Category - Special Needs

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Words…
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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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The First Seizure
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Toddler Tornado
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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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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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The First Seizure

How sweet she looks strapped into this retro looking wheelchair. We laughed about how it looked like a prop from the horror movie, “The Changeling.” We made jokes, but what our family had just gone through was far from funny.  Though our daughter has spent her fair share of time in pediatric wards over the past few years — always without complaint and never failing to win over the staff with her sunny disposition and ready smile — this week was truly frightening.    Though our Avery has many challenges, we try not to focus on the “what ifs.” Research tells us that many of the significant medical issues for our daughter tend to present later in life, if at all. Since Avery’s initial diagnosis we’ve had our ups and downs. Mostly ups. Doctors told us that Avery might never walk, or talk but she has proved them wrong by doing both. Tuesday however, after celebrating the great results of her perfect hearing test, things took a nasty turn. I went to wake Avery from her afternoon nap — a nap I let go on longer than usual after a long day of appointments. When I entered her room I found her unconscious.[…]

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Toddler Tornado

Hot damn it’s hard to get anything done with a toddler on the loose. A six year old at least can read or play a game or find some way to entertain himself, but a 2.5 year is a vastly different story. I edit and do the layout for a weekly on-line newsletter (which I’m supposed to be doing right now actually) and also do some freelance writing and odds and ends for a friend’s PR company. But since my friend and I started seriously working on our craft business, I’ve found the need to have a true space of my own. So we converted our guest-room into an office so that I could escape to work undisturbed. At least that was the plan, but somehow these 2 little people keep showing up at my door! Today when I was desperate to get some work done I let “The Tornado” have free reign in my office for about 5 minutes. I made sure my sharp tools were safely out of reach…I learned my lesson from the craft-knife incident last week! The 5 minutes of time gained by letting her go nuts was off set by the 10 minutes it took[…]

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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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