POSTS WITH TAG: our special life

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    I mean really ... how could I not miss them?Last fall, I was offered a fantastic opportunity for a job. I was all set to take it, until I found out that they didn’t want me to work remotely for the two-month stint -- they wanted me on site in Boston.

    I tossed the idea out the window, because Boston is 3,000ish miles away from my San Diego home, and that’s one heck of a commute. Then the planets aligned, my husband told me he could hold down the fort, and my mom said she’d take care of the kids after school. Three days later, I was kissing my babies goodbye and flying across the country.

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    Emma Mutz has the distinction of being one of the most energetic, lively, funny, good-natured kids I've ever seen. Maybe 11-year-old Emma, who stars in this installment of the CafeMom Studios series Our Special Life, is so cool because she's the baby in a family of 12 children. Maybe Emma's so full of life because she's been a passionate swimmer since she was just a tot. Oh, have I mentioned yet that Emma has Down Syndrome? I almost forgot, because Emma is so incredibly "special" in so many ways.

    Her mom Pamela says "there's no better place than a large family" for a kid with special needs, and I think she must be right.

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    As moms, we all worry about our kids when we are not with them. But imagine if the simple things that are normal parts of childhood, like a friend's birthday party, eating lunch at school, or even spilled milk pose deadly dangers to them.

    That's the situation faced by Natalie. Her daughter Emma has severe food allergies. She's allergic to every major food allergen except wheat, and each allergy is severe enough to be life-threatening if she's exposed.

    Sounds like a stressful way to live, no? But Natalie, her husband Jeff and their older daughter, Violet, have found ways to work around Emma's allergies and have a normal family life.

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    When Sarah Porath learned her daughter, Annabel, had a rare chromosomal disorder, she mourned the dreams she'd cherished during her pregnancy. But at 5 1/2, the eldest of the Porath's children is walking and talking, and doing many of the things other kids her age are up to.

    Because even though Annabel has autism in addition to isodicentric 15, the rare disorder that caused a portion of her 15th chromosome to duplicate, the little girl has had what's known as hippotherapy to help her along the way. In other words? This girl so tiny her mom calls her a peanut rides horses.

    And as the Poraths showed CafeMom Studios, its changed the course of her future. Check her out!

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    Parents of kids with special needs know, usually pretty early on, that something is not quite right.

    In a perfect world, they see their doctor, get a clear, treatable diagnosis, and can get to work getting their child the help they need.

    For mom Cricket Azima and her son Kingston, though, they are stuck battling Kingston's many developmental delays without any sort of formal diagnosis. Tests for Angelman syndrome, which his symptoms most closely mirror, come up negative.

    Can you imagine how frustrating that would be? A diagnosis is important to be able to qualify for special needs services through a school system or other public agencies, and probably to have services covered by insurance (although she doesn't mention that).

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    Moms are awesome. Need proof? Meet Tanna. Her son, Hunter, has severe hearing loss and received cochlear implants to help him hear.

    Dealing with the effects of Hunter's severe hearing loss has meant at least biweekly trips back and forth to Nashville from their home two hours away so he can get the therapy he needs. And she doesn't get to just sit in the waiting room and read a magazine...she's right there working with the therapist so she can help him at home as well. Check out what they're doing in this video, after the jump:

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    Ever wonder what a normal family looks like? Debra Markell doesn't. She has a daughter in a wheelchair thanks to a rare form of muscular dystrophy and a son without any health complications at all. And the way she sees it, her family is perfectly normal.

    It's a lesson more and more families of kids with special needs are getting to share thanks to CafeMom Studios' new series, Our Special Life. From the outside, people see challenges. But on the inside of the Markells' house, it's the challenges that mark them as not so different.

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    I'm pretty much in awe of Lori Planson, the mom featured in this episode of the CafeMom Studios series Our Special Life. Her daughter, Emma, was born without something most of us take for granted: Vision.

    I can't imagine how devastated the new mom must have been. Still -- and this is the part that blows me away -- she was more determined than despondent.

    Lori didn't want Emma to feel like she was missing out on everything life had to offer ... and one only has to watch the now 5-year-old Emma in action for a few minutes to know that she hasn't missed out on a single thing (and probably never will!).

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    I adore being a Mommy, on most days, but the terms that some people use to refer to us can be pretty condescending. But maybe they just don't realize how insulting they're being.

    Allow me to clear it up a bit.

    Let’s start with the word that I hate the most, and I do not use it ever. This is my instantaneous, see red, fighting word. There is only one that's worse, but I can't use it in the presence of you ladies.

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    Sydnee Jorgl's hero isn't a politician or a celebrity. The New York City mom's hero is an 11-year-old boy with autism: her son, Ian. Born with what some would call a disability, he is doing amazing things with his life by waking up every morning and coping in a world where he doesn't fit the mold.

    Ian is like thousands of kids with special needs, and thanks to families like the Jorgls, America is getting a look-see inside their worlds. They're the new stars of Our Special Life, CafeMom Studios' tribute to these amazing little heroes. First up? Ian Jorgl, of course:

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