These Genes Fit Just Right: an introduction to relying on others

“A proud man is always looking down on things and people; and, of course, as long as you are looking down, you cannot see something that is above you.” C.S. Lewis – Mere Christianity. This probably says more about me over the past decade than I care to admit publicly. It manifests its self in control. The desperation for it. The grasping and scratching at the air. Control over circumstance. Over the unknown. Over the means to provide for a 19-month old’s escalating, and troubling, health care needs. Control over perfection. Perfection in fatherhood. In husbandry. In being a respected professional. All of which I have failed at miserably at one time or another, and perhaps for recently than ever. 

Why do we feel the need to say things like “I can do this on my own” as we face challenges determined to break us? As I continue to reflect on “lessons learned from a brain-injured child”, I’m suddenly fixated on the fact that, the more control I seek, the less I have. The more I try to shoulder alone, the less capable I am to handle the smaller burdens in life. You want to understand the pinnacle of vulnerability? It’s asking for help when you don’t really want it. And while this apparent glitch in character seems much more prevelant in my personal life than professional life, it nevertheless exists. 

I’m increasingly self aware, however, of the foolishness in such a mindset. But I say one thing and do another. I proclaim to be a man of faith and feel the exact opposite of that proclamation as it leaves my lips. And of course I am not alone. I should probably substitute pronouns, “I” for “We” here. It is one of the fundamental tragedies of many believers, I suppose. It only begins to explain why we’re all such hypocrites. There is a scary question that lies behind this realization, but I will have to unpack it at a later date. There’s also a sizable piece of me that is simply scared to talk about it. Alas, I’ll attempt to overcome that another day. 

Today, I set my foolishness aside. At the advice of our doctors, our new friends who have dealt with ADSL children for far longer than us, and our family and closest friends, we ask for your help. If this is your first time reading Lessons Learned from a Brain Injured Child, these three posts should bring you up to speed – Re-Evaluate Everything, Talking about an Early Exit, and Broken Expectations. 

In short, we are up against some challenging knowns and unknowns with little Willa. I have explained these in more detail via the These Genes Fit Just Right Campaign described at the end of this post.  

Where do we go from here?

Sarah and I have agonized over this for weeks now. Trying to come to grips with the emotional challenges of a rare disease is one thing. Coming to terms with new financial priorities is quite another. Neither of us is keen on the idea. But there’s simply no prideful path forward. We need to raise money for Willa. Just as much for the knowns as the unknowns.

But how do we do something like that in the right way? How do we turn something into a passion project for Willa rather than a fundraising campaign? 

Our answer to these questions has come to us through FOOD. And I don’t mean a one time event. Oh and I’m not referring to a bake sale either. I’m talking about cooking for Willa. About bringing people together time and again, in a variety of ways, to share our love for food, community, and Willa. I’m getting at a series of unique dining experiences in our “underground kitchen”. Or perhaps serving take home options from that underground kitchen. If you don’t know what the heck I’m talking about, if the phrase “underground kitchen” has never entered your vocabulary, don’t worry. You are not alone. I can assure you. You’re just not hip to this yet. But you’ll learn in due time.

Right now our focus is on bringing a new healthy baby into this world at the end of this year–and frankly, getting through tomorrow. I expect this cooking for Willa project to come together sometime in the new year.

GoFundMe

In the meantime, as we continue to plan and adapt to our new reality, it struck me that the little passion project I just described likely cannot touch everyone. Geographical limitations abound, right? So we’ve started a GoFundMe campaign to allow our friends and family to touch Willa from afar. If you are so inclined, you can visit and donate here. All proceeds will go to the knowns and unknowns described in the campaign story of These Genes Fit Just Right. 

We lean into our future with our sweet Willa with joy and anticipation. Thank you. From the bottom of our hearts. We are forever grateful for your love and compassion.