the past two days we have had appointments in preparation for Mikisa’s surgery next week. last night, as i said goodnight to my sweet girl, i had to promise her that she would have a “regular” day tomorrow. that she would be going to school and “no more hospitals.” she didn’t believe me. i am the one who holds her down while she screams during every blood draw. i am the one who held her down yesterday while they ran a horribly painful test to measure her leg function. it breaks my heart that this affects our attachment and trust…things that we have been working on since we met. watching her in pain is gut wrenching. i hate that i have to be the bad guy. surgery is a different level of hard from the typical “hard stuff” involved in special needs parenting. and now, we’re trusting surgeons who we barely know with her life, begging them to please take care of her while they cut her brain in half. it feels so out of control to me.
yesterday, Mikisa asked me why. she said “why they need to fix my brain?” in her opinion, her brain is just fine and she doesn’t understand why we’ve had to go through all of this rigorous testing and all these appointments with specialists. she just wants to be a kid. she wanted to go to school yesterday, and as her tears flowed, i found myself asking “why” as well. why is this our only good option? why does it have to be the most drastic brain surgery? why does she have to live with 1/2 a brain? why has her life been so full of hardship and pain?
i want to be positive about this, really i do. i want to focus on the fact that the goal of this surgery is seizure freedom and a better life for Mikisa [and all of us]. but the truth is, we don’t know what the outcome will be. i try to picture her speaking more clearly and learning and developing, but i can’t. so i try not to think about the future at all. i try to hold on to the present moment and enjoy who she is right now. she is so full of life and love! she lives out loud and she is incredibly brave. we love our Miki girl more than we can say.
i am truly thankful for what this experience is teaching us. we are so grateful that she has access to such good medical care, and that this epileptologist has given us a glimmer of hope for Mikisa’s future. we believe that this surgery will cure her epilepsy, and that gives us so much excitement! we know that God has her here for a reason, and that nothing in these past three years was a mistake. that He even has a reason why it took 7 neurologists before we found one who had some answers. He is showing us so much through our little girl. we have perspective and gratitude for what He has done in our lives. we feel His hand guiding us as we wade through these rough waters. He is with us! He is in control. and that gives me beautiful peace. i am going to rest in Him, even in the midst of my fear and anxiety. His love never fails.
this week has been an emotional one for me. i have moments where i feel paralyzed by fear of what is about to happen. i feel stuck in my mind, and i can’t turn off the racing thoughts. i can’t think about anything other than the surgery. i have dreams about them cutting into her brain. then, i’ve also had times where i’ve felt washed in grace, where i am full of hope and anticipation of better days ahead. it’s an emotional roller coaster ride. but we feel so supported and loved by our family and friends and church community. we have many people praying for us, and your prayers make a difference! so thank you for that. we would appreciate your prayers for peace for all of us this week as we wait for the big day next wednesday. also, if you could pray for Mikisa’s health, that would be good. they said that if she gets sick at all, even a cold, we would need to postpone the surgery. and right now, we just want to be on the other side of all of this.
Mikisa and I had this conversation a few days ago, and it’s too good not to share!
Mikisa: what surgery mean?
me: they will fix your brain
Mikisa: in the hospital?
me: yeah, we will go next week
Mikisa: how? how they get in my head?
me: how do you think they will?
Mikisa: (knocking on her head) with a hammer
me: no, they definitely will not use a hammer.
Mikisa: a screwdriver?
me: no, they will use their doctor tools
Mikisa: can i get bandaid on my head?
me: sure, you can get a bandaid wherever you want
and just like that, she was done talking about it.