Golden bonds of brokenness

I keep waiting for it to get easier.  For the sting of this disease to ease.

My three year old Shiloh is such a sensitive soul. She feels things deeply. She will skin her knee and just cry so hard about it. (for a day. mmmkay?) And then in the days to come will continue to tell me it hurts, she will wince, guard it, and even weeks later she will point out the mostly healed spot and recount the pain of it (And try to con me into giving her another princess band-aid). I mostly ignore her- count it as drama. Because let’s be honest it partially is, but it is also how she is affected by pain. It really bothers her. And then with the next wound it is the same. Over and over again, she doesn’t seem to get much tougher.

And that is about how I feel about Emmaus having Tuberous Sclerosis. There has been so much grieving with this disease. We have gone from Seizures, to brain surgery, to therapies, to seizures freedom and onset again. Autism joined us, and then the sicknesses. The viral illnesses, the mono, the pneumonias. We have joined the medically complex and ‘somewhat’ fragile club.  And I just keep waiting for the pain to stop coming.  Sometimes I Feel like I am the ‘about healed’, hardly visible skinned knee. (You know when the scab is gone, but the new skin is just a darker shade? Not obvious to those around.) But when I think I should be feeling better, a remembering-pain from the depths of my soul comes rushing forward.

In some ways this hospitalization has felt somewhat therapeutic. Last year when she was sick I felt so helpless and like her care was extremely mis-managed until we got to the ICU. And this year I shared our experience, my expertise of my daughter, and her medical team has been amazing. Pro-active. Kind.

And in other ways it feels hard. Heavy. It makes me realize this might be our new normal. Today I cried thankful tears we unexpectantly got pregnant with Lennon when we did. Because shortly after she was born these hospitalizing illnesses started. And I’m confident we wouldn’t be trying to grow our family in the midst of this.  I cried because Friday is Emmaus’ preschool graduation and she will be in the hospital.  I cried because we spent mothers’ day here.  I cried because trying to wrap my mind about fluxing in and out of this type of acute crisis, on top of our day chronic mini-crisis is TEAR WORTHY. 

I find myself waiting to settle into this being my life. To be content with this reality.  In some ways I have found peace with a lot of things. And in so many other ways the core of my being opposes these struggles head on. It makes me feel conflicted.  I want to walk this out peacefully. To find Joy in the crevices of my broken heart. To let life and love and experience pour out of its cracked places. AND IT IS SOOOO HARD TO ACTUALLY DO THAT!!

Time and time again I come back to this. If God cares about me even half as much as I care about Emmaus. If he feels the pain of the deep wounds like I feel hers. If he mourns with me like I mourn with her. I am not even slightly alone in my pain.  Today standing in the middle of a radiology room, after a failed swallow study, I just bawled for my girl. For the losses in her life. For the struggle. Holding her chest to chest, her lanky legs passing my knees. Her still crying from the swallow study, me crying from it’s result. But neither one of us alone. Tears falling from my face I gently set her in her chair, buckled her up, wiped her face, and kissed her tear stained cheek. Still crying  I stood tall to talk to the radiologist and therapist about “whats next”.  And the nurse with us (that I knew, but not super well-) pulled me in so tight. Giving space for my grief by acknowledging it. Not trying to comfort it, just stepping in and being present in the midst of the pain.

There is no shame in broken places. Brokenness is the thread that connects us all. There is holiness in standing with each other in these moments. 

Recently a friend shared with me a Japanese art from called Kintsugi. It is where value is still seen in brokenness. And broken pottery is fixed with a gold lacquer. kintsugi-crack-method-1

The bowl is not useless because of it’s brokenness. Instead it’s brokenness is highlighted. Seen as a part of it’s history, part of it’s beauty.

Today I was pitiful. My thoughts were full of “this isn’t fair” and I spent time stacking all the things in my head that have been taken from Emmaus, taken from me, from our family because of this disease.  And while I must have grace for myself in this space, I also cannot remain here. Because for me I feel the bitterness rise quickly.

May these broken places in my life not shatter me. Or render me useless. But instead become a golden bond of character. Of strength. And beauty.

Peace and love to you dear friends.

Love, La

The Jungle

Pulled from my blogger site written August 2016 

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.

Raising a Sisterhood

Raising a Sisterhood

So I got this really great idea. Start a new blog. Sounds great hey? Except I couldn’t decide on a domain name, and then I can’t figure out how this all works. MEH. MEH. MEH. (Oh and it’s May. And I decided to do this in December)

Can't I just write?!

Raising a Sisterhood. Well seems like a simple enough title right? I have three girls. The #ballewsisterhood or #raisingasisterhood as I hashtag on Instagram. (Speaking of IG- if you want to see cute pictures of my girls and hear mini-musings of my heart head to the social media icon at the top and it will take you right there- fancy right? only took my 75million hours to get that working. You’re welcome!)  Anyway- Truly it is about much much more than that. I have this passion about the sisterhood of women. I don’t know when women learned to be so competitive. I just believe it doesn’t need to be a competition between us. Guess what! We all struggle, we all have triumphs and pretending we don’t won’t get us very far. What if as women we stopped judging each other and offered a helping hand.

I speak to all of this as if I am an expert at it. But the truth is- I was thrown into it without much choice. I was the judg-iest of judgers. I knew everything about most things at one point. Then I had Emmaus (My almost 6 year old daughter who has Tuberous Sclerosis Complex) and now I know nothing. With her things change frequently. And nothing works like I think it will- or the books say it will.  (If you want to know more about TS head over to the TS tab in the menu. JK don’t- there isn’t anything there yet. One day. One day. But not today because I have already spent a gazillion hours setting this damn thing up. The help chat people know me by name and probably know my starbucks order by now!)

But I guess, what I am rambling about is this- What would happen if we “Raised a Sisterhood” between us? If we were for each other. Kind to each other. Honest in our weakness, as well as our success?  What if, with our well edited pictures we captioned our true feelings and hearts?  So that maybe- just maybe, we would have a sisterhood to fall back on when the road gets lonely or hard?

This is how I want to raise my girls.

To truly be for each other. To be each others’ people – fierce defenders of one another.  I will let you know when I figure that out.

I know these three sisters- their mom was extremely intentional about cultivating their friendship. And while I am sure it wasn’t perfect- and they have their issues between each other (this is pure speculation), they like each other enough as adults that they all moved to the same street. NOW THAT IS INCREDIBLE. A family cult. I am aiming for a family cult. (jk. but seriously, I’m kidding) But girls- can you all live on the same street? Cause how amazing is that? Community. It’s Community. 

Cultivating honesty and deep relationships, that is what I write about. I do that through my own vulnerability. I process the grief of loving and living with a child with medical and special needs. And I process the deep joy that rise from the ashes of grief.

I truly believe we are more similar than different in our human experiences. That, although our circumstances are different our struggles are truly similar. So welcome to this space. To me it is holy. And often hilarious. Because I just have to laugh at my life. Or I would cry. Cause OMGEEEE. I have all the small girls and they have all the feelings.

So, that’s what I am gonna do here. mmmkay? Any questions? Comments? (I think you can even leave those below- but don’t quote me on that!)

Love, La