Unseen
“I’m not sure how to ask this question.” My mentor shared. She was full of compassion and grace and fully committed to pushing me towards God.
“It’s ok. You are free to ask anyway.” I encouraged, knowing her questions were always helpful and always from a place of wanting to help me grow.
“If it is God’s plan for Finley to have CP, would you want to change the plan?” She paused, gathering her thoughts. “I know, left to ourselves, we always want to change the plan, but when you think about it, what do you want?”
“That is a good question…” It was my turn to pause.
I had prayed a million times for God to heal Finley of her Cerebral Palsy, or for Him to help her sit on her own or talk on her own…something….anything to help her feel less trapped inside of her body, anything to allow her giant personality and love of all things fun and friendship and family to be expressed in greater fullness.
In moments of exhausted venting I would say, “I know we have been blessed so much through Finley’s disability out of the generosity of others. She is the reason we have the home we have, the car we drive, the handicap parking space outside of our home (Chicago street parking is a hot commodity) but I would give it all up in a second, live in a one bedroom apartment with our four kids, if it meant that Finley could be healed.”
I would say, “WHY OUR DAUGHTER?!” “Why us?”
I would say, “Can’t just one thing about Finley’s life be easy? For her? For me? For us?”
I would say, “I can’t go on like this. Something has to change.”
I would say, “What have we done to cause this!?”
I would say, “Can’t God just heal her a little bit, just give her the ability to feed herself? Or sleep? Or drink through a straw instead of using a bottle all of her life!?”
I would say all the things that bombard the human brain when we are under immense pressure for years and years at a time.
Just as a side note, this type of raw honesty has not come naturally for me. I was the kid who never knew what they were feeling unless I was happy or excited. Any type of “negative” emotion I would stuff away, believing it was somehow bad and wrong. I unknowingly forbid myself to feel sadness, anger, anxiety, jealousy etc. I would hide those emotions away until an event would cause it to be too much and I would erupt, or my chin would break out into cold sores from the unprocessed stress (that was great as a middle schooler!) No one can hide their emotions for too long. We can get very good at faking it, but it comes out somehow, someway…even if it looks like cold sores.
It wasn’t until I was in my early twenties that I began to see that God gave us emotions and He himself experiences them as well. It became clear that the emotions were not wrong, we could do wrong in those emotions, but the emotions themselves were how God wired us, making us in His likeness, AND He is strong enough for all our emotions.
Needless to say these venting sessions could get quite raw and real. Yet, despite the venting, and even more than healing, I did want what God wanted for me, for us. Throughout my life…as early as I can remember… I would pray a song I had learned, “make me a servant, humble and meek. Lord let me lift up those who are weak…may the prayer of my heart always be-make me a servant, make me a servant today.” I knew I wanted to live for something greater than myself, I wanted to live a life fully devoted to God…I had no idea how hard living this out would be. No one tells you how hard that will be as you grow older, as you face difficulties, discouragement, depression, heartache, heartbreak, sickness, suffering, setbacks, anxiety, anger…no one told me just how hard it would be and even if they did I would have never grasped the reality of it all until walking through it myself.
When I was a teenager, I felt called to help orphans in another country, probably a third world country. I decided one night, in preparation, to try sleeping in the bathtub, without water. I grabbed my blanket and slept all night surrounded by cold porcelain. I figured that if I could sleep in a hard bathtub, I could sleep anywhere. Sleeping in a bathtub did not prepare me for the years of sleepless nights one can have with a special needs child. Maybe rather than me seeing my future correctly or accurately, sleeping in the bathtub, believing I would be working with orphans in third world countries was what began to prepare me to have a special needs child. Not that anything prepares you for becoming a caregiver. It could be easy to feel like I have missed something, missed my calling…
But, what if it is less about the specific thing I am doing and more about how I am doing it, how I am showing up, how I am learning and growing and believing and trusting and putting one foot in front of the other, even when it looks messy, even when it is far from perfect…
Maybe it is about commitment, about standing firm when circumstances will try and take me down…
Maybe it is about learning to be content despite my circumstances and seeing the beauty in the brokenness…
Maybe it is about seeing the disabled community, a community so vast, so unseen, with some of the strongest people you will ever meet…
Maybe it is about learning to make a difference to someone, even when no one will ever see or know or understand what it is, or how hard it is, or how many tears have been shed, or how many prayers have been prayed, or how many sleepless nights have been accrued…
Maybe it is more about continuing to show up, continuing to trust God, even if I had written this story, this is not the plot twist I would have chosen…
Maybe it is about laying down my pride and lifting up someone else whose life depends on it…
Maybe it is about becoming like a diamond that is created out of immense pressure and then is refined by fire and then is cut by another diamond into a beautiful, unbreakable, unscratchable gem…
Maybe it is about finding the treasure that can only be found in the darkest of places…(Isaiah 45:3)
Maybe it is not about today’s victories, but about the character and refining that is happening during the process of the pressure…
Maybe it is learning to be honest with ourselves and others more than we ever would have otherwise…
Maybe it is about learning how there is strength in vulnerability and openness…
Maybe it is about embracing what is right in front of us fully, whole heartedly and laying down the approval of others, or what we thought life would look like and seeing the gift and beauty of today and each person that is in our life today.
Maybe it is about embracing the life that God has given us, with all of its brokenness, believing that it is through the cracks and crevices of our brokenness that the love and strength and grace of God shines through.
Our society honors those who are most visible-our social media followers, our likes, our subscribers. God honors the unseen, the hidden. Just because our following on social media is not huge, or our activity is nonexistent or inconsistent, does not mean we are not doing something great.
Finley cannot talk, walk, sit, eat, brush her teeth, run, or jump. People will look the other way when they see me pushing her in her wheelchair, some will stare. Some are kind and smile at her. But most are uncomfortable, not knowing what to say or do. I was the same way before I had a child with special needs. In the world’s standards, she is unseen. By God’s standards, Finley is a queen.
Finley does need my help, she really cannot do anything without the help of someone else. Yet God has used her to teach me so much. How to enjoy the simple things. The importance of daily cuddles. That laughter truly is the best medicine. She has taught me how to persevere in a way I did not know before. She has taught me how to advocate and fight well. She has taught me the importance of boundaries. She has taught me the importance of rest. She has taught me when it is time to get back to work. She has taught me that I am stronger than I know and also cannot do this without community. She has taught me how much I need God and how much I need to cling to Him for strength and grace each day.
As I thought about my mentor’s question, I realized I had been given the answer long ago, as a child praying that beautiful, simple song of servanthood.
“As hard as it is, I do want what God wants for us, more than anything else…” I hesitated, “That does not make it easy,” laughter escaped my mouth as I said those words. It was the opposite of easy. “Or something that I don’t struggle with, but I know it is good, and that He is, and will use it for good.”
“Yeah…and keeping that in mind can be such a challenge…especially on the extra challenging days…but God is with you in it. I know it is hard. Let’s keep talking about this.”
“That sounds good.” I responded, so grateful for her wise words and comforting companionship.
(PS: Finley HAS learned how to drink from a straw! That came about at age 5 (she is currently 7) Up until that point she drank from a bottle. We are beyond thankful to God for her straw skills! And also around age 6 her sleep improved greatly! Sleep is still tricky, but much much better!)
Magalie Salas
Hi Heather- Thank you for writing and sharing this post. Your strength and Finley’s courage are an inspiration to me. May God continue to bless you both, may you both always feel Him close to you, helping you in this difficult, mysterious, and sanctifying journey. May God bless your whole family.
heathersweetman
Thank you so much, Magalie. So grateful for your kind words. I hope you and yours are well. May you know the grace and peace of God today.