a family's struggle and triumph

One night my sister read a blog to me that she had written about my niece Taci. I thought it was incredible and wanted to share it with others. Here it is.

September 24, 2008 - Wednesday
a daily miracle Current mood: grateful, sad, happy, concerned, relieved, heavy

my days are long and hard, emotionally and physically. it is a struggle to get up in the morning, a task to continue going all day, and a pain to rest at night. the endless chore that has become my daily life started 3 and a half years ago, when i found taci unconscious, lifeless, and colorless. 5 days later, when she awoke from what seemed like an endless sleep, i was not told anything positive. the highest hope i had at that moment, was that she was awake. they said that she had damaged the part of the brain that transported motor skills to the body. she could throw her limbs, chew, swallow, laugh and, most of all, scream. at that moment, i prepared myself to push her around for the rest of my life in a wheelchair with pink streamers. the only thing that gave me hope was her laugh. her cackle could be heard down the halls of primary childrens medical center.

3 weeks after the initial accident i left my husband for my grandma. i could not take care of my 2 children along with myself and a soulless man. he lost himself quickly, as did i, and together we could not function. my gramma and sister were the only people that would help me to handle my burden, and i am eternally grateful to them for the strength that they had when i was so weak.

that little girl could scream. that is all she could do to cope with her ordeal. she would scream and i would cry. i would cry and she would scream. the only comfort she had was being held, and as i would hold my beautiful, uncontrolled child, all i could do to cope was cry. i would medicate her so that she would sleep. during her 4 hour long medicated rest, i would try to rest. it was impossible to sleep, because in my own numbness, my thoughts would wander to the memories of a cheerful, robust being. my tears would stream endlessly.

we immediately started the most basic forms of physical and occupational therapy. we would strap her into torture devices to force her into a standing or sitting position. we would put toys just out of reach to entice her to reach for them. 2 months into this, she began to roll. she would throw her arm over her body, turning her into an invalid human pretzel. she would then throw the other arm out from under her body, successfully turning herself over. this jagged movement turned into rolling. when bragging to the neurologist that this was not a permanent lack of motor skills, he simply told me that her mri said she cant do that. i was not going to tell her that.

she slowly figured out how to throw her arms in a more deliberate manner, and then drag her goal to her. 6 months of pain, and she was off all medication. one week later, she began to situp on her own. shortly after that, i caught her army crawling down the hallway. then real crawling. picking up her own food. pulling herself to a stand. on a magnificent christmas night she stood on her own. walking while holding onto furniture. climbing onto furniture. she fell. alot. for some miraculous reason, she was not deterred. in fact, i believe her failures motivated greatness. when she started walking with a walker, we started talking about getting her her own and pimping it out. pink streamers, personalized plate, the works. her goals were yet again, bigger than mine. over 2 years after her initial injury, she began to walk without it. now she can run and jump and talk and play. she assists in dressing and undressing. she feeds herself without a terrible mess. she knows her alphabet and speaks in sentences. many of the words she speaks are still inaudible to the people that dont listen carefully, but she does speak in sentences. she even talks back. she follows simple directions and learns something new every day.

she is the only person that comes to mind when i think that life is difficult, and yet i dont think that she believes it is. she will still throw fits when she cannot communicate her feelings and wants and needs, but i know many adults who do not have (medical) brain damage who do the same.

as i got home today and lay on my couch, trying to unwind from my day, i listen to her and niki interacting while playing online. "this is fuzzy, can u say fuzzy?" "suzzy." "this is pandi, can u say pandi?" "tandi." this simple act drives me to tears, to realize that in my wallowing of self-pity, i really never realized that i have an incredible helping hand in teaching taci. my favorite picture of my babies is when taci was learning to walk on her own last august, and niki is holding her hand. while taci pushes niki pulls.

in these 3 and a half years, she has been accomplishing greater things than most people could imagine. all the while, i was hurt and fearful. i dreaded each and every day. i have been in darker places than i would ever want to recall. i still fall in to these dark places for short periods of time. i still have tendencies of morbid thoughts. all of this is a realization that the battle is neverending for us. for her. i will watch her struggle for years to come, and i still wonder if her mortal end would have been a better outcome. she is still in the begining of her journey, yet in her 4 and a half years, she has experienced more pain, suffering, and obstacles than any human i have met. she will be striving her whole life to succeed, which she will. i have and will watch her struggle, hurt, cry, and worse. i have forced her to endure pain. i have been the one sitting with her through tantrums. i have been the villain, with only the best of intentions. i make her cry. i have cried many times over with her because the sound of her pain pains me. i have forced her to learn independence. i have had to learn to dicipline her. i have been hit and kicked, and have to understand why.

at some point, she will be torn down by others. ignorant beings will not understand her obstacles. her future is uncertain. i dont know, nor does anyone for that matter, if she will be able to accomplish everything that she wants to. her progress is not sure. she may never fit in. she will most likely be made fun of, and i hope i am prepared enough to comfort her during all of her trials.

This is for those of you who want some hope. When no one gave us hope, Taci did. She defied the doctors and did exactly what she wanted. This shows that doctors don't know everything. It also shows what a single mom of a disabled child goes through. I will never truly comprehend the magnitude of emotions my sister goes through but this at least helps a little.