The silence in my house this morning was deafening. Sleep has been hard to come by the past several days / weeks and I often find myself awake before everyone else and alone with my thoughts. The past 3 days it has been my thoughts and the GIGANTIC knot in the pit of my stomach…so that’s fun. 😞

I find myself constantly wondering if we are making the right decision by choosing such a radical procedure for Everett. I mean after tomorrow, half of my baby’s brain will no longer function the way it was designed to (side note…according to his neurologists, it doesn’t exactly function correctly now due to the cortical dysplasia…but hopefully you get my point). The surgery will at least temporarily rob him of his motor function on the right side of his body (with intensive therapy post op, he should hopefully regain a large portion of this back as his brain re-wires it self), he will have to relearn how to crawl, how to walk and how to feed himself. The surgery will also cause a permanent loss of his right peripheral vision in both eyes. I mean that is A LOT to process right?!? All of this is made even more overwhelming by the fact that there is a global pandemic raging in the world right now. Everett’s surgery is considered to be urgent and high priority due to the catastrophic nature of his seizures but from the time we agreed to the surgery until the actual date of surgery will be less than 4 days. They have to prioritize his surgery as to hopefully avoid any “surge” in cases of COVID-19 at UCLA. Needless to say, Brandon and I haven’t had a whole lot of time to process the gravity of the situation we are facing…I’m pretty sure this is one of the biggest contributors to that pesky knot in my stomach that won’t go away. 🤷‍♀️

Here’s what we do know, if we were to do absolutely nothing, Everett’s seizures would continue to happen resulting in a complete loss of his developmental milestones. The seizures would eventually worsen causing catastrophic and devastating damage to his still developing brain. As his parents, we cannot allow that to happen, and as his mama I cannot continue to watch my boy slip away from me. So we made the decision to say yes to surgery and to follow the plan that a brilliant team of world class medical professionals feel will give Everett the best chance at a seizure free life. In life there are very few 100% guarantees, but Everett’s surgeon has said that he gives the surgery a 70-80% chance of curing Everett’s epilepsy for good. I made the statement the other day that I’ll take 70-80% over 0% chance any day. But regardless of those odds, coming to terms with sending my baby off to have brain surgery just isn’t very easy.

My mama heart hurts, I’m scared and my anxiety is through the roof…and there is still that annoying knot in my stomach that just won’t go away. But I don’t want to unpack and live in the darkness and allow myself to be in a constant state of despair. I am trying every day to find the good in this and to trust wholeheartedly that Everett is in the best hands possible and that God will move powerfully tomorrow. So, as much as I hate the silence, I am choosing to embrace it and do my very best to find a few moments of peace in it.


7 thoughts on “Silence…

  1. Sweet Sara, this brought tears to my eyes. I cannot fathom the worry and anxiety that you and Brandon are going through. I wish there was more that I could do, but know that there is an army of loving supporters behind you, praying for the best possible outcome. I love you three!

    Liked by 1 person

  2. There is an army of prayer warriors and much love surrounding you. Thank you for sharing your heart and giving us the privilege of being on this journey with you.

    Liked by 1 person

  3. Sara… our love and thoughts go out to you all.

    I know all to well that even though everyone who has gone through this say they would do it over and over again because it was worth it, is hard to believe. That pit will grow only larger unfortunately, and the hours the surgery will take will feel like an eternity… but I do promise you, when you finally get to see his eyes open after it is all over, you will find peace. Our roads are so unknown, but I know God has a plan for our little ones, and it will be better than any of us could of ever dreamt of.

    I can’t help but read this with tears in my eyes reliving what you are going through at this time. I pray for peace for you and your family.

    Liked by 1 person

  4. Thank you, Sara, for sharing your heart and your fears. Like Kim Ummel, I’m so glad you are willing to let us walk this journey with you. I am praying for your peace, for some sleep tonight, and for a true sense of calm while Everett is in surgery.

    Liked by 1 person

  5. Like I mentioned earlier, we all are in in constant thought and prayer for you, and all our family and friends who love and care for you all. So are the prayer warriors at our church. Everett is porobably in surgery as I write this post. Dear lord, watch over Everett and his medical team, give special guidance only the creator can give to the human skill treating him.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s