Friday, February 28, 2014

Its Rare Disease Day



Our family cares about rare. Rare diseases that is. Two of our kiddos have rare disease diagnoses and neither of them have a complete diagnosis yet (meaning there are still things going on with their bodies that we are looking for answers too through testing and the expertise of an excellent medical team).

We are now over five years into this journey since our second son was born appearing totally healthy at birth only to crash into a major health crisis within a few weeks of being born. In that time we've had a roller coaster of ups and downs and we've met many new people along the way. Some of those people are the doctors, nurses, therapists, phlebotomists, radiologists, social workers, respiratory therapists, and receptionists that have helped us navigate through the medical care we've needed for the kids. Some of those people are other parents who are raising kiddos with rare diseases or who have them themselves (or in the case of some families both).

Why the focus on rare? Though all three of my kids have various health issues there is something radically different between a disease, syndrome, or illness that most doctors have seen or at least heard of and one that requires you to luck into a certain type of doctor (that may not be available in all areas) and/or a certain type of uncommon test (that the provider you have may not be able to order). Unfortunately we have had doctors who don't know what is wrong tell us that nothing is wrong even when clearly there is something wrong, and we aren't alone. Sadly its an all to common theme. Or else a misdiagnosis is given... something more common that doesn't quite fit is made to fit depending on the range of expertise of the care provider.

Some rare disease facts from The Global Genes Project

*80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear

*Approximately 50% of the people affected by rare diseases are children

*30% of children with rare disease will not live to see their 5th birthday

*Rare diseases are responsible for 35% of deaths in the first year of life

*The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases


We have gotten very lucky with our boys. When Linus was an infant we didn't think he would make it to his first birthday and now he is five. When I was pregnant with Malachi I was desperate for a baby who would breathe normally and ended up holding another of my infants in my arms as they were turning blue. The road with him has been an ongoing management of crisis points as he has multiple life threatening things going on with him. Yet despite all the challenges he has beaten the odds and will be three and a half next week. 

Our lives wouldn't be the same without our rare disease experiences. I hope for answers and treatments or cures one day for not just my two sweet rare kiddos but for all of the 350 million people worldwide who have a rare disease.


Thursday, January 9, 2014

How Not to Behave in a Parking Lot

To the woman in the black SUV at Costco:

I was really quite confused when you pulled in front of my newly parked vehicle and blocked me in but I let it go. When you rolled your window down and glared at me as I was attempting not to slip on the ice I didn't feel like killing myself to walk over to you but I listened to your sign language asking if I had an accessible parking permit and nodded yes quite politely with a smile even though it was visible on my dash.

You sat and watched me take my child out and into a cart after making sure it was as safe for him as I could while he screamed and fought me. Pretty much the last thing I needed at that moment was for you to roll down your other window as I walked passed you and say

"You can't effing park here just because you have a kid... Even if he is screaming!"

I'll admit I didn't respond right away because you caught me off guard. Before I could respond you apparently thought my shock at your rudeness was lack of understanding and added:

"You can't park there, it's for people like me who have a permit. I've called the cops on you. You have to have a permit to park there."

At which point I found my voice and my righteous indignation and told you "It's displayed on the dash. Thanks for your concern."

In the spectrum between total dependence and fully able bodied my spouse does not always look disabled. At the time you were losing your mind on me he was not responding as he was focusing too hard on not falling and breaking a hip on the ice as he does not have full control or range of movement in his left leg since the stroke. For that matter the kid you were sneering at for yelling about being in a cart is autistic and immunocompromised (part of what took us so long getting him in was making the cart safe for him) and has a chronic lung disease.

I get it. Disabled people don't always look disabled. Which is why I smiled and polite when you asked me your initial question even though I wanted to just get on with my day.

Once you brought yourself to my attention I noticed you were alone in your vehicle and fairly young yourself, probably less than a decade older than myself. I'm sure you've probably encountered people making snap "young must be able bodied" judgments about you and so I don't understand at all why you'd do so to someone else.

No one likes when people park in accessible spots who don't need to. Least of all the disabled persons who actually need them. But c'mon now. Next time a smile and a lot less asshole would be much appreciated.

Thanks,

A woman in a blue van who just wanted to buy some bread and return a game


PS: To the elderly gentleman parked in the accessible spot behind us when we went to leave your smile and chatter to our three year old to calm him down was so much appreciated. He wanted you to come right over and visit with him which is rare for him but we understood fully that you were safer not risking more ice when you were already at your car. Thank you for the kindness. You don't know how much we all needed it.

Tuesday, November 5, 2013

Day 5 of Thankfulness

Today is my fifth day of my thirty days of thankfulness I've been doing on Facebook but today I had too much to write to cover there.

Today I am reminded of how very grateful I am for my siblings. I'm one of five kids, when I was born I was a little sister, two years later I became a big sister, and for the last 18.5 years I've been the monkey in the middle. I have it all... An older sister, an older brother, a younger brother, and a younger sister.

Through the years I've certainly had my ups and downs with all of them. I think only my youngest sister has escaped a time when we weren't talking to each other. But today when I think of any of the four of them I know that I am lucky. I would not be who I am without any one of them having not been my sister or brother.

Missy... You were always the big sister who knew everything I didn't. At nearly 9 years older than me you were the bridge for me between the kids (who I usually believed I knew better than) and the adults (who were obviously too old to know anything). I didn't appreciate until it was me with the much younger sister how much work went into being the older one. Making sure we were all taken care of on sibling only outings, making sure we had time and memories together. It wasn't until I was even older than that that I realized that no matter how much we disagreed you were always coming from a place of worry and love because I was your little sister. Not just some random person, but someone you'd loved since before I ever got here. I look forward to getting old(er) with you and the memories we have to look forward to. I love you.  

Matt... My giant of a big brother. I always knew you'd keep me safe when I was with you. You'll never know how much your ability to always go along with what I wanted to do meant to me. The memories (and pictures!) of dressing up in costume jewellery are priceless. I wish we had less time and distance between us. I am grateful for the role that you've played in making me believe in the safety that can come from a big brothers arms (and warnings to all who may want to hurt his little sister!). Even when I wasn't listening to what you were saying I was hearing it in my heart and I'm grateful for the perspective you gave me. I love you.

Stuart... The one who knows what it's like to live with me all the time (poor you :P). You taught me how to love another person more than myself. With you I exemplified the notion of "Sure I can knock him down but if you do it you will have hell to pay from me". Who besides you will know what is coming when I say "Alberta, Saskatchewan, Manitoba, Ontaaaaaario", or will know that when I ride the train I ride it alllll the way. You've wiped my tears and held my hand and kept my secrets. I love you.

Andie... My baby girl. I've wanted you since before you were even concieved. From the minute I first saw you sleeping in our room at a day and a half old I thought you were the most beautiful baby sister I could've imagined. Through you I got to have a sidekick, someone to follow me around believing for a time that *I* held all the answers. Laying in bed with you at night as you told me all the things you knew and loved and were worried about are memories that shaped how I parent today. Now you're an adult too and I cannot wait to see how your life unfolds and make many more memories along with you. I love you. 

My siblings. Without them I wouldn't be me. I couldn't be me.

Thursday, October 24, 2013

Ages 3+: 1001 Children's Books You Must Read Before You Grow Up

Total Books: 124
Books Read: 1 - .008% done

  1. A Bear Called Paddington (1958)
  2. Alfie Gets In First (1981)
  3. Amazing Grace (1991)
  4. Angelina Ballerina (1983)
  5. Avocado Baby (1982)
  6. Bad Habits! (1998)
  7. Barbapapa (1970)
  8. Blinky Bill (1933)
  9. Brown Bear, Brown Bear, What Do You See? (1967)
  10. Burglar Bill (1977)
  11. Can't You Sleep, Little Bear? (1988)
  12. Clever Bill (1926)
  13. Clifford the Big Red Dog (1963)
  14. Clown (1995)
  15. Corduroy (1968)
  16. Crocodile Beat (1988)
  17. Crispin (2000)
  18. Curious George (1941)
  19. Dogger (1977)
  20. Don't Let the Pigeon Drive the Bus! (2003)
  21. Dusty Wants to Help (1983)
  22. Eloise (1955)
  23. Ernest and Celestine Have Lost Simon (1981)
  24. Father Christmas (1973)
  25. Felix and Alexander (1985)
  26. Fire-Engine Lil (1989)
  27. Freight Train (1978)
  28. Frog in Winter (1992)
  29. Garden of Little Creatures (1994)
  30. Go, Dog. Go! (1961)
  31. Gorilla (1983)
  32. Green Eggs and Ham (1960)
  33. Guess How Much I Love You (1994)
  34. Hairy Maclary from Donaldson's Dairy (1983)
  35. Harry and the Bucketful of Dinosaurs (1999)
  36. Harry the Dirty Dog (1956)
  37. In the Night Kitchen (1970)
  38. Is That a Monster, Alfie Atkins? (1978)
  39. Ivor the Engine (1962)
  40. Jamela's Dress (1999)
  41. Knuffle Bunny: A Cautionary Tale (2004)
  42. Léo and Popi (1980)
  43. Little Blue and Little Yellow (1959)
  44. Little I Am I (1972)
  45. Little Toot (1939)
  46. Lost and Found (2005)
  47. Lotta's Bike (1971)
  48. Love You Forever (1986)
  49. Lyle, Lyle, Crocodile (1965)
  50. Madeline (1939)
  51. Madlenka (2000)
  52. Marc Just Couldn't Sleep (2001)
  53. Marigold Garden (1885)
  54. Martine (1954)
  55. Max (2000)
  56. Mike Mulligan (1939)
  57. Mister Magnolia (1980)
  58. Molly Goes Shopping (1998)
  59. Moomin, Mymble, and Little My (1952)
  60. Morris's disappearing Bag (1975)
  61. Mother Goose (1881)
  62. Mousehole Cat (1990)
  63. Mr. Archimedes' Bath (1980)
  64. Mr. Tickle (1971)
  65. My Cat Likes to Hide in Boxes (1973)
  66. My Naughty Little Sister (1952)
  67. Okilélé (1993)
  68. Old Bear (1986)
  69. Olivia (2000)
  70. One Snowy Night (1989)
  71. One Wooly Wombat (1982)
  72. Orlando (1938)
  73. Ox-Cart Man (1979)
  74. Owl Moon (1987)
  75. Pancakes for Findus (1985)
  76. Peace at Last (1980)
  77. Peter in Blueberry Land (1901)
  78. Poems for the Very Young (1993)
  79. Possum Magic (1983)
  80. Postman Pat's Treasure Hunt (1981)
  81. Pumpkin Soup (1998)
  82. Rosa Goes To Daycare (1999)
  83. Runaway Train (1995)
  84. Sleep Well, Little Bear (1993)
  85. Slinky Malinki (1991)
  86. Stina (1988)
  87. Tatu and Patu in Helsinki (2003)
  88. T'choupi (1992)
  89. The Big Honey Hunt (1962)
  90. The Cat in the Hat (1957)
  91. The Children of the Forest (1910)
  92. The Church Mouse (1972)
  93. The Cow Who Fell in the Canal (1957)
  94. The Gruffalo (1999)
  95. The Jolly Aunt (1891)
  96. The Little House (1942)
  97. The Little Red Lighthouse (1942)
  98. The Magic Pocket (1998)
  99. The Quangle Wangle's Hat (1876)
  100. The Sea-Thing Child (1972)
  101. The Snowman (1978)
  102. The Story About Ping (1933)
  103. The Story of Babar (1931)
  104. The Story of Ferdinand (1936) - read in October 2013
  105. The Story of the Little Mole (1994)
  106. The Story of the Root Children (1906)
  107. The Tale of Jemima Puddle-Duck (1908)
  108. The Tale of Mr. Jeremy Fisher (1906)
  109. The Tale of Peter Rabbit (1902)
  110. The Widemouth Frog (2001)
  111. The Wonderful Tree (1969)
  112. This is the Bear (1986)
  113. Unknown or Forgotten Princesses (2004)
  114. Up in the Tree (1978)
  115. Uppo the Bear (1977)
  116. We Are the Triplets (1983
  117. What Do People Do All Day? (1968)
  118. What Does the Mouse Think on Thursday? (1967)
  119. Where the Wild Things Are (1963)
  120. Where's My Teddy? (1992)
  121. Who's Seen the Scissors? (1975)
  122. Window (1991)
  123. Winnie the Pooh (1926)
  124. Winnie the Witch (1987)

Wednesday, October 23, 2013

Ages 0-3: 1001 Children's Books You Must Read Before You Grow Up

Total Books: 37
Books Read: 1 - 2% done

  1. Alvin Says Good Night (1996)
  2. Bathwater's Hot (1985)
  3. Bedtime for Frances (1960)
  4. Bunny Bath (1990)
  5. Dear Zoo (1982)
  6. Each Peach Pear Plum (1978)
  7. Elmer (1989)
  8. Fly, Little Bird (1977)
  9. Good Dog, Carl (1985)
  10. Good Night, Alfie Atkins (1972)
  11. Goodnight Moon (1947)
  12. Handa's Surprise (1994)
  13. Humphrey's Corner (1999)
  14. Julian the Rabbit (2001)
  15. Kipper (1991)
  16. Lavendar's Blue (1954)
  17. Little Brown Bear (1975)
  18. Little Spook's Baby Sister (1977)
  19. Maisy Goes to Playschool (1992)
  20. Make Way for Ducklings (1941) - read October 2013
  21. Meg and Mog (1972)
  22. Miffy (1963)
  23. Mr. Gumpy's Outing (1970)
  24. Owl babies (1992)
  25. Pat the Bunny (1940)
  26. Rosie's Walk (1968)
  27. The Baby's Catalogue (1982)
  28. The Bear Went Over the Mountain (1999)
  29. The Elephant and the Bad Baby (1969)
  30. The Little Engine Who Could (1930)
  31. The Runaway Bunny (1942)
  32. The Three Railway Engines (1945)
  33. The Very Hungry Caterpillar (1969)
  34. Thomas the Tank Engine (1946)
  35. Tickle, Tickle (1987)
  36. We're Going on a Bear Hunt (1989)
  37. Where's Spot (1980)

Monday, October 14, 2013

Happy Thanksgiving Update

We are almost half way through October. I can't believe it. This week was another great reading week. I only have 7 books left and then I will be done all of my 2013 challenges! Today I am off to spend time with my family enjoying Thanksgiving. I hope all my fellow Canadians enjoy their Thanksgiving today as much as I am going to.

73 Books Challenge: 73/73 books read (DONE)
Library Books Challenge: 50/50 books read (DONE)
A-Z Book Challenge: 26/26 books read (DONE)
Classics Catch Up Challenge: 12/13 books read (92% done)
Books by Women Challenge: 16/16 books read (DONE)
Eclectic Book Challenge: 12/12 books read (DONE)
Literature and War Challenge: 8/12 books read (75% done, 2% behind schedule)
Classic Kids Book Challenge: 10/12 books read (83% done)
Books Tobias Picked: 5.5/6 books read (91% done)

Sunday, October 13, 2013

2013 Books in Review #17: Children of the New World


Children of the New World was the July selection for the Literature and War Reading Challenge hosted by Beauty is a Sleeping Cat.
The book is set out in a series of chapters each from a slightly different character perspective, rather than one overall main character. It is set during the Algerian war, their independence from French colonization. The characters are linked within a small community, some by marriage or blood, others by work or love or friendship or the law.
I really wanted to love this book. It is written by a leading authoress, who is considered to be one of the best in her field. She is notably anti patriarchal, and writes with a feminist slant. I found the book had gaps that made it hard for me to follow and because I didn't know a lot about the French-Algerian conflict my loss was magnified to the detriment of my loving the book.
Overall I'd like to go back and read more of her works. This has been said to be one of her weaker works and so I am wondering if the structural issues I had with the text would be gone in a different work.
Children of the New World was my 59th book of the year, and my 6th book read for the Literature and War reading challenge.