Sunday, February 5, 2017

Standing up without falling apart

This year has broken me more than any before. I have often felt alone. Yet I am still confident we are moving in the right direction as a family. It is hard when relationships change and fall away. It is hard to accept that differences in belief, or philosophy, or perspective might truly be greater than any commonality or connection can hold together. And my perspective, and expectations in some of my relationships have shifted drastically this year. And it breaks me up. 

I have felt so bound by the ropes of Tuberous Sclerosis. A fear of loss I have never faced before this year- and the anxiety it produces after its threat has past has not ceased to be present. And in all of this I keep coming back to the fact she is not mine to keep. 
But the heaviness that comes with the words “incurable disease” have settled in. 
Along with the continued daily grind of therapies, school schedules, doctors appointments, and illness. 

A few weeks ago during worship at church I so clearly saw this picture of me laying in a dark room curled up on my side. Truly unable to move. “bound” by the weight of this disease. By the isolation it causes, the strength it requires, and the lack of understand by those I wish understood most. Bound by the feelings of inadequacy, of being overwhelmed, and knowing despite all my efforts it would never be enough. When I say the room was dark. I mean black. Like when you walk from a bright room into a dark one and are momentarily blind.  Jesus entered the room. Silently.
He just sat next to me, taking my hand in his.
He didn't lead me out, he didn’t tell me to get up. He just made it known I was not alone. By not pressing me to get up, his gesture showed me it was okay to be in the season I am, that my dark place was understood, and it wasn’t shameful. But his presence gave me a clear picture that He who bore it all for me on the cross- was with me even in my earthy conflicts. 

This weekend at another church event we were encouraged to write our places of shame onto a note card- our places where we didn’t feel enough. Of course I wrote about this. After I did immediately this image of me in the dark room crept back into my mind.  Except a door had been opened, light flooding into the room. Jesus slowly stood next to me and said- 
“Let’s go. When you are ready, lets head into the light”. 

If you don’t do the “prayer thing” or have a relationship with God- that’s okay. You probably know me and know I’m not crazy. So just take this for what it is- to me. 

I have so much to grieve (and equal amounts to be so very thankful for, but grief is still valid in this world, that is so different that what was planned).  Recently my counselor challenged me with the idea that I could grieve these things, without falling apart. Which seems impossible, because they are dark and heavy, and energy zapping. 

So maybe this is my attempt to do that. 
(Or maybe it is just a completely discombobulated blog) 

When Emmaus was in the hospital even after she was off the vent things were dicey. She had ICU delirium. (Caused by the large amount of meds, and very little rest she was actually getting, content stimuation, ect) One night I went home after being at the hospital for a week plus. Feeling exhausted I stayed at my parents. Because I just needed help with the girls. I got a panicked call from Dan in the middle of the night. Telling me to come. That he was afraid she was dying. Basically she was stiff, posturing, screaming, totally out of her mind withdrawing from meds, without appropriate management basically. I raced to the hospital fearing the worst. When I arrived she had finally quieted after close to an hour. Dan was sitting behind her holding her as tightly as He could. He was sweating, crying. 
These moments. These things. That fear. It haunts me. 
I won't soon forget the nurse with her foreign accent saying “we aren’t sure what is happening” as I raced down the highway at 2am. Me shakily asking her  “is she dying?”. Those things just don’t go away. 
However, in a busy life, that never slows down, these things aren’t easy to process. 



I want to stand up. To walk out the door into the warm sun. But I think I have a lot to let go of before I have the strength to get to my feet. Even after these things are processed and released- they surely will have left me marked. But I long to get back to the capacity I had before this. I need the emotional space all of this takes up to be free again. 
So I am gonna try to grieve these things, without falling apart. 

(Although I have been weeping as I write this inside of starbucks for an hour #awesome. Next time I will write in a less public place) 


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Friday, January 27, 2017

thoughts for today.

The weight of the world is not mine to carry. But some days I feel it on me.

I couldn’t sleep last night. I fell asleep on the couch around 10. Woke up at 12 and headed to bed. Dan remained on the couch, because once he falls asleep it is game over. There is no convincing him to move.  I couldn’t get the day out of my head. When you have a child with complex medical needs and learning needs a lot of things have to work together to give them what they need. And yesterday I realized some of those things had fallen apart. As I sat in bed recounting the day, wondering, wishing.  I couldn’t stop the tears from flowing. Even now typing this I feel them creeping into the corner of my eyes. Her therapists become like family. The love they have shown her, the skills taught, the assistance they have given us, it runs deep into my heart. And when they leave suddenly it breaks me. And then I am left wondering- my sweet girl that loves these people so dearly does it also break her? Has she been watching the video of her favorite therapist 100x a day because she misses her? Or just because she likes it? And truth is- I will never know, because she can’t tell me.  I knew this transition was coming. But we intentionally chose to keep her in the same place for an extra school year, just give her and us a year of ordinary. Last year pummeled us. We left it feeling bloody and bruised hoping for a little bit of rest this year. Last night I couldn’t get my mind to rest and I felt myself more than anything, wishing I was holding Emmaus, breathing in the smell of her sweet hair. So I got myself out of bed and went and got her and brought her in to sleep with me.  The peacefulness of her slow deep breaths, feeling her chest rise and fall, the warmth of her next to me- it reminds me that it all will work out. That I am lucky she is here with us. (FYI she might have smelled more like poo than sweet- but I still enjoyed my snuggles) 
Sometimes this stupid disease makes me blind to the little moments. I see big picture things that need to get done. My whole world becomes a huge to-do list of yucky paperwork and therapy goals. All while trying to manage Emmaus’ health. When I look at my calendar and see 3 specialty doctor’s appointments in a month and know we will likely have another two for illness it makes me break out in hives (okay not literal hives). It feels like a fight. Always a fight. And then when you add the current political climate, man. I just feel the weight of it all on me. I love justice. In my core I believe in doing the right thing. And in a world that is so broken. With a daughter whose genetic code is so broken- that feels heavy.
I have to step back and remember. I am not doing this alone. We have a whole community behind us. We have support. And though what felt like firm foundation might be a bit weak at the moment- my foundation truly was never in Emmaus’ school or her treatment plan (although it is lovely when those things feel in order). So in these times I have to come back to my TRUE foundation.
He tends his flock like a shepherd:

    He gathers the lambs in his arms
and carries them close to his heart;
    he gently leads those that have young. Isaiah 40:11


This road we are walking isn’t easy. But it is helpful to be reminded that I love and serve a God that is gently leading those who have young. Me. (Thanks to my besties for directing me back to my true foundation via the most hilarious text thread that talks mostly about pizza and how we desperately try daily not kill or screw up our children. Oh and poop. There is lots of conversation about poop. And there is some encouraging scripture sometimes too.)


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Monday, January 2, 2017

Reflections on 2016

I feel I would be amiss to not reflect on 2016. While I haven’t done much blogging this year it is a goal to blog a bit more for the next. 

While the masses count 2016 a terrible year and even for us personally it has been rough. I can’t help but be grateful as we exit 2016. 

This year has held a lot of change for our little family, in the midst of hard things, I am proud of Dan and I stepping out in faith, selling our house, and moving to live next door to friends to work on intentional community. That was hard. It wasn’t the smoothest of transitions, our families thought we were crazy, but we knew it was the right choice for us. 
Dan rocked his Insurance licensure exams in the midst of Emmaus being in the ICU. And successfully changed careers this summer. 

As I reflect while it is intertwined with hard things, more it is a reflection on the the growth that has occurred this year. 

This year I learned that my child is not mine to keep. That I must be willing to submit her life (all of their lives I suppose) to the Lord. To hold them openly in the palm of my hand, and trust that even through the darkest nights God will not leave me alone. 

I have learned that my family stretches far beyond those who I share DNA with. And we have people who will show up. To pray. To mow. To bring caffeine. To sit with a very unsettled child in the middle of the night to give us a break. 

This year I have begun to focus on what it looks like to the be healthiest version of myself possible. Instead of thinking I am super-human and need not pay attention to my own needs, I have started focusing on my physical and mental well being.  I am working on good boundaries, clear communication, and physical health. We have started to rest weekly as a family. To pace ourselves, to give ourselves permission to slow down. I am learning have to take care of myself if I am going to be a pillar for my family, and strong for my girls. 

I have spent half the year with an amazing counselor processing everything from the foundations I learned in my childhood, to major differences that are had in some of my adult relationships. Processing grief, loss and why I feel alone when clearly I am not.  Really plowing the ground of my heart, emotions, and spiritual life to allow fresh rain to fall on it. 

I have traveled a lot this year. Which, if you know me well breathes life straight into my soul. I went to New York to advocate, teach and meet some wonderful other TS warrior mamas. I took a trip with my Mom, Shiloh and sister-in-law Sarah to California. Dan and I got an amazing get away to a five star resort in the ozark with some of the best food that I have ever eaten. And we took the most magical family vacation this December. 2016 converted me to a Disney Lover. I see many more trips in our future. 

I have started working with a new ministry, my contribution primarily being on their social media side. 

While 2016 has held some of my deepest, darkest, hardest moments. I am so proud of all that has happened as well. In fact, I feel like I dominated this year. Wasn’t always fun, or easy, but overall it was good! 


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