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.
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.