One of the hardest things for our family has been to adjust to is a "normal life" without constantly living in the fight or flight status, without appointments, medications, detours in plans, therapies, people in our house etc. Or maybe I should say that that has been one of the hardest things for me personally to accept and get used to. "Normal" feels empty, not the same, and foreign. Like I am doing something behind my parents backs as a teenager, yet at times I am able to reflect on the "new normal" and recognize the blessing in being able to soak up the moment instead of worrying about the upcoming hours, days, or week; however, it doesn't feel right, it doesn't feel "normal," we have grown accustomed to chaos, and functioned well in it. But then what really is "normal". I have talked before when Charlotte was born about the loss of a dream, the grieving the loss of a healthy child, and the ending to a fairytale that in reality doesn't exist for us or anyone for that matter. Our brains are conditioned by society that life is easy and a fairytale from a young age. But many of us know the reality and really the absurdity of that thought in hindsight. My fairytales started blowing up into dust long before Charlotte was born, yet I still lived in the surreal world in my brain that I had been through so much already that I was protected, so when Charlotte was gravely ill at birth my life crumbled. How really could this be? I picked myself up though and we faced life head on with what we were given and believed that this was always as it was supposed to be. And then she died.
We always knew that this was a possibility, but really had so much hope that if we worked hard enough, pushed her hard enough, and embraced life and living as best we could that maybe it wouldn't be us. I spent endless hours worrying about death and how it could possibly be for her, and that I wouldn't be there if it happened. I came up with scenarios in my head, strategies to put control on the situation, came up with endings to my new fairytale that really wasn't a fairytale at all in many ways, and kept my phone glued to my hip every second I was away from her. These probably surrounded my own fears of death and my own mortality, such an abstract concept to understand, and something that I have feared since a child. Despite all we did she died. She died....this wasn't supposed to be how it was. She was supposed to live, in my head, she was supposed to change the world while living, she was supposed to overcome this, we were supposed to fight until we found a medication that actually worked for her, a treatment, a cure. She was supposed to be hear when that happened. She was supposed to be apart of that. But she is not, and that is how this was always supposed to end. Our fairytale is other people's nightmare my own nightmare, but really it was all part of God's plan to begin with, and who am I to question God's perfect plan, and to think that she was somehow more special than the other millions of sick and suffering people in the world?
How can God's plan be so devastatingly painful for us, yet so radiantly beautiful for her? It is hard to accept that God's plan can hurt so much, that it can feel so dark, and lonely - that this could actually be the reality of our story our life, her life. I do in fact believe that it is though, that she lived the life she was supposed to live and she accomplished what she was supposed to do in physical presence in two and a half short years of life, without every speaking a word, and spending much of her life in the hospital. I am constantly reminded of the fragility of life, something we were acutely aware of while she was living, but something that I am guilty of forgetting when we aren't staring death in the face each and every day. Life really is precious, and fragile, and has no guarantees, which is why it is up to us to create our fairytales even in the face of nightmares. We are never once promised a full life - an arbitrary age we put on an appropriate age to die? It kind of feels ridiculous to think about it "I lived a full life if I live to 80 but not if I live to 79." Think about that for a second. Let it sink in. What defines a full life? Is it the years we add on each year, or is it what we spend doing with the years we are given? I believe it is what we spend doing and how we to choose to live our days that makes our life full. You could argue then that Charlotte lived a full life in her short years - she did things some 80 year olds have never done. She felt all the love that we could possibly give her - at least I hope she did. She lived a full life albeit short life. Yet despite believing and understanding this when facing "normal" head on, I don't want it - I want to crumple it up and give it back, I want to re-write the ending, I want to tell God that He got it wrong, that this is not His ending, that He messed up and our ending is different. Which directly contradicts my fundamental belief that this is the plan God made for her life and for ours, that this is exactly how it was supposed to be from the minute I was born, from the minute Junji was born, and from the minute Charlotte was born, and it feels shameful to think that I may somehow know more than God. We are not guaranteed a certain quantity of days of life, in fact we are not guaranteed life. That guarantee is already decided, and not in our control.
We are also never promised an easy life. No where ever have I seen or heard someone write or say that we are given a life without suffering without pain, and if you do experience suffering and pain once then you are done, you are off the hook for the rest of your lives. That is not how life works. I learned that long ago when I was sick as a teenager, when I had to spend months in the hospital, when I had to have surgeries, when I went ten years with an undiagnosed autoimmune disease that was both painful and damaging to my spine, a disease that was "impossible to have" because I had Ulcerative Colitis the other disease on that gene, I learned it when Junji and I couldn't get pregnant, while I watched babies being born around me, while I prayed endlessly that our time would come, that we would be parents, I would be a mom, I learned it when Charlotte was born - how could this happen to my child, my child we worked so hard to have, how could she be so devastatingly ill, I learned it when my dad died while Charlotte was in the ICU, MY dad, my anti-anxiety person, my calm, cool collected support in the storm, who calmed me down when I started to panic, my reminder that life isn't fair and it is all about how we handle our hurdles, and I learned it when Charlotte died, MY baby. My precious daughter. I was the one in the hospital bed with my dying child, the medical team surrounding me as I have done for so many, offering love and support, knowing there are no adequate words to ease a mothers pain of losing their child, feeling helpless yet humbled to be able to be there for the family in simple ways of comfort - how could this be me, me on the other side, how could this be our life, Charlotte's life? How could this be the ending? But it is. It is an ending for Charlotte's physical life that is the epitome of a mother's suffering. A pain that runs so deep it doesn't even have words to adequately describe it. We were never promised a life free from suffering.
It is however NOT the ending for us. A difficult and painful journey that we have been forced to embark. A journey that we have to embrace if we want to live our lives to the fullest. It is not a life without suffering - we carry that with us wherever we go, but we have a choice to make in our life. That is to live, or to die - figuratively speaking in the spiritual sense with Charlotte. A life with suffering I believe actually breads your spirit, it opens it up to possibilities that you never knew existed, a spirit within you that cannot exist unless you choose to live. You make choices you would never have made in the past - because ultimately we know more acutely than most that we, and that includes you could die tomorrow. So why not do that crazy thing you have always wanted to do. Why don't we stop worrying about what the world thinks, what society thinks? Why don't we embrace who we are, and embrace the beautiful life we have been given despite the suffering and pain woven intricately between life's greatest moments? Because it is hard. It is a hard choice to make. It is hard to find Joy when your heart feels empty - I know this first hand, and this goes against the very foundation of our mission. It is really, really hard. But Joy can be found in the normal, and that is when the ordinary becomes extraordinary. When you embrace that, the beauty of the life blossoms around you. It does not in anyway decrease the pain, the suffering, the loss, but you can see it despite the darkness you always see, and that is a source of light that keeps you living, keeps you getting out of bed every day, and keeps you breathing when that is all you can focus on.
This past weekend we spent the weekend with dear friends on our annual camping trip. A trip that last year at the same time was Charlotte's first camping experience checking off her Joy of camping, amongst other things. A trip that started with an incredibly, more than expected painfully, sad, yet beautiful memorial service that the hospital put on for families who have lost children at the hospital. A memorial I thought would be a breeze, I have gotten better at deciding when I want to deal with my feelings and can hold them off for a little bit sometimes so they aren't so public. This was not the case for the memorial service and I was not prepared in any way for the emotions that emerged. After which we headed to our campsite with our extra large tent we bought to accommodate Charlotte and all her medical equipment, a tent that had old medical wrappers still in it, and felt empty without the table and her tubs of medical stuff (but a tent that I found a piece of gold tinsel in Saturday morning that had ZERO reason to be there). It was hard to pack for such a trip. I had no idea how to pack for a healthy child, I was used to making lists, double checking medical equipment, medications etc. We arrived to the site and I got to sit. I got to sit and have conversation as an adult. I got to watch the kids play, watch Sophie play. My heart ached for Charlotte to be there, but I tried as hard as I could to embrace the normal moments we were having. I got to play with Sophie at the beach, my focus was on her 100% and not constantly looking back and worrying about Charlotte - it was an effort, and I needed to consciously tell myself to go and do it because my brain is conditioned to function differently, but when I did I felt Joy despite my missing Charlotte. I found Joy silently gazing at the stars, trying to remember the formations I learned in high school, wondering if Charlotte could see the beauty I was experiencing, wishing I could be pointing out stars to her and Sophie, but knowing that the beauty she is experiencing is far greater than I could even fathom.
My point is, what Charlotte's legacy has always been, that there is always Joy - even in the darkness, and you really do have to force yourself to sometimes to find it. When you do, that is when the ordinary moments, the ordinary things, the ordinary experiences become extraordinary. Joy makes all things simple and ordinary greater and extraordinary. This does not replace the darkness nor take away the pain, or acute grief we are still working through, which is hard for me to comprehend. I have been searching for Joy to take away that pain, to fill the hole and void, to make me feel alive again. Joy in reality is moments intermixed in life whether that life is a life of pain and sadness, or ordinarily boring. Joy is not an overarching experience that takes away these life moments. But Joy does change your perspective on life, it reminds you that there is hope, that there is happiness, that you are alive, and that life is precious, You and only you are in charge of making Joy present in your life by choosing to accept that it can co-exist with contradicting emotions, even on your worst days, and you have to make a choice to look for it, and when you find it take the time to feel it, to experience it, to breathe it into your soul. A life filled with Joy is a life fulfilled even with the mountains we must climb, the highs and the lows we have to experience, and for some with the pain and suffering - Joy fills in the gap between these moments and fills us with life, and helps us live life to the fullest by doing the things we have always wanted to do but have been to scared to do, by taking chances on things, but being true to yourself, and by taking the time to witness the Joy that appears in the ordinary moments. This erases the definition on the timeline of your life, and establishes a fulfilled life. If you make a conscious decision to find Joy each day you are living a life fulfilled and for you it doesn't matter when you die. It matters to the people that are left behind because we miss your physical presence, the impact that you had on our lives, but only you can be in charge of fulfilling your life, and living life to the fullest, and living it with Joy. And just like that Charlotte's two and half years don't seem so short in terms of living life to the fullest as best as she could.
This is hard work to make this conscious decision, and in my grief I many times am lost and fumbling just to make it through the day, but I don't want her fundamental message, her legacy of Joy to be lost because I am missing her physical presence. It is something that I have to work very hard at because when you lose a child part of you dies with them. It is something that some days I am not capable of right now, I do not find Joy on the hardest of hardest days, the days where my heart longs for her more than other days, but I am able to take that time that I need for myself, feel the feelings of grief, accept that it is ok to have those feelings, and wake up the next day ready to find Joy in a moment, a flower, a giggle from Sophie, or a TV show marathon with Junji.. If I can do it, you can do it too, I promise you! Much the same that you would have been able to embrace the life we have been given if it was yours. It is what you do when you love unconditionally, and know nothing but love for someone. That is the greatest Joy on this Earth love for another, and with that I am reminded of the love God has for me and how though I may feel alone, I am not alone in this journey, my suffering is felt and understood by the One who wrote our story, exactly how it was supposed to be, and it is up to me to listen for and follow the guidance of how it is supposed to continue.
And now for my shameless plug for our non-profit. We desperately want to help other families find Joy in their times of darkness and we need your help by attending our very first fundraiser on July 31st from 6-9pm at Fulton Taproom if you are able! There will be great food, good beer, bean bags weather permitting, raffle items, merchandise for sale, and several other fun things to do. This is a family friendly event so please bring your kids, YOU DO NOT NEED TO PAY FOR THEM just let us know how many you are bringing by clicking on the "email coordinator" button when you purchase your tickets. We will have kid friendly food, drinks, and activities for them. The funds raised will go towards creating Joy Bags for people who are facing illness or hospitalizations and will provide things that will help them feel more like a person than a patient, including sheets, blankets, nail polish, age appropriate toys, hair pretties for the girls etc. We will also want to in the future help to provide tools to help create simple ordinary Joys for families such as family art projects, picnic lunches, shaving cream baths, giant bubbles, anything you can imagine or that they have imagined for their child that may bring Joy to a child. We cannot do this without your help!! I am attaching the link to get your tickets below. Tickets are $30 in advance, and $35 at the door. We are also launching two apparel boosters. One with the traditional logo with new options in colors and styles, and one coming in the next couple of days with a twist on design I think you guys will love both of the options! We really hope to see you at the fundraiser, to have you apart of Charlotte's mission, to celebrate our non-profit status, and to overall just thank you for the love and support you have given us the past three years.
Charlotte's legacy of Joy is no ordinaryJoy, she has and always will be extraordinary and so will her legacy of Joy she left behind. We don't need or want our fairytale ending we imagined so long ago, because our story is playing out just as it is supposed to be, and I don't think we would have experienced true Joy in life had it been a different story...besides you never find out what happens after the fairytale ends....it probably isn't even a fairytale at all, just a made up ideal for perfection that we all have learned since an early age to be expected for our lives, and if we don't get it our lives are somehow less -than. I don't have to like how Charlotte's life story ended, but that doesn't mean I don't appreciate the lessons, the beauty of life, and the Joy that surround us that she taught me.