I realize that I have been neglecting and silent with you all following our whirlwind marathon campaign (partially because I couldn't get out of bed for almost a week following) but also because just over a week after completely that major Joy we took on the enormous task of traveling as a family to Hawaii to check off several other major Joys for Charlotte, and most importantly to spend some much needed time together as a family. We are beyond grateful for the amount of love and support we had for the marathon, and to all those who helped make everything possible - especially the amazing organization My Team Triumph who without their efforts and support, this Joy would not have been a possibility. Another huge thank you to those who bought shirts, donated money, and cheered us on from near and far. I don't have an official number yet but I believe that with the combinations of the donations, and the two shirt boosters we raised nearly $9000.00 for The FamilieSCN2a Foundation! Wow! Simply amazing! An enormous thank you to those who helped get our story out in the media, who helped share Charlotte, and who helped raise awareness about the rare genetic mutation SCN2A. This perhaps is even more of a success than the funds raised, awareness is the foundation of any major project that grows and spreads. I will be working to make a link to the media coverage on here in case you missed any of it. Thank you to those who ran the marathon with us - all who had busy lives, other things they could have been doing, bodies that didn't want to cooperate - your support helped me at least keep motivated, and also surrounded Charlotte with even more love on her special day. Thank you to David Plummer who out of the graciousness of his heart offered to meet Charlotte at the finish line so she could meet someone famous, and not only that but let her wear one of his medals. I am honored that my little hero inspired someone enough to take time away from his day to share Charlotte's special day with her. Thank you to my friends who supported me in my endeavor to run the marathon - when I didn't think I could do it, and even when they may have thought it was a difficult feat themselves. I any doubters now are official believers I can and will do something I am determined to do.
And the largest thank you honestly goes to my sister. She was my running partner, my biggest pusher, she encouraged me she forced me to train when I didn't, she brushed off my bad runs, and she believed in me until the end. And then the day before the marathon she got sick. My amazing sister ran the entire marathon by my side sucking on cough drops and taking dayquil, never once complaining - only encouraging me, forcing me to stay on the course, and literally dragging me across the finish line the last few yards. There is no possible way I would have finished that race without her.
Hawaii was amazing, it was perfect, it was better than I could have ever imagined. Sophie and Charlotte got to fly on a plane, swim in the ocean, play in the sand, drive to Hana, go to a luau but most importantly we got to be together as a family and feel as normal as we probably ever will. I get tears in my eyes thinking about what an amazing trip it was and wish with all my heart we could be back on the warm sunny beach, listening to the waves crashing into the coast, and watching the kids run and giggle in the sand.
Instead we are here...the hospital...again. We have been here for a little over a week. We arrived in our seventh ambulance ride due to respiratory distress and requiring 19L of oxygen (well over the 2L) we are allowed to do by pulmonary before calling them. In situations like these, the little things are the things that mean the most to the parents and we were so honored to have the ambulance escorted by a sheriff who has been at our home several times before, in order that we have a more clear path to the hospital followed by a huge hug for this sad momma after we arrived at the ambulance bay. I asked the ambulance crew how often this type of escort happens fearing something more was going on, and their response was "never, he must have been here before, and must really care about Charlotte." there again are no words, at the honor I feel that Charlotte is treated with such an honor.
And this is where the words of my heart have been lost, or perhaps jumbled inside, and I have not been able to place them out for the world to see. Upon return from Hawaii, I have had an unexplainable pit or heaviness in my stomach that has been unexplainable always there. At first it could be explained away by post vacation let down, but the feeling just has never left my stomach.
The truth of the matter is that even before the Hawaii and the marathon Charlotte has not been well. Her seizures have not been under control for a while. We have been in a cycle of a day where she seizes tonic clonic for hours requiring oodles of rescue meds, reloading of phosphyntoin, only to repeat in two to three days. The seizures unfortunately have not been the ones that don't bother her, most of the time with the bigger ones she needs oxygen support because she drops very low. These are seizures that are not only dangerous but scary as well I think our focus was so much on getting through the marathon and on getting to Hawaii that we choose not to think about the significance of what the seizures being out of control meant.
Then you through in the onset of respiratory season that thankfully with many prayers started later this year than last. True to form Charlotte caught the first round of respiratory illness even with our careful precautions. She faced incredibly high fevers for many days, and we tried as hard as we possibly could to keep her home - this involved every four hour vest treatments, nebs, and cough assist 24 hours a day, and in the end it just was not enough and we could not sustain her at home. We are currently fighting parainfluenza, pneumonia, and I just received word this morning that her sputum was growing something out but I cannot remember what - so we are on three different antibiotics. She has a functional ileus for a while and was not tolerating food at all, and of course the seizures are out of control - which is actually abnormal for her when she is sick. She typically quiets down when she is sick.
My heart is heavy and sad for her on so many levels, and that is where I for once am at a lose for words. We had a care conference last week and there are numerous concerns for Charlotte some we knew about, some are new for her. Of course there is the ongoing susceptibility to illness, and the lack of seizure control despite the addition of new medications and the increasing of certain medications she is already on. Rescue medications are not really working at all, but we do them to make ourselves feel like we are doing something to help her. There is concern about her body having very low temperatures sporadically, and there is concern about her breathing - specifically she is not initiating breaths as much as she should be (you can tell this from the machine) both of these things could be indicators that her brain stem which is the central control for your bodies life, could be starting to be affected by all the seizures. The fear of the medical team is that her specific type of mutation is showing signs of progression to which there is no way to stop.
I am sad on so many levels that I cannot even begin to put into words right now, but I can say I miss her smile - I cannot remember when the last time I saw her smile, I miss her coo-ing noises when we bounce her and swing her, I miss her bright eyes, I miss longer periods between seizures (hours instead of minutes), I miss her - the Charlotte that is locked in, prisoner of the horrid seizures.
Life has a funny way especially with all the social media to make us wish for our lives to be different from what ours are, makes us want things that others have, and makes us forget how lucky we actually are. Many times we focus on all the things wrong with our life, or the things that we don't have when in reality what have in front of us is pretty darn amazing. And so while this Thanksgiving I am saddened that we are here in the hospital for the third year in a row, that my daughter is lost somewhere inside her self because of seizures that are relentless, I am thankful for the present, I am thankful for the warmth of her baby soft skin, for the smell of her hair that curls from the sweat of her bipap mask, I am thankful for her little hand clenching mine even if it is the natural position her hand goes into, I am thankful I get to stare at her beautiful long eyelashes all day if I want to, I am thankful for the love her sister showers her with, the unconditional, never-ending bond that connects there hearts in communication without words. I am thankful for the here and the now, I do not wish for any minute to be different from what it is and at the same time accept that each minute in our lives is exactly how it was meant to be. I am thankful I feel sadness because in order to feel sadness I must also feel love, and the love outweighs the sadness a hundred times. I am thankful for today, I am thankful for the now, I am thankful for the present, because you never know tomorrow you may be wishing for it to be like today.