taking heart in a broken world.
Sometimes I feel so tired of this. This year of major shock and bad news and terrible diagnosis, this year of deep pain and complete lack of control over my daughter’s health.
I had 3.5 short months of newborn bliss with her, and then it all crashed upon be with such weight.
Oh, it’s been a long year.
This year of fighting for breakthrough and urging my heart to keep believing even though things appear to be worsening; of looking at others who have completely healthy children or those that had children that died.
I’m tired of hearing that SMA is progressive and that the doctors expect her to worsen over time and with each cold; of being asked if we are afraid to have more children. I’m am so damn tired of fighting for hope. I want it to be easy. But it’s not, life is wrought with unease.
I am tired of trying to explain to people that we love Jesus and believe in miracles even if they don’t. And yes, SMA has no cure and kids die from it all the time, but no, I don’t put Florence in that category and I do not accept the course that “nature” has set before me.
And then I look around and see the hundreds of people that have started following our story in the last month. Nearly 900 people on Facebook alone, strangers and old friends and people that are drawn to Florence and our hearts, that are fighting for miracles too. It’s a village of people holding onto hope. And I need you.
No mother wants to give up. But I did and somedays I do: I feel so heavy and cracked wide open, my head splitting with pain. I am overwhelmed by what this world has to offer: sorrow and imperfections, tornadoes and babies dying in the NICU, cancer and SMA, stillborns and divorce, adultery and train wrecks, human trafficking and rape.
But, then I remind myself:
“I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world. [I have deprived it of power to harm you and have conquered it for you.]”
John 16:33 AMP
This scripture is so much more than words for me. These are the words of my King, the One I willingly serve and trust. In an instant, my God can turn my tears into stillness, and make peace reign. My heart will be wracked with sorrow and yet when I call on His name and throw myself at His feet, He comes. There is such love in His eyes. I feel it and know it. And He grieves with me.
He is my Redeemer, the One that makes the distraught mother into a pillar of strength.
And so, although I’m tired, it is still well with my soul.
Even though we will be leaving the hospital with a feeding tube and Bipap for nights and naps, even though she is “weaker” and does not “seem” to be getting better, I have a fire inside me, however dim it may appear, that simply won’t go out. I fear my buckets of tears have dampened it somedays, but then it rages and catches me off guard. This is not a fire that I have cooked up. It’s an impossible circumstance and I am only a first time mum: emotional, fearful, controlling. I want to protect my daughter from everything—and I can’t. I long for the days when my biggest worry was putting her bum in disposable diapers.
But those days are gone and my life has been changed. This fire in me and in you is the very flame of God, and may no man, woman, textbook diagnosis, doctor or circumstance dare to quench it.
Deep breath. Again.
Chin up buttercup, He has conquered the world.