from her back with a large needle. I cannot even begin to estimate how many total labs and cultures she has had done in the last few weeks. The last 13 mornings she has had someone in her room waking her up at 6am to promptly flip her on her side and poke at all of the sore places on her back. Followed by another group of people an hour later every morning to do exactly the same thing. This is all really just the tip of the iceberg, and not taking into account the major spinal surgery she just endured a month ago. So when they told us a couple of days ago she now has a blood clot I decided I wouldn’t accept it. I felt strongly Jesus would heal it. In the depths of my soul I did not want this because it was both terrifying in itself, and overwhelming to think about the treatment of giving her injections twice a day for the next three months to treat it.
I believed I was supposed to pray for healing. We were supposed to pray for healing. And when they did the ultrasound today I wanted them to say it was miraculously gone. But it wasn’t. And so they sent me off to parent training to learn how to give my daughter a shot twice a day. How to hold her skin, and what places and angle to give the injection. And all I could think of is how she doesn’t deserve it. To have a needle pushed into her extremities twice a day every day for three months. And psychologically how do you become okay with inflicting pain to your child even if it is to help them? Even if it is a treatment that will keep them from more harm. Up until now basically all of Rylie’s complex care to keep her healthy and alive has involved things medically that are out of the norm, but are not necessarily painful for her. She takes multiple medications and uses a feeding tube to eat. She wears leg and feet braces and has multiple pieces of medical equipment to help her function better, but none of them cause pain. They just enable her to have a better quality of life. So I guess the thought of having to do something that inflicts pain on a daily basis makes me feel SO sad. It breaks my mother’s heart. How can you ever just become okay with doing something that knowingly causes your child harm?!?! Except if you knew that you had to cause the harm to bring healing…
I don’t know. I could be really angry and despairing, and in fact part of me wants to feel that way. But as I shared a week ago, Jesus is teaching me much about not falling into despair and choosing hope instead. And I see the effect Rylie’s life and our family’s story has on people. Jesus has used so much of it for good. Rylie’s joy for life alone is a testimony to the goodness of Christ. Today I’m truly fighting to choose hope, and to believe in God’s goodness.
I was reading just last night ‘The Gift of Being Yourself’ by David G. Benner. He talks about our life calling and how apart from God we cannot possibly understand who we were created uniquely to be. That knowing God goes hand in hand with knowing ourselves.
“Our call, like Jesus’ call, is to live out our life in truth and in dependence on the loving will of the Father. As was the case for Jesus, the discernment of this call must always involve wrestling with God, our self and the devil in the solitude of our private wilderness. And as for Jesus, this discernment must always occur in the light of our present life circumstances. This means that attentiveness to God’s call is a lifelong matter.” And he goes on to say, “Too often we think of God’s call (or our vocation) solely in terms of what we do. People speak of being called to the ministry or feeling called to work in healthcare or teaching. However, while doing will always be involved, vocation is much more than our occupation. It is the face of Christ we are called from eternity to show to the world. It is who we are called to be.”
I came back to our room after being trained how to inflict pain on my own child (a dramatic way to describe how to give her injections). And had to have a really good cry. It feels like too much. It feels unfair. And I feel like another small part of me is being crushed inside. I’m already grieving the months to come that I will have to cause her pain over and over again, even if it will be for her benefit in the end. And as usual when I sat down to write out all of my despairing, sad thoughts, Jesus brought new ones to mind and connected hopeful thoughts to my painful ones. I felt Him actively holding the broken pieces in His hands and rebuilding them into something more useful and more beautiful. I feel Him holding my hand and gently guiding me forward and its with everything I have that I have to look at Him and look forward instead of looking only at the heartbreak. This entire experience this past month has stretched my faith in a new way and highlighted Jesus in all the things in a new way for me. In the book ‘Suffer Strong’, they talk about glorious scars and ironically quote the verse that is on our Facebook Page for Rylie:
“God’s works aren’t displayed only in the fruition of a hoped-for outcome —healing of the weakness or pain—but rather that God’s works and His power are most evident in the weakness of itself: “My grace is sufficient for you, for my power is made perfect in weakness” (2 Corinthians 12:9).
If our weakness is not entirely apparent, then God’s strength will not be entirely apparent either. God’s works are powerfully evident in His healing of our hurts, but perhaps even more profoundly in the not-yet healing. That’s why how we suffer matters. Suffering strong offers a unique testimony to all who witness it, unveiling an ‘in the midst of’ God who is too big and too good not to be worshiped, whether or not our longed-for outcome materializes.” And in referencing Jesus and the resurrection they go on to say, “His resurrected body still bore those horrible scares, those terrible reminders of what had happened to Him at the end. Were the scars only there so His disciples would recognize Him? Is He the only one with scars in heaven? I guess we’ll see one day, but for now, that image reminds us that one of the final pictures Jesus left us of Himself included the scars that healed the world. Love is His end goal, but sacrifice and scars are the means to that end.”
Today I wanted to claim healing. A victory in healing. And give Jesus all the glory. I wanted to be able to tell all the people who stood with us faithfully in prayer that Jesus came through, and healed her blood clot! And it took me a bit to absorb that He hadn’t. In fact nothing about her condition had changed. Even though we all prayed with so much faith that it would. But maybe this wasn’t just about a physical healing answer to a prayer. “Quite beautifully, scars can also lead to deep communion between fellow sufferers.” (Suffer Strong) Maybe it was more about a LOT of people coming together in community and love, with the same heart and mind and desires. Maybe some of those people haven’t cried out to Jesus in a while. Maybe it was about a LOT of people following our journey and feeling our pain with us. Maybe it was about a LOT of people, many whom we have never even met, seeing Jesus in the smile of Rylie even as she continues to endure difficult days in the hospital and more discouraging diagnoses. And maybe it is more about further solidifying our journey in suffering and opening up more doors for community both with those who also have disabilities or children with disabilities, and/or in strengthening their voice as we advocate for the community as a whole. Maybe it is more about helping the world and society that tends to look away from such differences, to see the true beauty within them. Maybe Jesus is using our journey in ways we can’t even see or comprehend yet. John 9:3 says, “This happened so that the works of God might be displayed in him.” It isn’t the first time we have pleaded for healing. But whenever we have prayed for healing in the past, Jesus has brought always healing – just not always in the ways that we would expect…
“‘He can exact nothing from man that he has not exacted from himself.’ God didn’t just bring us up to Him; rather, he came down to us and in doing so opened Himself to all the struggles we face. He has experienced our limitations. He’s not just sympathetic towards everything we suffer, but He can empathize too.
Paul sums it up in one of my favorite passages ever: ‘We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus so that the life of Jesus may also be revealed in our body’ (2 Corinthians 4:8-10) Because Jesus was crushed, in despair, abandoned, and destroyed on the cross, we never will be. Because defeat wasn’t the end of His story, it won’t be the end of ours either. We can suffer strong because we know that He’s been where we are, and he will never leave us alone in our pain.” (‘Suffer Strong’)
We will continue to pray for healing, and I hope you all will too. We will continue to hope and I hope you all will too. And we will dig deep, and try to suffer strong because His grace really is sufficient and love really is the end goal!
“Trauma, and suffering in general, can force life’s trivialities, stresses, and distractions to fall away, inviting us to a clearer view of the things that matter most.”
(‘Suffer Strong’)
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