I have been trying very hard to reframe in my mind Charlotte's death - in that it is not a loss for her, but a gain, she is free. I say this over and over and over each and every day in an effort to change the pattern that my neurons have made saying "she is gone, she is gone, she is gone". It is a hard balance because the truth is she is gone, and there is not a single thing in this world that can change that. It shakes me to my core, I can feel it in the very depths of my chest cavity what I can only imagine is my soul, I want nothing more for this to be different, for her NOT to be gone. But then she wouldn't be free. How can I not want her to be free? How can I want to wish her back for my own personal sufferings, back from a place that I can only imagine surrounds her and fills her with the very definition of Joy. Her freedom comes at a price, the people left behind must carry the suffering. When you say you would do anything for your child, when you would do anything to offer them relief from their disease, you would travel the ends of the Earth to find a cure, live in a box so they would be better, that includes bearing the suffering of the loss of their presence so they can be free.
My therapist has told me that along with her freedom comes my freedom, our freedom. Our lives were defined by SCN2a, and seizures, and hospitalizations. We lived on the fly, we never planned two far into the future - or if we did I never got my hopes to high it would happen. There were many, many times plans would be canceled, or altered, or I would have to rush home because she wasn't doing well, or it was time to go in to the hospital for yet another stay. Her stays were rarely short - which required rearranging life, shoveling Sophie around, and many a days where I would walk downstairs, or upstairs when we were in the PICU to work a shift, and then go back to her room to sleep. Our nights were never predictable, her meds went until two in the morning and started again at six in the morning - you were never guaranteed a full four hour sleep - in fact it rarely happened, the pulse oximeter would often go off - sometimes real, sometimes false, or her cpap alarm would go off and you would shuffle out of bed to assess the situation. Until the last couple of months when we got nursing back at night, it was like having a newborn in the house, only it was never ending for two and a half years.
So technically yes we are free from all of that, but I am not ready to be free if I am being honest, I don't want freedom. I had learned to live on short notice, in fight or flight, how to be organized in chaos, to function through exhaustion. I would be lying if I would say I didn't miss it, not because I enjoyed the chaos, but because it meant that she was here. I would give up my freedom for her life. Some may say not looking at the freedom being offered to us is an unhealthy mindset, a place of being stuck in my grief, and I guess in some sense it is true. But I am not there, I don't want this freedom. This freedom hurts to my inner soul, it makes it hard to breath sometimes, it forces tears in my eyes when I least expect it, it has spiraled me into a place I am unfamiliar with and am not the greatest at.
Charlotte's freedom has made me lose site who I am. I am not the person I was before she was born - that naivety went out the door the second she didn't start breathing when she was born. I somehow thought rare was so rare that I was immune to it, and that my friends is a lie I tricked myself into believing. Rare is rare, and only happens to a small percentage of people, but it only really matters to you when it happens to you. I am not the same person I was when she was alive - then I was able to keep it together, I was able to research, find answers come up with solutions, advocate, assess, all while being her mother, and loving both her and Sophie as much as she could. I spent every day problem solving, trying to tie symptoms together, coordinating appointments so that we spent the least amount of time traveling and the most amount of time having fun, administering medications, shuffling Sophie to activities and school, doing treatments, making decisions, filling out paper work, after paper work, after paper work, fighting to get from the state what she deserved (but ultimately didn't get - a story for another day), looking for supplies not covered by insurance because she was two young but still needed (which by the way did you know you can get chux for dogs at Target for $10, but if they are for people they charge over $50 - such a disgrace).
Now I sit in a silent house. Yes a silent house. The only beeps and alarms I hear are in my head, and wonder who it is that I am supposed to be. It is crazy that it only takes two and half years to lose sight of who you are but it is a fact, I will never be the person I was before her, I will never be the person I was when she was alive, and I am forever changed from her leaving, which leaves me grasping at clues as to who I am supposed to be. In one sense it is an opportunity, a clean slate, a time when I am mature enough and know enough about life to make decisions to define myself and who I am and what I believe and stand for, but it is a curse as well when all you really want to do is turn back the clock, to have more time.
It may or may not sound like it but I have actually been working really hard on my grief. The reality is when you are working really hard on it, it actually is more apparent and may seem more present to the people around you to the world. It means I cry, sometimes I have no idea why, sometimes it is in the middle of Target because I see an outfit I would have bought from her, a lot of times it is when Sophie tells me she misses Charlotte. It means I may seem reclusive, and in hiding, but in reality, that means I just don't have the energy to face the world and walk outside the safety of my home. It means I get angry at things going on in the world, because of the disrespect for life, sometimes I even get angry in the store when parents lose patience with their children (and yes I am guilty of doing the same), but at that moment, I wish that they could see what a blessing it is to have their children running around the isles giggling and not listening. It means I get jealous - yes jealous - I hate to even admit it, and I know everyone's life isn't as perfect as it seems we all have the crosses to bear, but I get jealous of normal, of those that don't have to bear the cross of the pain of losing a child. I am jealous of disease that have cures, or have medications that manage - Charlotte didn't have either. I am jealous of kids who are sick but have the ability to communicate, have the ability to laugh despite their pain, to play...sometimes Charlotte would smile, but much of her life was in reality spent in a state of seizing or sleeping from medications to stop seizures. It means that some of my best days are when I find things in my house that were Charlotte's, or touched Charlotte - pulse ox wrappers, medicine caps, when I open a bag and there is a bag of labeled medications - some of the most heartbreaking but peaceful things in my heart. It means that Sophie sees me cry - I don't hide it from her, she sees it and knows it is an ok emotion to have. My point is that it means I am different from who I once was.
Someday I hope that it has made me into a better person, a different, but better person. I am learning many things about myself that some I never knew, some I had an idea about but it is becoming much clear:
1. I don't mind being alone - sometimes it is refreshing to be alone for a little while, to be alone with my thoughts or even without thoughts.
2. I am not always a social person, I lose energy by planning things every night. I like to be around people, and doing fun things, but I get anxiety if every single day of my week is planned.
3. I tend to over extend myself at the cost of my sanity - so if I say I am not able know it is not because of you it because I am working on protecting myself. I have for 36 years done anything and everything for everyone in the world except myself. Sometimes to the point where I don't know how I am going to get to all the places I have said I would be in one day. I am working very hard to try and fit myself into some of my plans so I have a balance of doing for others like I love but also doing for myself.
4. I can subconsciously remove myself from the situation and talk about Charlotte's death like it didn't happen to me - so it may seem like it is nothing to me, but in reality I am dying inside, this doesn't mean I don't want to talk about her or it.
5. I don't ever want to stop talking about Charlotte, and I hope you don't ever want to stop talking about her either. I hope that you are not scared to bring her up - I know it may be awkward, or it may make you nervous, but I love talking about her, it makes her feel alive in my heart. She will always be my daughter, and I will always be her mother she will ALWAYS be apart of our family even though she is present in the flesh.
6. I haven't returned to work yet - yes for some that may seem weird - the reality is that I work in the same hospital she died in. Can you imagine walking back into the hospital where your child died and then administering care to children in life and death situations. The rooms I work in are laid out the same, the beeps are the same, the alarms are the same, and the people are same...and I am scared. My anxiety is a reality and that causes fear in me. I have to make sure that I am in a right mind that I can give the care that my patients deserve. I know I am in a position to make a huge difference from a different perspective, but I have to be able to be a good nurse first and foremost. Not to worry dear friends and co-workers, I AM coming back, it just hasn't been as soon as the old me would have liked. It is my number one goal right now.
7. I have great plans for this world, and continuing Charlotte's legacy. I pray that her foundation will became a huge part of who I am, it gives me hope, it gives me peace, and it keeps Charlotte alive for me. Above all, I have and always will love doing things for others, this gives me an avenue to both keep Charlotte alive and do things for others. I hope this will be my life source.
The rest is unwritten, uncertain, and unclear. If you were to ask me I would say I have no idea who I am, I am just trying to make it through today - and that is the truth. Breaking off too big of chunks of time takes too much energy, and makes me forget to live in the moment. So right now I am living in the today - hoping that a whole string of todays will help define who I am supposed to be. I thank those who have stood by me and supported me and continue to support me at my best, and at my worst moments - those people continue to love Charlotte, and love me and my family - and they are helping me carve my path in this world. It may seem that this story is one of grief because I am in the thick of it, but I assure you it is one that is of Joy and will end in Joy, because that is what Charlotte has made it. No great reward comes without a price, a struggle, and work. Grief is all of these things and more. Grief never has an end point but I am confident that with the help of my angels above, they will help guide me on the right path, and someday I will be able to sit before you and confidently tell you who I am and what I have done with my freedom - and it will all be enclosed in Joy.
Today marks six months since Charlotte became free. In some ways it feels harder than the other monthly dates. It feels as though the initial fog has lifted and the raw pain is sitting there waiting for me. I have relived over and over today her last day, the last minutes. I remember silly things, but things that gave me peace. I remember my head laying close to her face feeling her breath sweep across me, soaking it up memorizing the paths it took as it rushed over my face like a wave. I remember feeling the warmth of her blood circulating her body pushed up against mine, her roses cheeks, her long eyelashes, her grip on my fingers. I remember telling her it was ok to go, giving her permission, telling her to be free. I remember our priest confirming her with the holy spirt, and the flash of light I saw with my eyes closed as he confirmed her just an hour before she passed. And I remember the faces of the staff we loved so dearly surrounding us in her last moments as she took her last breath assuring me she wasn't in pain. You come into this life in an instant, and you leave in an instant, it is that fast for most. She was lucky enough to have the two people who loved her most on this Earth to be present at both the beginning and the end, although I have been doing a lot of reading and some of the people who have experienced near death experiences describe that they had no fear - that the fear we have is human and is fear of the unknown. It is comforting to know she was surrounded in the greatest amount of love that could be offered on Earth, she was not afraid, and as she was accepted into Heaven to an even greater amount of love than can be felt on Earth.
Six months free...and sometimes I feel more lost than I have ever before. Some days I wish I could give this life away, this cross I bear, but that would mean I wouldn't have gotten to love you amazing little girl, and there is nothing worth trading for that....each and every hard day, tear that falls, and pain I feel is worth it for a minute to love you. And remember this does not end in pain and sadness consuming me, this journey that I am on, it most certainly ends in Joy. The freedom that now is filled with tears and heartache, will become a freedom that is filled with Joy. It may take days or years, but it will end in Joy.
Six months free, six months free, six months free for you my love Charlotte.