Ellie

Ellie was born late one Friday night in March 1999 after an uncomplicated pregnancy and easy delivery (God bless the person that invented the epidural). My husband and I had never felt such joy. She was perfect. She was my first child and I was totally unprepared for the overwhelming feelings of unconditional love and protectiveness. My heart was ready to burst. I stayed up all night cradling her in my arms and in the morning I was ready to go home and start our life together. Every day for the next 3 months I wanted time to stand still so I could be with her forever and not miss a minute. Then in July 1999 our lives were turned upside down, and they will never be the same. I don’t want to dwell on the details, the pain and the heartache of that horrible week in the hospital after her first seizure. The worst days of our lives. Actually, the worst day was when we came home and the house and neighborhood all looked the same. Neighbors and children were outside laughing and playing. Life was going on as usual, and we felt like we were in a bad dream. I still remember the grim silence in the house. I sat on the bed and felt completely detached from my body. I had foolishly asked the doctor about the prognosis of AS on our way out of the hospital, and she said most girls do not live to see adulthood. I couldn’t get those words out of my mind. When I told my husband, he put a hole through our bedroom door. Our experience since then mirrors many other parents with a child diagnosed with Aicardi syndrome, the multiple medications, the many therapy and doctor appointments, and the heartache of hoping for a miracle and knowing it will never come. It has been hard to live with the overwhelming sadness that never goes away, the lump that sits in my throat, the tears that are ready to flow at any moment. I hate these feelings, but I know this will always be my life and I’m trying very hard to accept it, to let it help me be a better, stronger person, a better mother.

Ellie is now 5 and I can’t remember what life was like “B.E.” I still grieve for my dream of the little girl that will never be, but I realize it was my dream and not hers. She will always be happy being exactly the person she is. She is a confident, secure little girl because she knows she is loved by so many people. My goal in life is to make sure she reaches her full potential and becomes the person God has intended her to be. We don’t always get to choose our path or understand our purpose in life, but I’ve decided this is mine.
Medically, Ellie has several seizures everyday and she is currently taking Lamictal, Klonopin and Neurontin. The primary area of dysplasia in her brain that is causing the seizures is in the right parietal. This is an area that controls spatial awareness of the body, and she will sometimes suddenly have trouble stepping down from a curb or go down the stairs. When Ellie was 11 months old she became seizure free for 13 months. It was a wonderful period in our lives, we were almost a normal family and she was able to catch up on some of her development. Ellie does not have any of the vertebral or costal malformations that are common to girls with AS, and she wears glasses because of a lazy eye which we hope will correct itself within the next few years.
Despite Ellie’s disabilities and medical challenges, she has had many developmental accomplishments which we are very thankful for. She has a lot of scattered skills which range from about 18 months to 4 years. She can walk, climb stairs, play on the playground equipment, and run, although the latter is a little uncoordinated. She has a left sided weakness from the uncontrolled seizures and this sometimes causes her left arm and hand to retract which limits her fine motor skills. The doctors call her left hand a “helper”. She was potty trained at 3 and she learned the alphabet by 3-1/2 after constant exposure to her favorite toy, a Leaptop computer by Leapfrog. Ellie also loves to play on the real computer and she has a touchscreen to help her navigate around the programs (mostly Toddler level like JumpStart and Reader Rabbit). She is starting to sight read and is up to 100 words or so. She communicates using sign language, usually one or two word phrases, to comment on her surroundings or make a request. We are currently working on getting her to sign more completely by pretending we don’t understand her single word requests and prompting for more clarification (“what about the milk?”). Her poor fine motor skills also limit her ability to isolate her fingers so she has a lot of signs that look a like (e.g., light/sun/fan/duck/bird). She also makes up signs or uses a duplicate that sounds similar if she doesn’t know the sign for something. I think my favorite is her sign for tissue which is the same as shoe. Ellie attends an excellent public preschool program and has a wonderful team of teachers and therapists that have been charmed by her personality and are devoted to seeing that she reaches her potential. We have been truly blessed by all the wonderful, caring people who are helping and supporting Ellie while she navigates her way through life.
I worry about how she will fit into the world as an adult and who will take care of her when my husband and I are gone. Some of that worry was lifted in July 2003 when we were blessed with twins, Katie and TJ. Boy did that rock Ellie’s world. After being a little princess for 4 years, she had to share our attention with not one, but two little babies. There wasn’t much time or energy left over for her, and she was very affected by that. Things are much better now, and both Danny and I set aside time just for her as often as we can. She loves to ride on the tractor while Danny cuts grass in the summer, and I stay home on Wednesdays from work because Ellie has the afternoon off from school. We try to do “girl things” but often end up running errands and attending doctor and therapy appointments. But we’re alone together and that makes it special. Every day with Ellie is special.