Archive - August 2009

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How Confronting My Child’s Doctor Brought Me Peace
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The Beginning—This Is Not The Life We Ordered
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Boo Hoo, My Baby’s No Longer Two….

How Confronting My Child’s Doctor Brought Me Peace

Since our daughter was little, we’ve worked with cardiologists, neurologists, therapists, orthotists, geneticists, pharmacists, speech pathologists—so many “ists.”. There was a time when I followed a specialist’s advice without question. They were the professional—the expert. Who was I to question them? That was then. Now I question everything. I research every word. I seek second and third opinions. I don’t care about the glares. I don’t care if I’m disliked. I do care about my children. They are my priority. Last week my husband took the kids to his parent’s while I hosted a party at our house. At 11:30 p.m. he phoned to say an ambulance was coming to take Avery to the hospital. She was having a seizure that wouldn’t stop. I met them in the ER. The seizure eventually stopped on its own, without medication this time. They eventually sent us home and told us to follow up with our neurologist. The following afternoon, I put Avery down for her nap. Thanks to our generous family, we now had a video surveillance camera in her room. I could see her lying in her crib on her side, staring, not blinking. I ran to her room as her eyes began repeatedly[…]

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The Beginning—This Is Not The Life We Ordered

My husband gave me a tacky beer cozy—you know those foamy cups that insulate your bottle? “This is not the life I ordered!” was written across it in neon letters. It was a silly gag gift for an occasion I can no longer recall. When our daughter was diagnosed with the genetic disorder that would change all of our lives, I dragged out the beer cozy from a box in the basement and announced that I would be using it to hold all future beverages.  The Beginning: When our daughter was four months old we had concerns. This baby, our second child, wasn’t gaining weight, she refused to nurse or drink from a bottle, and she wasn’t achieving the milestones associated with her age. By six months we were worried. By seven months we were frantic. Our family doctor (the only medical professional who actually listened to us), was at a loss. She ordered the necessary genetic testing, and in the meantime referred us to a pediatrician who I took Avery to see several times. On the last visit, near tears, I begged him to take our concerns seriously. My husband and I knew something wasn’t right. His response to my plea for[…]

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Boo Hoo, My Baby’s No Longer Two….

Teary, Blubbery, Gloomy, Snivelly, Sappy, Sucky and Sobby The new cast of the Seven-Dwarfs? More like a perfect description of me approaching my baby girl’s 3rd birthday. Maybe I was a little grumpy or even a titch witchy? No. Not really witchy (I just used that word so I could use a photo of me as the witch from Snow White!) Really, I was more of a weepy, mush-bag. I could easily write a post wrought with emotion describing how far our little girl has come. How she’s faced obstacles and countless trips to hospitals and appointments with a smile and that giggle of hers that makes me want to laugh and cry at the same time. I could go on about how her daddy and I burst with pride every time she accomplishes a goal or does something that she was never “supposed” to be able to do. I could. But I won’t. Every parent’s child is special. Every parent bursts with pride on a daily basis. And, every parent feels sentimental on their child’s birthday. I’m no different. This year my husband, 6 year old son and our dog Roger (What? He’s totally part of the family) made[…]

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