My dearest, precious, perfect Charlotte. If I close my eyes and imagine hard enough sometimes I can still fill my nose with brief glimpses of your smell. I can remember the softness of your skin as I rubbed the curves of your face, and the palms of your feet. I can feel the tangles of curls as I run through them with my fingers, soft as silk. I spent many hours while holding you trying to memorize every inch of your precious body, the weight, the warmth, the curl of your snuggle, your warm breath brush across my shoulder as you snuggle in on my shoulder. I can if I work really hard, remember these precious feelings for a moment in time, because every time I held you I tried to memorize every inch of your precious body, to savor it, to commit it to my brain so that it was mine forever to hold.
I remember your yawns - and Sophie does too, she often talks about them and reminds me of the cute sound you made when you yawned. This vocalization was music to our years, because to our knowledge it was just you being you, and not you being tormented by a seizure. I remember when you were younger and you would coo when we put you in the super vibrating chair (that got terrible reviews because of the strength of vibration), but that is just how you were - you loved things that were different, that were outside the box, that were creative...I loved that about you.
I loved how hard you worked, even on your worst days, you always put forth the best you could do with every single therapy, every single time (although I secretly think your favorite was your vision therapy) you sure loved the light box we used, and nothing made me prouder than when we got you to change the colors with a switch. I loved when you were awake when you were present in the day, but honestly some of my favorite memories are when you went to sleep for the night and you snuggled into my curves, your body relaxed, and before it got really bad, you got a break from seizure frequency. I loved watching you sleep, your eyelashes softly flutter and I imagined your brain being allowed to be free during these times, to dream, to imagine, to be at peace.
The hospitalizations were horrible, with many bad memories, but I am forever grateful for the extra one on one time I got with you there, the snuggles with undivided attention, the opportunity for it to be just "me and you". A luxury not many moms get when they have more than one child, and despite the circumstances, I considered it a blessing in disguise and my light in the darkness.
Sometimes I forget how good it was in the beginning, at the time it didn't feel very good, but when I look at pictures I realize how good it was and had no idea how bad it could be. What I want most for you is to tell how very much I love you. I love you to my inner core of my soul, so deep I can feel it on the inside of my chest. I would give anything to hold you one more minute, one more second, to feel these memories, the warmth of your body, the fullness of your soul. I know this is impossible, that it can never be until I enter my Heavenly home, and I also know your body is now whole, free, you are free, you are not in pain, you are free. And so, as your mom, I have done what every other mother would do for their child under any circumstances where their child is sick - I have been given the opportunity to take your pain from you so that you are in fact free, and alive in a way you could never be here. I do this for you Charlotte because I love you, more than you could every know, but I do hope that you could feel my love penetrating my soul into your soul the many times we snuggled for hours. I hope that your soul knows my love, our love for you and how empty we feel without you apart of our family.
On the eve of your third birthday my heart hurts deeper than I imagined. I think back to your birth the anticipation, the excitement, the fear. I remember the terror that ensued the days after as we struggled to find meaning and definition to what you were going through. I remember it vividly as if it was yesterday, but most importantly amongst the all the fear, I remember you dad proudly shouting across the room "Trace, its another girl" as the worked to revive you and get you intubated. He loves his girls, and he was thrilled to add another one to our precious family.
Your first birthday we went all out, we were thrilled you had survived to your first, a date we were warned you might not make it to. We celebrated with a huge circus party because you could see red, so it was the perfect theme. I sprayed little animals gold (much to grandpas disapproval inside in the winter months). No detail was left unturned and while we grieved for all the things that not happened in your life, the struggles you had, we relished in the blessing that you were alive and with us, and were continued to be filled with hope that we could make up the milestones.
Your second birthday we had already faced monthly and long hospitalizations, it seemed as though every important event or holiday meant a hospital stay
(except Christmas, you must have known how much I treasure Christmas). I was no surprise that you were in the hospital for your second birthday, and though it was heartbreaking, we had by this time learned that this was our way of life and we amended plans accordingly. Being in the hospital was no reason to not get glammed up and celebrate. We put many great parties in the rooms of Masonic Children's Hospital and you never looked more beautiful than you did that day on your second year of life, in your beautiful sequin dress, and of course a large bow. Again we celebrated and relished in the blessing of your life, that you were with us, that life flowed through your veins, however by now I had started to worry about the time you would have left with us. The slow decline had started, seizures were continuing to not be controlled and it was evident that other parts of your body were now being affected by your neurological status. The "we don't knows" and "we will have to wait and see's" were starting to become a reality. None-the-less we wasted no time on this and celebrated you - you who brought so much joy to our lives, we loved more than life.
And now, it is March 7th the eve of your birth on the 8th. Three years ago tonight I was in a hospital room getting an IV put in being offered my last meal of McDonalds because they had noticed many decelerations on my "1 hour" monitoring strip. I sent your dad home, and snuggled in for the night - the last night my body protected you in a way that I could not do when I didn't have you in my belly. I cannot help but let my mind wander to what last minute preparations I would be making for your party - would it have been a sparkle and gold party, a princess party, what would be wearing, what would the cake be. What presents would we have carefully wrapped for you to open with the help of Sophie in the morning.
My beautiful baby girl, my lovie, my Charlotte...what I wouldn't give to be preparing for your birthday with you in the next room, bipap machine running, feeding pump beeping, and meds to be given. But then...then I guess I would be stealing your freedom, stealing your peace, stealing your healing and all those things are something that I could not do for you here on Earth and are the ultimate birthday gift.
I love you Charlotte, I love you, I love you, I love you. My pain and tears are a testament of my pain they are plentiful, and every tear is a tear of love, a tear of emptiness I feel without you there, but mostly a tear of love. I would have given my life to give you these freedoms here on Earth, but God has other plans for you, and plans for us, and ultimately never was in my control, His plan is how it should be, and my suffering is cross that I bear for your freedom. I hope you know that I love you, and I hope when you were here you knew the same. I hope you know we never once gave up hope that there would be something out there that could help you, that something would change, and most of all we never gave up on you. We love you Charlotte always have, always will, yesterday, today and tomorrow too. We will be lighting a candle for you at 5:17 pm tomorrow (March 8th) the moment you came into this Earth and we invite others to join with us - we hope that you will see the flickers of flames up in Heaven and know how many people who love you, and how many lives you have changed. We love you Charlotte....and Happy 3rd birthday tomorrow!