finding a black hole on my brain & other things that were not on our summer bucket list

Life today in some ways unrecognizable to a few weeks ago & we are fully on the struggle bus right now.

Let’s cut to it; I have been diagnosed with MS Multiple Sclerosis.

I had to stop typing that sentence 3 times because I am still. in. shock. And it is terrifying and so far it has been pretty crappy & horrible. Horrible crapiness includes but is not limited to: numbness in my legs and arms, a crazy phantom burning in my shoulder that made me feel like I was crazy for weeks, 2 spinal taps & another blood patch spinal tap in 5 days because I got a spinal headache that incapacitated me for days, the left side of my body completely freezing for minutes in front of the kids (seriously so scary and I thought I was having a stroke),  steroid infusions, over 3 hours in an MRI machine which involved one panic attack, and so. many. tears. from me and the kids.  So, I have lesions on my spine and brain (including what the MRI report called a black hole— AND SIDE NOTE  can we all agree whoever decided to write that in reports should be publicly flogged?)….sooooo….how’s is your summer going? 🙂 So life is overwhelming and feels really heavy and I don’t really know what is next.

So there are so many unknowns right now but this is what I do know: I am scared and I don’t even know how much I do not know about this all yet.  I feel very weak but that is often when God does His best work in my life.  The truth is when I feel like I am always winning at life I really have no need for a savior and I often stray far from Him. I am; and have always really been, the walking wounded in desperate need for a savior it is just now I am physically also showing signs of my internal state. And those closet to me know I don’t do sick well. As much as I know this is not true I see it as weakness in myself and struggle so much when I am unable to DO and GO because I really LOVE DOING & GOING. I know that this figuring out what life looks like now will require lots on unlearning and relearning.  It will require lots of grace with myself and patience for us as a family. It will mean I battle deep held and false beliefs about my worth being in what I do.  It will usher in mourning and a sense of loss. My Dad has MS and I know it looks different in everyone so there will be a steep learning curve about what this means for me and my body and my family. There will be a lot of waiting but this waiting and wondering and watching can be purposeful- at least that is what I am clinging to right now.

Here is what else I do know: I know there is not a day that goes by that the amazing group of people who have decided to love us even in our ugly SHOW UP.   You roll up with lattes, guacamole, Thai food (my 3 primary love languages), & dinner for my family. You drive my pathetic crying self in your backseat to doctors offices and sit with me at the ER. You; our parents, watch our kids and comfort us. You distract me with funny stories while needles are in my back. You send inappropriate but perfectly well timed texts. You take my kids and make them tacos and love on them. You sit on my floor and fold my laundry without being asked. You hold my hand and pray with me when I feel panic taking over my body.  You hustle for childcare for your own kids and sit in waiting rooms just so I know I am not alone.  You text & call everyday and remind me I am not alone. You send cards and gifts from afar with scribbled words that contain Holy Truth and hard fought & learned lessons. You all know that we profoundly need each other and are not afraid of the mess. Thank you. I do not deserve the care of our people but I am changed by it and forever grateful.

Friends, I also know that we have been through hard and terrifying times and EVERY. TIME. JESUS HAS BEEN THERE before we even had the faith to search for Him.  This is what these rocks remind us of. A dear friend brought this over and explained to the kids that each stone is an Ebeneezer stone for here, “The Lord has helped us this far.” (1 Samuel 7:12). Each stone represents something we need to remember, to commemorate, to praise God for His goodness in a desert.  Life is out of our control and some days I can forget that is the allusion of the every day.   These moments remind us we can not control the brokenness of the world; there are interruptions, injustices everywhere we look, traffic and minor annoyances, stuff breaks, children die, people suffer, and our bodies fail us.  Many of you are in the midst of your own darkness too.  In the dark and the ugly and the fear He is there.  He not only forgives and sustains, He gives abundantly and molds me into His likeness. My husband loves me and has and will sacrifice for us and my kids are strong, kind, resilient, compassionate little people who will not wilt under this new pressure (remind me of this when I forget).  In the hours I could not sleep last night (#steriodinfusions) I went through an entire box of Kleenex (bc #crier) and God asked me to trust yet again that this thing I think will break me will remake me.  And that the clearing out of and death of some things will make room for new things to grow.  He dared me to find joy in this thing that right now feels like death to me. And I am going to do just that.    

I write this to include more of you in this community, because I believe there is value in sharing the story of the right now. Not just when I find the meaning in all this or when I know more but right now when I am terrified and have no idea what this looks like for our family.

Also, if I forget something you tell me, am inconsiderate or rude, or a complete scatterbrain, or act crazy in any way I reserve the right to blame it all on the black hole in my brain.  I gotta use that right?

Annikah sat with me today to get my infusions and prayed for me and said she was so proud of how strong I was and all that all I have done over the last few weeks and I remembered more of who I am: I am a bad ass who cries a lot & Jesus is in this & with me & I have amazing people I don’t deserve in my life who will walk with us & we will figure this out together.