It has been a week since I have posted any kind of updates anywhere regarding Harper. I’ve started this post three different times, but haven’t been able to bring myself to share it because it involves deeply personal feelings and emotions and struggles, and somewhere along the way it began to feel shameful to admit I had those feelings and emotions and struggles.
But a precious friend gifted me a much-needed book to read for my birthday, and in the first chapter the author (Lysa Terkeurst) talks about how Christians feel they cannot talk about or process through their disappointments. Then she makes this statement: “If the enemy can isolate us, he can influence us.”
I spent the last week isolated, and maybe someone reading this is in the same boat. Friend, don’t let the enemy isolate you- don’t hide your feelings. Own them and speak Truth to them. The very God that created this entire universe created you and all of your feelings, and He is more than able to handle your emotions. Know that you aren’t alone!
As for me? Well, not heeding my own advice, I wallowed, I wept, I wondered, I whined… I was sad, I was mad, I was guilty, I was burdened, I was overwhelmed, I was devastated, I was confused, I was hurt. It was a week of wrestling and crying and processing, but eventually also reminding myself of Truth and making choices… choices for Harper, choices for our family, and choices for myself… choosing to believe, choosing to praise, choosing to trust, choosing to persist, choosing to seek Him, choosing to find the gifts.
So, the news came back last weekend that the ESES has definitely returned. Technically a child is not officially diagnosed with ESES until their SWI is 85% or higher, but when we were first introduced to this disorder Harper’s was in the 50-60% range and then progressed. However, she had beat it and was down to less that 25%, clearing her from the diagnosis.
She is now at 100%.
This basically means her brain is misfiring all the time, and her seizure activity is intensified tremendously when she’s asleep. She is currently losing skills by the day at a rapid pace, and it has been shocking to witness. Her learning has nosedived, her behavior and emotions are a battle, and she is falling more and more as her muscles are being impacted again.
I won’t lie- I was in a very low place when all the results came in. It felt as if the healing we had witnessed had been taken back in some way, that the miracle had been revoked- even though I know that my God does not break His promises. My feelings have been hurt and I did not and still do not understand. At any moment I can look at her and see what she’s losing and the impacts this is having on our family and be mad or sad or frustrated.
OR… I can choose to see the good. And God has reminded me that He is good. He has reminded me that He is faithful. He has shown me that He has never failed, that He has never lost a battle, that He hasn’t stopped keeping His promises. He has surrounded us with a village that supports and encourages us just as much now as they did seven years ago when this crazy journey first began. He has placed women in my life that speak Truth over me when I am struggling to see it, who allow me to be real but refuse to let me drown. He has given us the strongest army of prayer warriors, an army that continues to grow and that stands in the gaps and calls out on our behalf when we have no words. He has led us to the best doctors for Harper’s care, and even orchestrated two hospitals in two states working together to meet her needs. And He has filled our girl with His Spirit in ways I never could have imagined.
BUT even if… He has reminded me that even if all of those things were stripped away… even if nothing worked out the way I think it should… even if we face more disappointment… even if I found myself with absolutely nothing and no one at the end of the day… He would still be good. Because at the end of the day, at the end of this season, at the end of this journey, what matters is not what He can do or has done for me, but Who He is.
So we keep pushing forward, choosing to praise, choosing to worship, even if, simply because HE IS GOOD. Just as Shadrach, Meshach, and Abednego said to King Nebuchadnezzar in Daniel 3, we know our God is able to deliver us from it, but even if He does not, He is still good.