It is a beautiful and sunny Minnesota morning, I have enjoyed my morning cup of coffee as a family sitting outside, the warm sun beating on my face. I have crawled back into my bed, the chatter of Sophie dancing off the walls, asking impossible questions that only a five year old can ask, each answer leading to a new and profound question that causes me to pause and wonder why I have never asked this question myself. You know how important it is to know the distance from the outside of your nose to the inside holes of your skull don't you? All incredibly, joyfully, and painfully normal events to be taking place in a household, and yet within our walls it still feels murky and foreign.
As we go through life, the tasks we must accomplish, the mountains we must climb are rated in difficulty based on the previous mountains we have had to climb. When we are children, the hardest thing we have to think about is playing sports, additions for a play, or staying out of trouble under our parent's watchful eyes. As we move through the years and into college, my struggles included attempting to stay awake in the basement library study room, staying so late sometimes that we left our things behind only to sleep and return to the same textbooks including organic chemistry equations, or biological processes. At that time the I thought the world would end if I didn't pass the exam, and we gratefully celebrated after we survived another round of finals.
In our early married years, Junji and I faced the struggles of infertility. This put challenges on us both emotionally and financially. While we watched what felt the world exploding babies, love, and happiness, we saved every penny we could and faced several years of appointments, needles, medications, and surgeries. When Charlotte was born, we were faced with the challenge of a gravely ill child, where no cure or certainty of treatment existed. A life that was fragile, and had limitations, that we were given to protect and watch over. Still none of these things, these hills, these mountains are the hardest things you will have to do in life.
When life changed in September of 2015 and my dad unexpectedly moved into Heaven's arms, that felt like it was the hardest thing I would have to do. It still takes my breath away to think about the horrific phone call from his boss to me his emergency contact, to feel my heart racing as I raced over to his house simultaneously calling the police for a well check, and the suffocating dread when they told me his car was in the driveway but he wasn't answering, knowing that something was terribly wrong.
I could arguably say that the hardest thing I have had ever had to do was make a decision to let Charlotte be free - a decision that I have been terrified to share for fear of judgement, yet a decision that I know feel moved to be open about now, knowing that there are other people in this world that can acutely identify with having to make such decisions for their children that could benefit from knowing they aren't alone and that others too are forced to face these circumstances. On November 29th, 2016, Charlotte was gone long before the bipap was removed from her face. She had for three days seized for 10-14 hours straight. Her body no longer knew how to control her heart, her temperatures, or her breathing, she no longer responded to us in ways she used to in the past. The truth is that she was gone long before we decided to be merciful to her body and let her move on to freedom and peace. This decision, the decision of freedom for her is by far the most horrific decision I have ever had to make and it will torment me until the day I take my last breath. And yet because I know to the depths of my soul, that it was the right decision for her, that giving her freedom was the climax of our hope, and the unexpected and often unwanted answer to my prayers for healing of her precious body, it is not the hardest thing I have ever had to do.
The hardest thing I have ever had to do is to wake up the next day, and the next day, and the next day, and every day after that, to take breaths in and exhale them out, and to live. Living on after her death is not something I always embrace, it is sometimes forced, it sometimes means fake smiles, many times it means creating a large stone wall to contain the rushing river of emotions that will crush my entire body and soul should they be set free. But it is a choice, and it is the hardest thing I will ever have to face in this life - living on without my beloved Charlotte. Thankfully I am blessed with my beautiful and old soul Sophie, who not only loves me unconditionally, but offers me grace without even knowing it, and makes the challenge of choosing to live the only option available. And so with every ounce of my being, I am fighting through this horrific challenge, and I am living. I am living while part of me is gone, while part of me is mourning, while part of me is screaming for this to be a nightmare. I am living, I am choosing Joy, and I am living, and every once in a while, when I am forcing myself to live, I find myself laughing without trying, and smiling without force. And then I silently feel my soul smile, and I say a prayer of gratitude to my dad and Charlotte, my two perfect angels above, for continuing to nudge me into the only option I would ever choose, no matter what - to live, to experience, to embrace, and to choose Joy each and every second of the life that lays ahead of me.
Eight months ago Charlotte, right around now I imagine your hospital room was filled with angels ready to wisk you into freedom and healing. Charlotte - my love, I know you know I would have switched places with you if I could, if there was any other way I would have done it in a heart beat. Every morning when my eyes open you are the first think of and every night you are the last thing that graces my mind before I slip into sleep. I love you more than life - I always have, and always will. I am sorry from the depths of my soul that I couldn't save you. I am sorry that choosing life for you my love, meant setting you free into a life far greater than the life this Earth could give you. I am sorry my love I couldn't protect you from the pain and suffering of this world. I am sorry....I am sorry...I am sorry.