It’s been a hectic few days for the Cervantes family, so when our friend Bud (aka Emma/The Kartoffel’s dad) reached out and said he had finished a guest blog I’d asked him to write, I felt instant relief - I was off the hook for the week! And then I read what he wrote and spent the next fifteen minutes staring out the window processing it all. Holy crap - I don’t think I have ever read the medically complex parenting journey spelled out so clearly or so beautifully. Seriously, this post is poetic. It is my absolute honor to introduce you to Star Dadvocate, Bud…

Growing up we had a designated door jamb where we marked our height. Little notches displaying the jaw dropping expedience with which childhood passes. I was blissfully unaware, as all children are, of how these nicks represented my inevitable descent into the terrible freedom that is adulthood and instead was fascinated in seeing how much I've grown. As time went on and more siblings joined the ranks my interest moved outside of myself and was curious to see how other family members stacked up against my stats (for those who want to know, I am the shortest of my brothers but not the shortest overall). This was such a salient part of my childhood that to this day I look for these growth gouges in the doorframes of friends' homes.

I typically saw anniversaries much like those notches showing how much time has passed. I'd hold up the twine of my life and tie knots off with each event until we got to the big turn around and start it all over. But also just like those notches it is becoming less about how many trips around the sun we have made and more about how the relational frame in which we are growing has changed.

We're moving into our fourth year having pachygyria be a part of our lives. Four years of this assimilating, accommodating, stretching, breaking, crying, shivering, heaving existence that promises little and takes much. So, what have we learned? Are we finding light in the dark places, is there joy to make the pain worth it and are we settled into our new normal? Have we reached acceptance?

Yes. But also a sonorous no.

I think that the ability to find the silver lining can at times trick you into thinking that there is, or at least should be, more lining than cloud. This is a dangerous headspace to be in because if your life does in fact have a surplus of clouds you will convince yourself that the problem is you. If you only looked harder you'd see the light, if you only worked harder the sun would come out, if only...if only. Bad moments come but they go, just like the good moments do. Some days are fine, most days a little harder. What we've found instead is when you let the clouds be the clouds then it is not as heavy a burden to bear. If you search the clouds only for the light behind them you'll miss what can be found in the storm.

This is where being supportive, as a friend, family member and even as a spouse, can get tricky. It can be tempting to reach first for that bucket of sunshine and splatter it all over the walls like a Gorky at the Guggenheim. Insisting everything is fine, that everything will be okay, or that someone else you know made it through worse before denies a trial that is uniquely theirs while offering little reassurance for a life that is rarely fine with no guarantee of being okay. Encouragement that denies or discounts the pain and struggle, even when given with the best intentions, is more often marginalizing than motivating. Allowing joy to flutter in and out of our days like a butterfly is far better than catching and forcing it to display its wonder from inside a jar. I have been humbled by the process of learning to be a gentle yet reliable spouse that is willing to sit and watch clouds and butterflies, as well as mourn their passing, without needing them to be anything else.

Knowing what to do to care for the Kartoffel is simultaneously impossible and the most natural act we do. We've spent four years trying this treatment or that treatment. Four years pushing and pulling and fighting with every professional (from service agencies to insurance agencies to medical agencies) that has been assigned to us. Four years of misplaced frustrated outbursts, of the Kartoffel screaming and gasping for relief through appointments. And yet, after all this, it wasn't until we took a breath and realized that her ability to walk or talk or rollover doesn't necessitate wellness. That 'seizure freedom' may not mean 'free from having any seizures' but rather 'free to live alongside seizures'. We've learned that making space for that reality is not the same as pretending it doesn't exist or giving up.

Being Emma's parents is about more than just medical advocacy it is advocating for all of her; including advocating against another procedure or medication if necessary. And with this we learned that it is not so much what we do that will influence the character of our Kartoffel, but what we are. The essence of the healthy matrix for her growing self is a mature, cohesive parental self that is in tune with her changing needs. It is an active and recurring choice to be the kind of parents we believe to be best. Which means we are constantly looking at the hard bits of our lives, not just swallowing them and moving forward. We aren't raising just a complex medical patient we are raising a human.

This is our beautiful disaster where we live in a sort of comfortable misery. This is the house that grief built. It has a draft and creaks in the rain but it can also be warm and quiet in the sun. Here pain and joy exist, not in competition or in spite of each other, but as siblings. Not one greater than the other, not one with the sole purpose to cancel out the other, but hand in hand knowing that both (and everything in between) are what make us whole. However we might hate the situation, and sometimes even hate ourselves in it, we understand that we deserve gentleness, patience, and respect.

All of this is not so much something we have accepted but rather is acceptance itself. Apophatically it is not mere understanding, nor denial, nor a predilection for your situation. It is a radical embracing of our reality, the ability to feel the full range of our thoughts and emotions. And it is doing so free from self-judgement without needless distancing or clinging. It's not finding closure, but openness. We never arrive, rather we are always becoming.

In this home we've built, with notches in the doorframe and clouds in the corners, acceptance isn’t when you pack up and move out it’s when you unpack and move in.

-Written by Bud Hager, @duke_fitz on instagram