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One Very Healthy Looking Child . . . Two Very Serious Medical Conditions
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Hailey’s Story |
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Hailey with her mom! |
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Hailey’s Parents’ Story |
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It seems that only parents of kids with special needs truly understand what it’s like to be a parent of a child with special needs. People wonder what’s going on? Why are you so flaky? Why can’t you get your act together to get thank you cards, Christmas cards, or anything else together? Why can’t you be the classroom mom? Why does it seem like you’re always taking your daughter to the doctor? Where are you? Why don’t you answer our phone calls? Return our e-mails? Why can’t you do it all? The answer is we ARE doing it all. Being the parent of a child with special needs takes an extraordinary amount of time and energy. Every doctor’s appointment, every procedure, every medication, EVERYDAY, watching, waiting, anticipating, medicating, reading food labels, cooking three separate meals, making special baked goods, explaining it all to people who only pretend to want to know and never fully understand, keeping track of peak flows, respiration rates, stool frequency and consistency, food diaries, cleaning, cleaning vomit from the car, the couch, the carpet, the bathroom floor, the table at McDonald’s where she threw up all over three of her friends’ Happy Meals, then going over the food diaries to see what happened, cleaning, cleaning soiled sheets, towels, clothes, then going over the food diaries to see what happened, treating hives, treating boo-boos without the use of ice or half the medications and ointments on the market to treat them because they contain something she’s allergic to, shopping, traveling more than 30 miles to buy frozen macaroni & cheese, the only kind she can eat that doesn’t take you over an hour to make, traveling to another store 20 miles from that store to buy bread and cake mix, then more baking, working, one working two jobs, one staying at home all day with the kids, then working nights and weekends, working to support the co-pays, hundreds of dollars every month in co-pays, thanking God everyday for insurance companies that are paying out more than 10 times what you pay in, researching, researching the newest treatments that may help even if it’s just for a moment, a day, a month, hoping it will help forever, researching the best doctors in the field, hoping you can find one that lives within 2 hours of you that really can help, thanking God everyday that you did find THAT doctor, researching not for profit organizations, figuring out which do the most for your child and what you can do to help them, then hoping you don't appear too flaky to them, researching politicians, researching universal healthcare plans and how they could help or hurt you in your position, planning, planning meals, planning events, birthdays, holidays, trying to make every event be as normal as possible for everyone in your house and everyone who may join you, planning vacations years in advance, making sure that doctors give you all the necessary paperwork to take medications & vital fluids through airport security, planning two years in advance to enter kindergarten, planning 504 plans to ensure that every accommodation that is needed under the ADA can be met, researching & asking what other parents have done with their child with similar needs, supporting & reaching out to other parents, finding support groups, reading hundreds of threads on support boards looking for the words that give you hope, inspiration, understanding, hoping that someone is sympathetic, empathetic, even just not apathetic, knowing most of the world is, hoping that the next time someone asks you what is wrong with your daughter they actually want to know, they want to understand, they want to help, knowing the chances of that are slim to none, living with judgment, judgment over parking in a handicapped space, when no one is obviously handicapped, judgment over the tantrums brought on by sore stomachs, steroids and just the day to day living with pain, listening to unsolicited advice from people who have no idea what they’re talking about, praying, praying that one day she’ll just wake up and not be sick, praying that somebody somewhere will discover the miracle drug you’ve been praying for, praying that life will just continue to have some sense of normalcy for the healthy people in your family despite what they all deal with on a daily basis, so, we’re sorry for being occasionally flaky, for missing the mark here and there, we have been busy just trying to survive, just trying to help Hailey survive . . . |
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Dad, brother (Trevor), sister (Alyssa) & Hailey |
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The Poems Below Are Absolutely Inspirational and Wonderful! |
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To You My Sisters |
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He is my Son |
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Where are the Parents? |