Many of our friends and followers on other social media regularly tell us how they live vicariously through us, as we try to be fairly active. Many of our posts are getting outside and being active but there is another side to our life that people do not see. One of the children suffers from Dravet syndrome with developmental and physical issues related to this crippling form of epilepsy. One of our goals with this blog was to show others with special needs children that you can get outside and continue to live life.
Getting outside is just as important to Charlotte as it is to us. She craves sensory stimulation and will look up in wonder as planes fly past, snow flakes fall from the sky or stopping on a hike to touch the bark of a tree. We all try to get out together and will carry her to the crags, bicycle rides or just being out to dinner and being a normal family.
Max and Chase recently traveled to Mexico and returned feeling a bit sick. We are not sure if Charlotte was affected by what the kids brought back, the full moon or her changing body. Talk to any special needs family and they can tell you how these factors affect the disease their children suffer from. Our weather was also changing and extreme changes in weather can also set Charlotte back for a few days. Unfortunately this downturn in Charlotte lasted almost a week.
This is longest time she has decompensated for. Usually she will have a occasional seizure at bedtime as she falls asleep but throughout this week there were several seizures during the day and throughout the night. Days were spent holding her on the couch or anywhere we could to keep her comfortable and feeling loved. The other issue is that she will barely eat or drink during these moments. These are the days when you feel utterly hopeless. Seeing a defenseless child seizing and turning blue, while all you can do is hold her and hope this isn’t the status seizure that will end her life. She is 10 and will be experiencing puberty soon. Changes in health and hormones stress Dravet kids and these stresses on their bodies may send them into the status seizure that ends their life.
Shortly after the nap on the hammock she popped awake and started talking in her happy sing song way “mommy, poppy, baaaabbbbiieee”. This is life with Charlotte, one moment you are drawn into her big blue eyes and love and the for some inexplicable reason you are wringing your hands trying to figure out what is making her worse. Somedays our goal is outside and other days our goal is inside and ensuring Charlotte is taken care of. Either way this is our life together. Some days are fun, some hard but they are all rewarding!