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Sweet little Emmelia is our Opitz G baby. Never did we expect a child with disabilities. My husband and I are young and healthy. We don't have a family history of mental or physical problems. We had already had one healthy girl, and were looking forward to the birth of our second child. When Emmelia was born it was wonderful. Our family felt complete and I was in a state of euphoria for a few weeks, until we noticed how very much she slept. I could hardly wake her to nurse. She seemed to sleep so deeply but she was gaining weight and seemed otherwise healthy so we ignored our intuition and went on as normal. Until she got a diaper rash that just wouldn't go away. I took her into the pediatrician expecting to get a tube of diaper cream. What I got was an emergency scheduling of chest x-rays and the shocking news that my daughter had a very serious hole in her heart. A few hours later, as our car sped toward the children's hospital, I squinted under the faint freeway lights trying to read the admitting information with trembling hands. I marveled at that totally unrelated rash that had led the doctor to discover her life threatening problem.
A few months later there was the cardiac surgery to repair her heart, and then another month struggling to save her life as her body rejected the vital help it had been given. We spent Christmas beneath oxygen tubes and heart monitors, wrapped in the sterile smell of cardiac ICU.
You'd never know it now, to look at this big happy girl with the curly red hair swinging her arms to the music on the screen. You'd never guess the anguish we lived, the dread we felt every time the Doctor told us of her newest problem. And problems there were! She couldn't eat without an NG tube and eventually that led to another surgery placing her G tube. Then there was the MRI because we thought her skull plates were fusing too quickly.
" Mr. and Mrs. Dresdow, her skull looks fine, but we found that she is missing part of her brain." Through the shock I thought , "Well, I guess that explains the developmental delays." And on and on it has gone. Emmelia stumbles through this life and we stumble with her. But she enjoys the journey and smiles all the time. Without her wonderful attitude and enthusiasm I would probably have sat down and given up in tears a long time ago. But she is such an inspiration to us all, especially her sister, Shelby-Lane. Our girls love each other fiercely. Oh, they quarrel and bicker , I am constantly being called in to mediate an argument, but they are lonely when apart, their hearts have melded into one.
I remember when Emmelia was first born how Shelby hovered over her constantly sticking her face directly in her little sisters. They do the same thing today, bonking heads and laughing. It looks painful to me, but they seem to love it, to need it actually. During the times of ICU when Emmelia was near death it was Shelby-Lane who assured us that she was going to live. It wasn't a childish wish, she said it with absolute conviction and she was never worried. I really believe she knew, although I cannot explain how.
Big sister Shelby-Lane enjoys helping feed Emmelia.
Some other challenges we presently face are spitting when she is mad, and a tremendous fear of both dogs and water. Some days these fears are enough to drive me batty, like the day I mistakenly took her to the petstore. A BIG no-no! These days Emmelia follows Shelby around like a little puppy. She tries to imitate her every move, both the good and the bad. When the therapists can't get Emmelia to do something I just smile and say "I'll have Shelby get her to do it". At first they looked at me funny, but no longer. They have seen the power of an older sister, and now they actually plan their strategies around it. Now I frequently hear "Could you have Shelby do such and such in front of her?"
That's the good side. Shelby has also taught her little sister to hit and how scream at the top of her lungs, especially when she's on her way to a time out. And nobody pulls hair quite as well as our little Mia. We are working on these things.Fortunately we have a great team of therapists and doctors backingus up and cheering us on. Currently Emmelia receives cognitive, eating, speech, and physical therapy once a week from therapists who come to our home (only draw back being that I have to clean the place). She also attends a group session once a week. She has made much progress in the past year. She has learned 25 words in sign language (nope, she's not talking yet), she has learned to walk up and down the stairs by herself (very slowly!), and she has come a long way on her eating skills even though she is still tube fed. We hope to have her eating on her own within a year, it is a cherished goal but we are realistic also, it may just be too much. We set high goals, and try hard, but don't get disappointed if we can't meet them, around here it is 'try and try again.'
What I love most about my little girl is her great personality. She is sunny and loves to give huge, tight hugs. She blows kisses to everyone. A few weeks ago I was getting gas in the car and when the station man came to give me the receipt he was smiling. "Your girls are waving and blowing me kisses," he said. I was about to apologize when I saw how much he was enjoying it. Well, I thought, it might be embarrassing for me, but it's good for the soul, both theirs and his. We still face challenges both medical and emotional with Emmelia on an almost daily basis. We try not to let down our guard, it seems everytime we get comfortable some new thing comes up, like the asthma we faced all winter. But we love her and she is very much worth the struggle. Perhaps the struggle is what makes her all the more precious to us. We know the value of her life. We know the value of her love.
