Thursday, June 2, 2016

Coffee and God

Life is relatively simple for me. I start my day with coffee and God and consult both throughout the day. It's a concoction that works wonders and can tackle all of life's burning questions with an elevated alertness and acuity. God and the coffee will have me on the ready for the curve ball that will inevitably come.  Life, once again, is thrown off kilter for our family. There are no firm answers and there are usually many questions that outweigh the reality of true answers. It is at that juncture where you go down swinging or you give it all you got and safely reach the bag.

So here I find myself, again. Who would have thought that during our (nearly) 15 years of marriage three of our children would find AI Dupont Children's hospital a temporary "home".  Seemingly we are on a 6 year interval of visits that require a visit to the PICU.  Thankfully the hospital has been redesigned and it doesn't look the same from our prior admissions. The change of scenery helped the girls and, in all honesty, Allan and me.  Yet, it's not enough to shake the weight that there were two special people in our family that died in this facility. Not to have to walk down the same hallowed halls was a gift for all of us- even our family and friends who, I'm sure, are getting pretty tired of ramping up the prayer chains, storming the gates and supplying me with coffee.  I know I'm tired of asking for that support.  The cynic in me thinks "well, at least in the next six year cycle the Bugs will be 15 and nearly 18 so we won't have be legally responsible much longer if we don't want to cope with it anymore." Probably not my most brilliant in my parenting coping skills. 

Life is full of choices, perspective, and cheap quippy advice on how to navigate the day to day quagmire of crap.  I  get tired of the hackneyed Christian responses "let go and let God", "He knows", "He is there and has this all planned out", etc etc Amen.  While I can not deny the deeply seated truths in these kinds of remarks, they still fall short in conveying the depth of understanding, trust and faith that it takes to get to be able to simultaneously rest in their wisdom and feel the emptiness that there are no "answers this side of Heaven".

So where do we go when words can't provide the answers and you know that God holds the answers you seek? Where do we search when we know the answers are not to be found and your heart is crying, "I've been intentionally hit by another pitch!" ? Well, I just do not have the answer. I find that to be anti-climatic, don't you?

When Emily was showing signs that something was up,  I had to go on this journey of self talk and parental scrutiny. I was watching her like a hawk and not wanting to believe that there was something "wrong". I consulted my posse of people to no avail. Honestly, I just wanted someone to tell me what to do. I wanted someone to say, "This is the way walk in it." I was not ready to relinquish all of my fears, concerns, field research and Google searches to God.  I grabbed a cup of coffee and some quiet time and begged that He would blaze our trail. He would protect our child and He would provide for her needs. 

This weekend, when the name "diabetes" had not yet entered our lives with the force that "mitochondrial" did so long ago, we prayed as a family for Emily. I don't know about you, but when I close my eyes to pray all I see is dark. That morning at the breakfast table the dam I saw was in the form of a tunnel and there was a pinprick hole at the end with a bright light. I actually had to cover my eyes with my hands to make sure they were still closed. "Amens" were said and breakfast was served. I downed my coffee as the knot in my stomach grew. I busied myself with the day and tried to steal time with each of the Bugs not in question to hear their thoughts, feelings and concerns. It wasn't until a car ride that I remembered my experience while praying. Put on the field research hat and polled the posse. Yup. Everyone else in my sample set only saw dark when praying. I went with it and decided that there was a visible light at the end of this unexpected tunnel. We dove in head first and took Emily to the place we all fear the most, because it would be the best place for HER.

The whimper she made when we pulled on to the campus and she saw that tower that has been breaking her heart since the day her sister died. I clutched my cup of coffee and told God that I am not a fan of our current situation. She bravely walked into that ED. She did all she was supposed to do. I tried to mentally check my attitude at the door with the years of mistrust and memories of bad treatment from past experiences. After a separate, private and short go around with the ED Resident (who was really pretty awesome) I made it clear that this is not mitochondrial,  and that I thought we should start with  a urine and a glucose check. I said, "I think it's diabetes." Not too long thereafter with a prick of a finger, my daughter was diagnosed. Just. Like. That. Allan was the first to recognize that we came in and got a diagnosis. Hallelujah. I am so tired of advocating and fighting for our kids in this place. There is great comfort and peace in a disease managed by a well researched order set.

Stuffing down the feelings of "this is not fair", "why her", "are you freaking serious, God," and "can't we just live a normal life", I tried to focus on my daughter with critical labs that are correct able. These thoughts seep out of my wet eyes. We focused on getting all Bugs on the same page, walking through the process and letting out all the feelings that were and still are being felt. They were catapulted into a myriad of memories they have yet to understand. When they put the pule ox on Emmy's finger, without explanation, as they whisked her to the PICU I watched my daughter begin to unravel. I did too. The one thing that my girls still talk about was how Ava's toe glowed with the pulse ox monitor.  It was just too much to bear. In that moment God mad His presence known and instead of crumbling, we followed Emmy to the place we never wanted to go (again).

There is so much to learn and our lives have just changed in the blink of an eye. I could easily get lost  in the words and the emotions and the questions. But they have no answers. They serve a purpose to help deal with the enormity of our current circumstance. But they do not explain the why's. The employees here are at the ready to help us understand "why" and that is so great of them.  Yet I feel like it's a surreal process. I've been living, a long hard time, not knowing "why" and accepting that they"why" is  not important. I could become so cynical right now. The coffee sucks, I can't leave the floor, I'm tired and I don't want my daughter to have diabetes. But there is no purpose in that. Of course it will happen, and it needs to, I just can't live like that. 

I realize that I spend a lot of time searching for the "how" now. What are the nuts and bolts of this diagnosis, how do I relinquish my child to the medical world of labs, injections, appointments and lack of control? How do I face this process I've so desperately tried to avoid? How do I help all my children understand and not to be scared? How do I know the right thing to do? How the hell do I know how many carbs I put in all the recipes I make up on the fly? How do we still do all that we do? How do we pay for all of this? How will I get through the day with no sleep? How will I know the way?

I will pad down the hall to the crappy coffee machine (which is WAY better than 6 years ago) get my earthly sustenance and I will Be Still and Know that He is Lord. He is the way the truth and the light and He will wipe all the tears I'm so tired of shedding. He will show me the way that I am to walk. He will teach me how to love and care for my Bugs and my Allan. He will point the direction for all the financial details and decisions.  When we are thrown those curve balls and want to know all the details, all we really need to do is grab some coffee (really because it's just so yummy) and tell God that you are done and can't do "it" anymore.  I see that He is helping my sweet sweet twirly girl, I know He's carrying all of us. That is enough "why" I need.