Here’s how our family manages hospitalizations: I live with Carson through the week in his hospital room while Jeff works full time, getting the other two kids where they need to go and taking care of things at home. On the weekends, we see each other for an hour when he comes to stay for two nights so that I can drag myself the hour-long trip home to see my kids and get some desperately needed sleep. Then on Sundays I drive back to the hospital and we say hello to each other and he comes home for the week while I stay. (If you are unfamiliar with our son’s battle, you can read about it here.)
We have done this through 18 hospitalizations, and some of our hospital stays have been months long. All totaled up, I think we’ve lived here for over a year. It’s not just us. The hospital is full of parents doing this every week — exhausted dads and moms trying to hold everything together.
A couple of weeks ago, during one of our switch-offs, we decided to walk across the street to get some quick dinner while Carson was sleeping. From our booth at the sandwich shop across the street, we could look up and see Carson’s hospital room on the 5th floor. We knew it was his room because of the way we had left the blinds configured.
(For a visual, this is the view from our hospital room looking down at the eateries.)
We sat down and Jeff said, “How about you pray over our food.” (I am not usually good at remembering to pray over food, but Jeff is consistently good at it.)
Me: No.
Jeff: No?
Jeff: (pause) Well then ok, let’s just have a moment of silence.
Neither of us could do it. Maybe that sounds silly, but we just didn’t have the capacity at that moment to simply pray out loud over our turkey sandwiches.
Understand that we had each been praying independently throughout the day unceasingly by ourselves with God. But at this moment, we didn’t have anything else to offer. Sure, we could have prayed out of rote memory some kind of disconnected prayer, made an effort to meet some kind of made-up requirement like we might have years ago, but that’s not how we roll now.
Now we have a greater depth of understanding His strength in our weakness. (2 Corinthians 12:9)
This happens other times when we both feel that we are at the breaking point. One of us will look at the other and will say, “You okay?” I might answer, “Uh, I think so. You?”
What we are really saying to each other is NOTHING ABOUT OUR DAILY LIVES IS OKAY AND HASN’T BEEN FOR YEARS AND I CAN’T STAND THIS ONE MORE DAY FOR OUR FAMILY BUT IT DOESN’T HELP TO THROW A SOBBING FIT EVERY HOUR AND THIS DOESN’T MAKE SPIRITUAL SENSE BECAUSE WE LOVE JESUS AND THIS IS NOT LIFE ABUNDANT BUT I AM SHAKINGLY HOLDING MYSELF TOGETHER TODAY AT THIS MOMENT. YOU?
Here’s my personal confession. God speaks to me about a lot of things, but usually not about Carson. This life-altering, major, extremely painful part of my life… and He is largely silent. Yet, He is speaking, and I know He’s here. I know His silence is building my faith. It’s for a reason I can’t see right now.
I’ve been writing these blog posts for a month now, but I don’t always FEEL them when I hit the “Publish” button through gritted teeth.
So I told him that last week, “Lord, I know you want me to put this out there, but I am not feeling it.”
He said, “That’s the point. You are teaching others how to fight in weakness, to trust Me instead of the lies that assault the mind.”
We sometimes think the strongest people in faith are the ones with the bold voices, the ones that seem unfazed no matter what comes against them. The ones who don’t cry easily or show any faltering. And I am not saying they don’t have faith — we certainly all have different personalities and expressions in our relationships with God.
But I propose that sometimes strong faith actually looks like desperate weakness from the outside. When you have no more tears left to cry or words to pray, and all you can do is cry out on the floor and whisper….Jesus. And you feel inadequate, but you are still crying out. Still coming to Him. Faith is not built in the light, but in these dark hidden moments. It’s when you make the radical choice to come to Him again, even if nothing has changed from the previous hundreds of times you came to Him.
And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. (Romans 8:26)
God understands not having words, He doesn’t need words. He evaluates differently than we do. He sees our hearts and the massive fortitude it takes sometimes for us to simply keep coming to Him… in our weakness.
That is real faith, indeed.
He knows how weak we are; He remembers we are only dust. (Psalms 103:14)
19 Comments
Love reading your blog and I’m praying for your family. We were at PCC at the same time and have a mutual friend Tammy Martin.
Thank you so much. Any friend of Tammy’s is a friend of mine!
Always always you guys are in our hearts and prayers. Talked about daily with our Peter and Cindy .. You are a part of us ….. thank you for speaking and sharing your innermost thoughts… love and hugs
I certainly can relate to the crying out to the Lord with nothing left in you and not see any answers or results but can testify as you do that is our only hope and know in my heart that if not in this life on earth but when He calls me home, He will show me the answer. I do often wonder how people without the Lord face difficult situations. My prayers are with Carson & your family continually Bryn!❤️
Manetta, we’ve been praying for you. Much love to you and Joe.
For so many reasons, your contributions to those close to you are immense. Today it’s about perspective for me. Your strength, faith and perseverance continue to help me plant my feet firmly on the ground and praise Jesus.
This blessed me. Praying for all of you. Thank you for being strong/weak enough to let God do it.
Thank you. Don’t give up writing. This is so significant for me right now.
Thanking God for your obedience to Him. Thank you for sharing what He is doing and not focusing on what He is not doing. This encourages me that when I am at my weakest moment that it is ok.. Our God is strong when I am week! Love to you all!
Beautiful!
Thank you for writing. My health has been going down for a few years now and I’m having a tough time with it. Doing anything right and nothing working. Thanks again for your writing, it puts everything in perspective.
I’m at awe, holding back tears, because I’m at work. I needed this today! My Ethan struggles with ADHD and a mood disorder. Everything makes him angry and it’s a daily struggle. But I keep going to God. Sometimes I don’t know what to say so I just cry. And then I pick myself up and thank Him for my blessing, called Ethan. I love your blog and you ARE reaching so many. Continue to let God use you! ????
I love your posts Brynn although I find little left to share after my thoughts and memories refresh the grief that you face daily. I remember and am grateful those challenges are no longer in my daily path. I remember going to hear a speaker I heard in Alabama shortly after Samantha’s birth describe how a so challenged parent lives with daily grief of loosing so much, the health of your child, the expected norm of daily life, and even more the dream you had for your child and your own life. It is like death in so many ways however you don’t get passed it and it can hit with each new challenge or event. Faith, definitely the unseen hope for our future. Continued Blesssings on you and your families walk.
Christy, what you have said here is all so true. You walked this for so many years. Thank you for your words.
Hi Bryn, you don’t know me, but somehow the magic of facebook led me to your blog and your words truly hit home and resonate with me as I have battled chronic illness for years, with a loving warrior mother constantly by my side during long hospital stays and the uncertainty that comes along with this crazy alternative ‘abnormal’ normal our families are both living. I spent 3 years fed via feeding tube and was TPN dependent for months at a time, and I know your frustration and desperation and truly understand Carson’s pain. Our God is perfect at miracles and I’m now praying for Carsons.
I am sure you’ve heard it all, and that Carson has had the million dollar work-up… But has been evaluated for MALS- (median arcuate ligament syndrome)? A friend was diagnosed after years of horrific GI problems and IV nutrition and had had great results undergoing surgery for it recently with a Dr. Hsu in CT.
Keep standing strong and fighting and being a wonderful advocate for your son. God bless you!
Jessica, I’m sorry that you know this hard road so intimately too. Serious chronic illness steals so much,but we still have hope. I will look into MALS, pretty sure that’s not our issue here but I know someone else it may help. Blessings to you and your mom!
The cries of a mother’s heart is always heard by God. ( This is an old Persian proverb) it has been true for my grandmother, my mother and myself…You don’t need words, God knows the depths of our pain, through our tears, through our groans, and through our silence. I stand with you today my sister Bryn and I am pleading His healing fire over Carson in Jesus name. Love you dearly..xoxo
Bryn, your profoundness in all of your posts sears my heart. Thank you for taking me into your world. Our nightly prayers have been and remain a constant agreement with you all for Carson’s healing to manifest. His health has been paid for so we do not doubt nor waver. As we stand in agreement for Carson we also agree for you and Jeff and family for health, strength, comfort, peace, and provision for all things you need and desire. My love to you.
Praying for you all. God is walking each step with you holding your hand. Isaiah 41:13. For I the lord thy God will hold thy right hand saying unto thee: Fear not. I will help thee.