Tag - My special girl

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The Little (Ear) Drummer Girl
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Invited
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Class Photos
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Did She Just Shush Me?
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Sometimes
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When A Mother Lies
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Medicine Cosy
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Taking A Stand
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Boo Hoo, My Baby’s No Longer Two….
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The First Seizure

The Little (Ear) Drummer Girl

The trouble with having a child with an astounding threshold for pain is…they have an astounding threshold for pain. Sure, there are times like during vaccinations or minor scrapes and bumps when it comes in handy, but mostly it’s just scary. If my daughter should ever cry out in pain, we know it’s serious.* Take the time she sidled up to the gas fireplace. Though it had been turned off for some time, the glass was still very hot and she burned a loonie sized section of her calf. Even a tiny burn is agony for most, but she didn’t even feel it. A few days ago Avery seemed slightly under the weather — unusually tired and very pale. She had a low grade fever and not much of an appetite, but she didn’t complain. When she woke up the other morning, weeping, I knew something was wrong. She told me her neck hurt (I’m sure she meant her throat), and her tummy, and her ankle too. Who knew “the ankle bone was connected to the ear bone” because an hour later, her ear drum burst. Our doctor confirmed the yellow liquid oozing from her ear was the result of[…]

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Invited

  It happened. Finally, joyfully, sweetly, my five year old received her first ever invitation to a friend’s birthday party. She tore open the envelope and exclaimed, “I party!” “I so happy,” she said, while I cried big, sucky tears. She asked, “Mummy sad?” No my sweet girl, I’m not sad. I’m thrilled for you. You deserve so much — fun and parties and all the great things that come with having friends who love you, for you. I want to tell this mother, the one who sent out the invitation, how much this means. I’m sure she has no idea.  Avery has carried the invitation around with her all morning and won’t put it down. And now, she wants to go out, like right now, and buy her friend a “bir-day pwsent.” The happiness on this child’s face and the excitement pulsing through her body reminds me, because sometimes I forget, that life is truly a celebration.  Party on big girl. Related: Close Your Eyes and Make A Wish

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Class Photos

A picture may be worth a thousand words, but the words may not always speak the truth.   Case in point, my kids’ class pictures.   My son’s photo depicts him as a social butterfly surrounded by hordes of adoring fans, the consummate centre of attention. In reality, he’s a quiet guy who keeps a small handful of friends close.   My daughter’s picture (below) on the other hand, tells the tale of a child on the perimeter of acceptance. She is the blondie at the end on the first row. A solitary loner at the end of the bench.   In this picture, my daughter may be set apart from her peers, but unlike her brother, she is a social butterfly. She is fully integrated in her classroom. There is no judgement among her peers and she is accepted for who she is.   At first glance, this photo could be unsettling for a family unaware of their child’s scholastic journey.  And not just because of the creepy masks I Photoshopped on my daughter’s classmates due to privacy issues.  Avery adores her teacher, her wonderful EAs and her loving classmates. She is made to feel like a valuable member[…]

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Did She Just Shush Me?

  Last week I took daughter with me on a “Mama is going out and doesn’t have a thing to wear” mission. We popped over to the Espirit outlet in hopes of finding a new shirt. Ever mindful of my…my…budget *shudder* I limited my quest to ONE item. Painful as it was, I sourced out a few tops to try on and headed to the change room…after I helped Avery pick up the pile of purple sweaters she had knocked onto the floor, put back the umbrella and two purses slung over her shoulder and removed the lavender tank top from around her neck. Shopping with a curious child is a challenge. However, how will she ever behave appropriately if she’s never given the opportunity to learn?   While I tried on the first shirt, Avery kept busy by yodeling. She found the echo of the empty change room area amusing. While I struggled out of the blouse (picture Houdini trying to escape from a straight jacket and chains), Avery began to hum.   Eventually her patience ran out and she attempted to escape under the door. I can’t really blame her. It was way more fun out there, unfolding[…]

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Sometimes

Sometimes when you have too much to say, you end up saying nothing at all. I’ve tried to write many times this week. But instead of writing a word, I clicked “close” every time.   Sometimes when life is too hard, you shut yourself off. You assure everyone around you that everything is fine and you try to believe it.    I feel guilty because others have struggles much harder than my own. I have a child with special needs. So what? So do many, many other parents. Our story is not unique. Avery is healthy and happy and beautiful and I should feel lucky. Or so I have been told. But some days, instead of lucky, I feel frightened, frustrated, angry or sad.   I’ve always had the attitude that everything will be okay. This is our normal and life is good. It’s not perfect, but it’s good. It seems you can only go on for so long fooling yourself into thinking your life isn’t hard.  My life is hard. Avery is funny and loving, but she’s difficult. She doesn’t understand “danger.” She is always at risk and it’s taxing living in a constant state of fight or flight.[…]

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When A Mother Lies

I did something awful. I feel ashamed. If you know me, you’re probably expecting a joke or a silly pun right about now. Not today. I feel like a heel.   I brought Avery with me to the drugstore to buy eye drops (and shampoo and a DVD and hairspray and milk and…I apparently need to get this impulse buying thing under control). As I stood in the skin care aisle (I also bought cleanser), Avery picked up the various bottles and tubes and chattered away. Then she spontaneously hugged the guy who was busy stocking shelves. She’s a hugger my girl. And clearly very tactile.    All the while, a young female clerk was casting glances our way. At the check out, that same clerk was organizing the magazines. She asked, “How old is she?” An innocent question, but I hate it nonetheless.  I understand why people ask. ALL THE TIME. They’re simply trying to figure Avery out. She looks five, but acts much younger. “How old is she?” is an attempt to make sense of this disparity.    “How old is she?” asked the clerk. “She’s four,” I answered.    Four? Four?? She’s bloody well five. I’m aware[…]

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Medicine Cosy

I laughed when I opened the cupboard to dose out Avery’s meds for the day and discovered my husband had put one of the medicine bottles in a beer cosy. He reasoned that if one of us dropped the glass bottle the foamy sleeve would protect it. The irony of the statement inscribed on the cover did not go unnoticed however. I’ve been so consumed by the threat of seizures that I haven’t been focusing on the myriad of medical, genetic and developmental concerns. Now that we’re experiencing a bit of a reprieve ( six weeks seizure free), my attention has returned to researching and planning and of course, worrying. I know it’s futile to worry about the future and things which are out of my control, but with kindergarten looming, it’s hard not to fret. It’s also futile (and stupid) to make comparisons. I know this, but yet I can’t seem to help myself. I took Avery to a play date over the March Break and I was looking forward to a morning with three lovely girlfriends with whom I’d spent my last maternity leave. Our children are the same age and I’ve watched them grow from babies to[…]

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Taking A Stand

I’ve never considered myself a very assertive person and definitely not a confrontational one. Over the past two years we’ve worked with cardiologists, neurologists, therapists, orthotists, geneticists, pharmacists—so many people whose title ends in “ist”. There was a time when I followed a doctor’s advice without question. They were the professional – the expert. Who was I to question them? Now I question everything. I research every word. I seek second and even third opinions. I don’t care if I get glared at. I don’t care if I’m a pain. 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 home to tell me an ambulance was there 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. After 8 hours, they 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 family, we now have a[…]

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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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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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