Purple Bear

For any friends and family keeping up with Charlotte, you probably noticed I have went through a few name changes on my blog here lately. I think I have finally settled on the perfect name, “Purple Bear”.

I never intended on keeping the blog up past Charlotte’s birth. I had no need to. The purpose of the blog was to keep mine and Case’s distant family in the loop with my pregnancy and Charlotte’s birth. Our blog was never intended to document our diagnosis or medical adventures. Those things happen to other people, not us. 

Charlotte’s 1^st seizure was on Dec. 29^th. I was home alone with her when it happened. I was an ignorant 1^st time mom, and I didn’t want to be that mom that freaked out every time my kid ate dirt. Since Charlotte began acting normal after about 2 minutes of being very VERY stiff and still, I wrote it off. I did take some photos of her face and sent them to Case, “hey does this look funny to you, she is acting weird”.  She was 5months old. 

Charlotte had some big milestone come right after that 1^st unknown seizure. She got 2 teeth, she began pushing her chest up 90 degres from the ground and attempting to combat crawl. We had our 6mo doctor’s visit coming up, this was big stuff to report to our doctor. I was so excited to tell him how amazing my daughter was, I totally forgot to mention “that time she acted funny”. We had no clue Charlotte had any types of Epilepsy. We had no clue she had a genetic mutation and we knew NOTHING about pediatric hospital stays or what an Epileptologist was. We had no clue our child was going to have some special needs. 

Feb 2013 was Case’s  1^st Valentine ’s Day to attempt a prize for his little girl. Charlotte was still to little to really understand, but I was super excited. I couldn’t wait to see what love, care, and thought he would put into a loving prize for our baby girl. Charlotte LOVES balloons, so I just KNEW Case was going to come home with a big bunch of balloons for Charlotte to oogle over. I had “my” heart so set on balloons for Charlotte, that when Case came home carrying a bear, I was a little disappointed. When he walked in the door holding the bear for Charlotte and roses for me, I kept looking around. Surly he bought some balloons, Case KNOWS she loves balloons and besides Charlotte isn’t old enough to form attachments to objects. No balloons. Despite no balloons, I was thrilled that he thought of us. The bear was cute. It was purple holding a pillow heart that said “Love”. Charlotte liked the bear, but as I mentioned earlier, she was still too young to really form any attachments to objects. As quickly as she examined the bear, she threw it down. She was more interested in running  around in her walker. 

2 weeks later Charlotte would have her 1^st generalized seizure that she wouldn’t come out of on her own. She seized for about 25 minutes. She was given multiple doses of Valium and Ativan before it stopped. From this point on we kept our over night bags packed. The seizures were so frequent, we kept luggage with the overnight essentials to grab and go, when the next event happened. We lived in a state of heightened alertness just waiting on the next seizure. Is it now,….what about now…..or maybe….. NOW…..ok well maybe in the next 5 minutes…….or it could be RIGHT NOW and we don’t know it. We didn’t know what to do and felt helpless. After the 1^st hospital stay with a baby, we became pros at packing a diaper, food (you can’t rely on the hospital to bring you milk or food in a reasonable time when the baby is crying), and toys. Charlotte didn’t have a ton of stuffed animals, so her Purple Valentine’s day bear always made the cut into the bag. Stuffed animals pack easy. ANYTHING to help pass the long days and nights confined to a hospital room. That purple bear has followed us across multiple states, and has been hugged through multiple blood draws and needle sticks. Charlotte has cried into purple bear, hugged purple bear and chewed on his nose so much that it is torn to shreds. Much later we would realize that purple is the awareness color for Epilepsy. Case and I often feel helpless to Charlotte’s seizures. We are both problem solvers, and not having the ability to help or cure Charlotte is really hard on the both of us. We want to actively “DO” something but we can’t. We can’t stop the seizures and when they happen, we just have to hold her, comfort her, and love her. Love is the only thing we can do for Charlotte. The purple bear’s arms are bound to a pillow with the word “love” stitched on it. Our love is often the only thing we can give her, and what binds us together and comforts us when we have nothing else. Our love for one another helps us to keep from allowing Epilepsy to rip us apart. Without love holding us all together, we have nothing.  1 Corinthians. 

When I was debating on the name change of the blog, I wanted something that reflected the crazy journey that we have been on this past year. Nothing was really striking me as significant. I then remembered Charlotte’s favorite bear that she sleeps with every night, Purple Bear. Little did we know that Valentines day before, the seizures really gained some speed, that Charlotte would form such a strong attachment to this bear. Little did we know all of the amazing little significant symbols this bear would come to mean to us. I find it interesting  that out of all of the stuffed animals (you get quite the collection going once you have been to the Ped. Hospital a few times! Hahah)that  Charlotte has, she chose to form her attachment to purple bear. All of her other animals are about the same size, and most of them more cuddly; but she chose that one. She cuddles it at night before drifting off to sleep, and HAS to carry purple bear by his ears every morning to the breakfast table. She loves her purple bear.

That purple bear holds so many meanings to Charlotte and for our family, I thought it would make the best title for our journey though Charlotte’s diagnosis. 

Hoped you enjoyed my rambling thoughts. :)