Since July 2014, this beauty has struggled with sleep. Slowly over time, her nights have gotten worse. Scary. We’ve tried strict bed time routines, melatonin, co-sleeping, weighted blankets, so on and so on. Nothing was helping. We were helpless. We were sleep deprived. She was a zombie, and we were going through the motions. We finally decided on doing another sleep study. I was convinced
she was having night time seizures. Her little body would thrash in her bed causing black eyes and scratches on her face. Even holding her through it, her body convulsed. She screamed and moaned throughout every. single. night. Hearing these sounds come from her non verbal, barely laughing anymore self, was heart breaking. The sleep study came and went. The results included sleep apnea, periodic limb movement syndrome, night terror syndrome, and possible frontal lobe epilepsy. 3 new medications introduced and life has changed dramatically. She’s sleeping. Barely crying out. This change happened literally, overnight.
Those sleepless nights became a battle ground for me.
Fighting with myself to keep perspective.The dark has teeth, anyway. But then combine no sleep, fear for what was happening to my love, horrible thoughts that no parent should have, anger for not getting sleep, frustration, etc. etc. It was affecting every aspect of our life. It’s a daily discipline to control my thoughts. I strive to keep it positive and focused. Control. I’ve given up on the idea of control. I’m certainly not in ultimate control. I often pray that God would guide my thoughts to His. I love the verse in Philippians. 4:8 “And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.” How beautiful and true is that? And, in a way, offers a little control back in our life. When I fix my mind on this, and pray this way, I can feel my thoughts drift away from the horrible scary, towards that which is most lovely. I’m not willing to waste my days on misery, negative contemplation, or fear. It’s a daily battle; especially when Sanfilippo
shows it’s life stealing, horrid, evil, ugly face. I refuse to dwindle or let that evil win in this brief and precious time we have together. I choose most often, that which is pure and lovely. I get to call her mine. Livia and Finley are the pure lights in my life. Their little lives have taught me more than I have ever learned. Even in the midst of this terminal diagnosis with Livia, life has never felt more meaningful and fulfilling. I feel equipped with what I will need to survive this life. It’s freeing and humbling. I still have a lot to learn, but embracing the pain and loving through it is how I know how to survive.
“God will never give you more than you can handle.” I can’t tell you how many times I’ve heard this. People say this with the best intentions, but I can’t stand it. I respect it, but completely disagree with it. I don’t believe this because if it were true, then no one would have trials. No one would grow. “Easy” has never been promised. What I believe is that we are equipped with everything we need to survive. To me, L O V E is the resounding theme. I’ve never felt more fully alive and in love than I do today. This journey that we are on has made me feel human. I know that sounds funny, but before now, I felt as if I were skating through life, unscathed. Now, through trial and pain, moments are more brilliant. Time is more precious. Lives matter more. I’m not comparing who I am but rather embracing what I believe in and loving through it. Proverbs 24:32 “I applied my heart (my love) to what I observed and learned a lesson from what I saw.”
This lesson, this trial has fully equipped me with love, and that’s all I need.