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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Wednesday, August 31, 2016

The Jungle

I knew it would come. And when I felt it coming I was proactive. My breakdown, after Emmaus being so sick, after the chaos of the home repairs and move. I knew it would creep in. So here I am faithfully attending counseling. Again. Counseling- you know, the magical place you go to spent hundreds of dollars to iron out the wrinkles that reside in the depths of your being. Every week I feel like skipping. Every week I show up. And after the fifty minutes of hard work I leave more aware, more raw, leaning into this vast expanse of grief that resides in my life.

I feel guilty for grieving. Somewhere I have the belief that because God spared Emmaus' life I should only be thankful. And I am indeed thankful. But also there is the ever present grief that is like a veil over my life.  The internal struggle in the fact that she SHOULD NOT have the battles she does. That the brokenness of Tuberous Sclerosis isn't fair. It is not right.  And in a whole perfect world- it just wouldn't be. This spring I went from "knowing" that it was likely I would out live Emmaus (someday). To the very real reality of- "she literally she could get sick enough that it could happen any time". Bam. That is a lot to deal with.

Anyway- today during counseling my counselor was weighing in that he felt a tension in holding this grief with me. His natural bend was to suggest we should find a way to figure it out, but that in all reality this just isn't a grief you deal with, and move on from.
When I was 21 and broke up with my ex boyfriend who I was SO SURE I would marry. Who I cared about more than even myself at the time- it wrecked me. HARD. So I went to counseling to try to pull myself back together.  And I grieved, healed, and moved on.  I have been expecting to do that with this grief. But the truth is, when you are grieving your child's life long ailment, her struggles, how it has changed and impacted your life, and the hardness that is brings- it isn't a "deal with it kind of grief". My counselor called the grief I am dealing with "Wild" and something just clicked.

My grief is wild. Just like the love I have for Emmaus is wild.

If you know me you know I love clean, but whimsical landscapes.  I would always choose for my yard to be manicured, but with some purposefully whimsical landscaping. Lanterns hanging from the trees, a stone path to walk along. Neat. Tidy. But room for a little contained wild.

But the grief of having a child with a chronic disease. The grief of special education, and of silence from her sweet face. The grief in every seizure, sedation, surgery, med change. The grief in the very real prospect of losing her. That isn't a whimsical landscape. In fact it is a FREAKING JUNGLE.

I keep trying to prune the jungle. And then I get so discouraged and annoyed that all my pruning isn't doing much. And I even wonder if my inability to prune the jungle is because I am weak. But LET'S BE HONEST trying to prune the jungle is kinda impossible.  It is never going to be an organized, whimsical landscape.
So today I start trying to live in the jungle.  (I hope there aren't many bugs. And if there are I am gonna need some DEET. Forget your essential oils. I need DEET. I hate bug bites. Bugs. BAH- I digress)

Anyway- these are today's thoughts on grief. It is wild. And I need to learn to live and thrive within my grieving. Because it isn't going anywhere. It isn't a grief you fix.


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Saturday, August 20, 2016

My Three

Today Shiloh sweetly helped Emmaus get her shoes on. Without being asked. In fact- I don't think I have ever asked shiloh to help Emmaus get her shoes on- so it was likely all her idea. She put them on her all by herself with Emmaus trying to kick her in the face the whole time. Then checked with me to make sure "are dey on da white feet mama? Or are dey bakwards?"  Shiloh also has started praising Emmaus for things. Which might just be the sweetest things I have ever encountered. She also tried to encourage Emmaus to eat her yogurt last night by doing the "airplane" into her mouth.  I want to be more like Shiloh. *Maybe not the whiney, typical three year old melt down parts. But I want to be able to see what people need, and help meet their needs. She is just the best sister!


And then there is this. I mean o.emmmmm.geeee. She now thinks she is a big kid. And it is rude. And cute. She also has such a sweet relationship with Shiloh. They will be besties I have no doubt.
I am so thankful to be the mom of these sweet girls. And I am thankful they have each other. 
...A cord of three is not easily broken. 

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Thursday, July 21, 2016

Lamenting

We moved. It was perhaps one of the most chaotic things I have ever planned.  In fact, nothing went as I planned- imagine that. I cried. Multiple times. I literally felt by the end of the weekend that I had been run over by a truck. So by the time Tuesday rolled around I had done a bit of processing and I found myself sitting in my counselors office lamenting about the woes of moving, of disappointment. And how following this crazy season of life my margin for rolling with the punches is much thinner.
(I realized about a month ago that in all reality I am just not okay after our scare with Emmaus- and so I needed to talk about it. Dan and I had previously seen a great counselor- so I called him up and bam. Here I am again sitting in his office every Tuesday.)
Lamenting.
What does that even mean? That is what he has challenged me to do. Lament. (It means: To express one's deep grief about. Or to express deep regret or disappointment about something considered unsatisfactory, unreasonable or unfair)
So I lament. Holding with one hand the very truths I believe so deeply- God is good, He loves me, and He wants good things for me.
And with the other I scream aloud. THIS IS NOT OKAY.

And you know what? I don't feel like it's okay. I am sure I will find my peace again with the life I have been given, with the reality that my daughter has tuberous sclerosis and that life is often just hard. But right now, it just isn't okay.

I like things to be pretty, to be smoothed over. And so even when things are hard I like to be able to focus my heart on hope. The good. The way God has provided- cause my has He ever provided for us.
So learning that I can have a heart of thanksgiving- and still truly wrestle with these things and not have it be smoothed over feels hard. It is raw and rough and ugly.

So although I have always strived for my blogs to be honest and real- they might not be so pretty for a while.

Because it just isn't okay that my daughter has tuberous sclerosis. autism.
It is not okay that pneumonia almost killed her.
It is not okay that the med that helped her progress had such horrible side effects. And now isn't an option.
It is not okay that she cannot talk to me, or tell me her needs, her likes or how her day was.
It is not okay that she has seizures.
It is not okay that appointments, medicines, and therapies fill her day.
It is not okay that I have to explain to Shiloh why Emmaus can't talk. Or hear her pray that "Mae Mae would have no seizures"
IT IS NOT OKAY. IT SUCKS. IT IS BROKEN. AND UNFAIR. and my heart is broken over it.

But. God is Good. He loves me. And He wants good things for me (And Emmaus!). And in my lamenting- I will never cease to believe or say that. Because it is all I know for sure.




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Wednesday, June 29, 2016

Scars and Wounds and Messy Stuff.

In the middle of the night last night as I was comforting my almost 11 month old for probably the third time that night, laying there with her on top of me because that is the only way she would quiet down and sleep,  I literally had the thought  “I sure don’t like you as much as I thought I would when you were an itty baby” WOW.  That is what 5 years of unpredictable sleep has done to my thought process.  Don’t worry- I liked her again this am when her chubby self got to belly laughing.  The funny thing is- three kids in you would think I would have an idea of why the heck she was up so much last night, but I just have no idea. Teeth? Ears? She just want to snuggle? I DON’T EVEN PRETEND TO KNOW.  I swear these kids might be trying to kill me.
We sold our house. We have been thinking about moving for a year or so, and before Emmaus got sick started the process and well now it’s done.  We will be renting in a nearby city close to some friends of ours (like our back yards touch) for a while.  The rest will depend on schools for Emmaus and where God leads us in reality.
Our house sold fast. 8 days. Which felt like 100. On day 7 I cried to my sister-in-law about how “of course our house wasn't selling fast because nothing is that easy for us” (insert deeper issue/feelings  I should sort out).  We had one offer before that which was so low it was a bit offensive.  So I was feeling quite defeated. Beat up. We had close to 75 showing in 8 days and so we basically weren’t home for a week- and then, after my meltdown we had a great offer the next day. 
Let’s be honest- I needed to have the meltdown. Like my wise sister-in-law pointed out I am a do-er.  I am calm in crisis, I get what needs to be done taken care of and then I move on.  And sometimes moving on to the next thing (Like selling our house right after our daughter was incredibly ill) might be a way of avoiding dealing with all the feelings and emotions one is bound to have after such a traumatic event.  Cause let’s be honest- who wants to take their downtime to “work out” all that tangled mess of feelings? So I am going to say that our house being on the market longer than I expected  (I had a bidding war, opening weekend sale in mind) was the Lord’s grace to me so I could begin to deal with my junk.
See the thing I have realized over the last few weeks is that even though I have grown into dealing with the fact my daughter has a rare, complicated, and incurable disease.  Seeing  the reality of just how sick she can get, and facing the fact that one day I may have to say goodbye to her while I remain on this earth is just a little more than I can even begin to process.  I have faced the grieving that has come with my expectations of my family and life being so very different from the reality of them.  But this- this is a whole new set of wounds, of disappointment, of anxieties and fears.  
I started reading a new book today.  Here is an expert from it.
Scars are easier to talk about than they are to show- with all the remembered feelings laid bare. And rarely do we see wounds that are in the process of healing. – Brene Brown
And so I haven’t blogged- because who wants to expose their gaping open wound?  Am I right?

But- I also realize I am not alone in these experiences. We all have open, gaping wounds.  They might be different than mine, but they are present.  And being vulnerable and open even in the hard stuff is important to me.  So there it is.  
I will leave you with this. A sweet picture of Emmaus "singing" as Adele blasted on my phone today. Girlfriend loves some Adele. 

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