Tag - special needs

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Words…
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The Beginning—This Is Not The Life We Ordered
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I’m Lucky To Be A Stay At Home Mom

Words…

The letter M isn’t very commanding on its own. An E flying solo has very little influence. But when united in a word, they become powerful. I’m aware that I talk more than the average person and I don’t even say half the things I’m thinking at any given moment. I suppose this is why I enjoy blogging–it’s like a shunt, releasing the pressure of the words in my head. Words are beautiful when crafted by someone with a kind heart. Words can soothe when spoken by a gentle soul. But, words wielded by the ignorant and tactless can leave behind a painful mark. Last week my daughter happily drew lines on a chalkboard in our doctor’s waiting room. A woman sitting beside me asked how old my girl is. When I told her, she said, “Awfully small for three isn’t she?” The response in my head was, “Well you’re awfully stupid for 60!” What I actually said was, “Yup. She’s our little girl.” As my daughter drew, she and I communicated using signs. The woman leaned over and asked, “Does she talk?” I explained that she has a speech delay, but is a proficient signer. This woman then told[…]

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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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I’m Lucky To Be A Stay At Home Mom

If you’d told me that one day I’d leave my job to be a stay at home mom, I never would have believed it. I went to school to be a teacher dammit. I’ve always wanted to be a teacher. As if I’d give that up… Of course I love my kids and I want to be with them. But not like, all the time. I’d always planned to parent AND work—in perfect balance. Because that’s totally doable, right? I thoroughly enjoyed mat leaves with both my babies, but knowing I’d soon be back at work made it easier to enjoy every moment. The light at the end of the tunnel shone bright. Mid-way through my mat leave with my second child, daycare was set up, schedules were organized and I was ready to go back to the classroom I loved, to a job I was really good at, blissfully unaware that things were about to change. At 8 months, our daughter became very ill and was hospitalized. Avery was diagnosed with a rare (as in one-of-a-kind-where-in-the-hell-did-this-come-from-holy-shit) genetic condition. Doctors didn’t have much information so we had no idea what to expect. The geneticist painted a grim picture, tossing out gems like,[…]

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