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.)


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!