Travis and I were laughing today as he said “you are turning into me” in reference to his tendency to be upset but not know why. Last night that’s exactly where I was. I’m usually very on track with my thoughts and emotions, able to precisely vocalize exactly what I am feeling and why. Not last night. I started blaming Travis for a bunch of very minor, menial things that made absolutely no sense and had nothing to do with anything. Then as we laid in the darkness of the safe haven of our room, my tears streamed fresh and warm down my cheeks, soaking my pillow and Travis’s loving arm. I’ve been so good at keeping my nurse hat on, dealing very matter of factly with the choice we made to put Ryan on palliative care. I so quickly and easily convince myself that I am strong, am confident in my decisions and know exactly what and why I am making a choice. Yet at the same time, my ever-increasing ability to hide my feelings, fears and fragility collides harshly with the stoic demeanor I so easily and quickly grasp. I tend to call it self-preservation but deep in my soul I know its real name is fear. And that fear can so easily and quickly overcome my heart and mind. Last night I needed to grieve. And today my heart is still grieving. And tomorrow and for days to come I will continue to grieve because I have come to the end of my strength, the facade of strength that I easily throw on. Deep down I am not strong. I am human. And in that humanness I am tender, fragile and very simply stated, a mom who loves my children with an unexplainable emotion that I will never be able to express with words. And that love for my Ryan has a twist, a layer, a chord that is even stronger and deeper than my heart and mind can wrap around.
When I signed up for this parent thing I never imagined one day I would sit here saying the end of our fight has come. I didn’t think I would tell a medical professional to stop trying to fix my child. I didn’t comprehend the loss of life saving, medical advancing options. Yet here we are. We’ve made the decision out of love for our child. Out of hope for his eternal perfection. Out of peace for everyone in our home. Out of the opportunity to continue to love and spoil and dote on our perfectly broken boy. But man is it hard. My heart aches for normalcy and freedom from medication, therapy, special education, braces, medical devices and tubes and labels. Yet in the same breath I can say I would never change a single thing about my Ryan because he has captured this world exactly as God intended him to do. His mark is felt by so many. His legacy will be full of redemption and overflowing disbelief for how strongly he has faced every day. His body will fail him but his soul will live on. It’s that eternal perspective that gets me through every day, every hardship, every worry, every tear and every difficult decision. It’s the very core of my being, the very core of my husband and my children’s beings. It’s what drives us to love and cherish every single day. So on these days when I feel so overcome with emotion, when my heart feels broken, shattered and frail, I remember verses like Psalm 91:4 that says:
He will cover us with his feathers and under his wings will we take refuge; his faithfulness will be our shield and rampart.
It’s such a beautiful picture, and I focus on it so very much. Every day I remind myself that this world is temporary and only a the blink of an eye in comparison to our time in eternity with our Heavenly Father. I can’t wait to get there. I can’t wait to see my sweet boy running and jumping and laughing and free. I can’t wait to hear him say “I love you, mommy” and be able to count to a hundred. To hear him spell words like apple and cushion and freedom. I can’t wait to see him free from scars and seizures and feeding tubes and braces and weakness. And I really can’t wait to watch him play football with his siblings and daddy. God’s plan is so perfect and while I have the wonderful hope of a glorious eternity with those I love, my heart still feels the searing pain and sadness of today. I have no idea what any of our tomorrows will look like. I never imagined any of the tomorrows of my past would look like they have. But no matter what each day held in those days, no matter what each day holds in the tomorrows to come, my heart overflows with thankfulness that my job is not to worry about those days but instead to hold fast to the truth that centers and steadies the very core of my being. And that is simply this – God is good all the time. Through heartache and blessing and pain and laughter and success and failure and disappointment and beauty. He is good. He is faithful. He is loving. He is truth. So with those thoughts parallel to the hurt that fills my heart and mind, I am able to boldly and cheerfully proclaim I Thessalonians 5:16-18:
I will be joyful always, I will pray continually, I will give thanks in ALL circumstances because this is God’s will for me in Christ Jesus.