“When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.”
You may have sensed I am back for a reason. Back to my safe place, the place I think about when I get overwhelmed, to take refuge in my words, as little by little the hard casing that keeps me mostly put together each day starts to chip away and suddenly I feel each and every one of the hundred reasons to cry as if they are the each and only one fighting for my attention.
I can feel it as it happens. Events, things beyond my control creep in, stripping me of safety I can usually find in optimism, a smile, a laugh and my ability to compartmentalize through work and day- to – day life. But eventually, no matter how well I think I have done, or how well I am “dealing with things,” it comes back around as an uneasy feeling in my stomach that creeps up through my chest, constricts my breathing and hurts my heart as I blink back tears…it is fear.
Over the past few months several moments, actions and events have come together to begin the drum beat of anxiety and sadness. I am not depressed, I am scared.
Under normal circumstances these things happen in isolation and it’s easy (or easier) for me to see past them as to what’s next. What’s the plan I need to implement to get past it, but then 4 weeks ago something happened to my precious E and I have not been able to shake the fear for it is grounded in the deepest love.
We have become accustomed to everything changing in an instant, so that morning when I caught E jerk out of the corner of my eye as she sat in her chair at breakfast, I knew something was wrong. She had not been herself that morning and I could tell she wasn’t feeling well, but she wasn’t warm so I thought there was no real risk of a seizure, and I was wrong.
As I unbuckled her and swept her up in my arms, I could feel my heart racing and my stomach dropping. I never knew what these moments would bring, how long they would last, what would happen next. As I pinned E to her side on the couch and suctioned mouth so she wouldn’t choke, I felt the peace of the past 5 years wash over me. This was somehow its own weird form of normal for me. I hated that moment.
After only a minute the seizure passed and E rested peacefully. Over the next 24 hours, she would have 23 more seizures, all with varying durations and then there was blood. I think it was the third seizure where I began to truly cry as I held her in position, looked helplessly at my dad and KSP, and prayed out loud that she would be ok, she would come back, she would stop. Throughout the entire day and night we repeated this pattern and the vacillating between exhaustion and seizing. My only reoccurring thought was, “I know there is a reason,” I know there must be a reason.”
Even now as I sit here, I don’t understand the reason. I know I was chosen for E and she for me. But as each passing day seems to throw another challenge for what lies ahead, my chest gets the too familiar tightening feeling. The lump in my throat swells as I blink back tears and worry, shame and fear. Worry for her future. Shame for my feelings of frustration and questions and fear that I am not doing everything possible but mostly fear of what’s left of the unknown.
When E was tiny, it still felt like we had so much time to figure it out, but with her 5th birthday just days away and the new threats to her daily life and my sanity, that seem to present themselves without warning or care, I feel the clock ticking. Like a big giant 30 second-hand echoing in my head. Seizure medications, trusts, estate planning, school preparations, therapy accommodations, it’s like wave after wave or inexperience and unknown crashing down, threatening to grab me, sucking the oxygen from my lungs in an icy swirl of flailing arms and legs trying to find which way is up.
Choosing who gets what, planning for all of E’s arrangements. Who will care for her if something happens to us, and what is something happens to them. How do we prevent her from getting turned over to the state? How do we afford it all? How do we make sure Q and M know they are loved and no matter what happens we had to plan for E because we can’t put it on them to take on such a massive responsibility?
And then, I stop. I breathe. I cry. I come back here. I put it all out into the world and hope that is comes back to me in some organized fashion in my head.
I take myself outside of me and look around at all the other people that find such joy to have E in their lives and by virtue of her, we get to receive them into our lives and find our own comfort and joy. I think about the families I have spoken with and how what we have learned has been passed onto them so they can try to find their own sense of peace in this world of unknown. I think about my mom and dad and KPS’s mom who can be with E and really see her just as they do and not with the veil of protection and sometimes anger I find with the outside world for how they look or interact with her once they know something is different. I think about how everyone roots for her and gives us such overwhelming support and love that I marvel at how lucky we are nearly everyday. I think about Q and M who are thrilled with her progress and allow for her unknown grievances against them. I think about how our eyes are opened to a world of compassion and empathy beyond us to other families who have it far worse than we do.
As I sit on the plane and type this post, tears fall from my eyes. I am scared (and quite frankly the girl next to me is probably scared too!)
Change is afoot. Life is throwing reasons to cry. As of last Friday, E will now go on seizure medication. Since her last bout of seizures, she has started having more frequent mild everyday seizures and while I had desperately hoped to avoid this medication, it seems it is another milestone in this crazy journey. I see her growing and changing and time feels like it’s slipping away to give her everything she needs and deserves. The tears are always near.
And now, I stop and remember E. I feel her in my soul reminding me there are so very many reasons to smile. She and her brother and sister are here. She is happy. She is joyful. She knows she must work hard and she doesn’t know anything else. She knows her giggle is infectious and her smile even more. She knows to trust us. She knows her accomplishments come in baby steps not huge leaps and she knows that we must take one step at a time. No matter how unstable it may feel and sometimes we may fall down, we can’t sit and cry, we must get up and move on to get better. To find stability. To create confidence. She shows life everyday 1,000 reasons to smile, and in this moment, I know my sweet 4 year old E, who does not talk, yet tells me a million things, is exactly right, through her smile.
No matter what we are all going through, even if the smile is unstable, it’s still our choice to choose the smile through the tears and in that choice, if only for the moment, lies “anewfavoriteday.”