Purple Day was first recognized as the official day for epilepsy awareness in Canada on June 28, 2012, in an Act of Parliament put forward by the Hon. Geoff Regan, M.P. for Halifax West. Bill C-278 met with resounding all-party support and became the only legislation of its kind in Canada. The Act demonstrates meaningful support to the 300,000 Canadians living with epilepsy and helps to reduce the stigma and discrimination that is often associated with the disorder.

You can read more about this amazing day in Canada here at the Canadian Epilepsy Alliance website.

For those of you who aren’t familiar with Purple Day, it was created by a young girl – Cassidy Megan from Nova Scotia, Canada in 2008.  Cassidy created the idea of Purple Day to share her own struggles with seizures and to get people talking about epilepsy.

Just in case you were wondering, Pembe is Pink in Turkish.  It was one of the first words I picked up when I lived in Turkey, well that and Otur which means sit down.  As a kindergarten teacher this came in very handy with a class full of 4/5 year olds.

Back to Pembe Bear – PB has never missed a hospital stay or surgery and tomorrow Ladybug is scheduled for surgery.  Her PEG G-Tube will be replaced with a “big girl” Mic-Key G-Tube, and if all goes well and they are able to find a good line Ladybugs Port-a-Cath will be removed completely. If they aren’t able to find a good line there is a chance a new port-a-cath will be put in its place. I’m obviously hoping for the first.

I will be sure to post updates after the surgery.

Not exactly that is.

Before our little Ladybug was born we were in a very unsure place about fulfilling our dreams of becoming parents.  After back to back  miscarriages I questioned whether I’d be able to carry to term.  We began to explore adoption both within Canada and around the world.  Lo and behold, shortly after I became pregnant – and against all odds gave birth to a very special little Ladybug.

The thought of having multiple children never really left and as Ladybug gets older, I’ve begun to see how much she enjoys being around children.

While looking into adoption once again we dove into a world I never thought to explore – but one that would be the perfect fit for our family.

Fostering.

There are so many children who need temporary loving, stable homes – I knew it was the path for us. I will be honest it has been a long….very long path to bring us here.  Nearly a year of training courses, interviews, meetings, and diving into our pasts with a fine tooth comb. Yesterday, February 25, 2013 I received the call that we are officially “On The Board”.  I’ve been yearning to hear those words for months, and couldn’t help but blast some music and dance around the house with Ladybug in celebration.

On the board means exactly that. Our names have been placed on a big board stating that we are available to take a child immediately. I’ve been preparing/child proofing our home for several months now, guest rooms have been moved around and a room fit for a princess or prince was created. I’m incredibly excited to watch Ladybug interact with her new sibling(s), and think it will be a fantastic experience for her and the children to learn about tolerance, acceptance, and love.

I also want to send a huge thank you to our family and friends who took the time to write references, watch Ladybug, and share in our journey thus far.  We are who we are because of all of you.  I especially want to thank a dear friend Nicole. Nic, I’ve known you since we were “Rockin’ Robins” and am so grateful for the guidance you’ve given and the willingness to receive numerous text messages and emails before and during the process of becoming a foster parent.  Thank you.  xoxo

My favorite quote is about formula getting on the ceiling and being able to laugh about it. It’s nice to know we’re not alone in this.

Can you spot Ladybug in the video?

Official 2013 Feeding Tube Awareness Video

FEEDING TUBE AWARENESS WEEK!

Feeding Tube Awareness Week was first launched in February 2011 By the Feeding Tube Awareness Foundation.

Each year the week focuses on a few topic areas designed to give parents, caregivers and tube feeders the opportunity to share their experiences with tube feeding with friends and family through social networking sites, blogs, viral and traditional media. Increasingly, parents and siblings have been using Awareness Week to give presentations in their children’s classrooms.

Long before the CDG diagnosis came to light, Ladybug was diagnosed with failure to thrive. Failure to thrive (FTT) is a term given to infants and children who do not meet the growth rate that his or her peers meet. Yes, it is a bit of a generic description but one that we dealt with for quite a while. Basically Ladybug was showing signs of severe reflux or GERD(Gastroesophageal Reflux Disease), and was refusing to eat anything. It was at 1.5 months that Ladybugs first feeding tube was put in.  The lovely NG Tube (Naso Gastric) This tube runs directly from the nose to the stomach.

What started as a quick fix to help her gain some weight became an everyday part of our lives.  The NG tube truly was a lifesaver for Ladybug, and for the first few months she didn’t bother with it.  That is until she learned it only took a split second to pull it out. It didn’t matter how we taped it, what type of tape we used, or even how much tape we used, those teeny tiny fingers always managed to pull that tube out. After numerous trips to the ER to have the tube put back in, we began to discuss with the doctors about a G-Tube.  The G-Tube (Gastric Tube) is surgically placed into the stomach. Seeing as Ladybug still wasn’t eating orally and was beginning to throw up often it was the obvious next step.

The G-Tube was inserted in October 2010. Ironically this occurred the same month she had a GI bleed, bowel resection, port insertion and the CDG diagnosis.  October 2010 was a very emotional month to say the least.

Even though Ladybug is slowly starting to try food orally, sippy cup with water, Breton Crackers, squash and chocolate, the G-Tube is her sole source of nutrition. Thanks to the G-Tube and an amazing dietician, she is also steadily gaining weight according to her very own growth curve. The other great thing about Ladybug being a “Tubie” is that her best friend has one as well.  ”Bean” the other Diva of 3C at Mac Kids is always excited to see Ladybug and compare their identical feeding tube clamps.

Another tubie mom couldn’t have said it better when she posted that she would rather questions about our kiddies tubes than stares.  I truly LOVE when little kids look at Ladybugs feeding tube attached to a little backpack inquisitively.  I can only imagine what their honest minds are thinking.  I always give them a smile if only to let them know it’s ok to be curious.  The teacher in me can’t wait for a chance to explain what it is not only to the kids but also the parents.  If I can pass on anything it’s for adults to remember the inquisitive little child within. Don’t ever be afraid to ask questions – the majority of people are more than happy to answer them.

January 20th marks the
International Day of Acceptance.

A day to educate, shout from mountain tops (only if possible), tweet, blog, and create Facebook pages on how we can achieve social acceptance and awareness of disability. A day to honour the late  Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

According to the Oxford Dictionary, the definition of Acceptance is as follows: the action or process of being received as adequate or suitable, typically to be admitted into a group.   Adequate or suitable? Not exactly what acceptance means to me, and it’s not what acceptance means to the incredible people at 3E Love. Truth be told I much prefer the definition below.  

What is acceptance?

Acceptance is an Empowered movement that Educates others to Embrace diversity and Love life by seeing beyond abilities.  

Friends, tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living.

To our supporters, join us in telling the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else – you also have a role in our culture and life. And you can have an impact on the future if you demonstrate your acceptance to others.

Let’s join together to:
Embrace diversity. Educate your community. Empower each other. Love life.

This morning a friend forwarded this image, in light of a conversation we recently had. It is very powerful to me on so many levels, and is what many parents and children in the special needs community hope for – acceptance and inclusion.  Acceptance and inclusion not just for children in wheelchairs, but for all children who are perceived “different”.

Remember in elementary school playing a game called Red Rover.

One team stands at one end of the playground. The other team stand at the other end.
Everyone holds hands with each other to form a chain and stretches their arms out.
One team sings
“Red Rover, red rover who do you call over?”(and they swing their arms forward and back)
And the other team sing
“We call Sarah (or somebody on the other team) over”
After that, Sarah runs across the playground and tries to break through one part of the chain of arms.
If she breaks through she goes back to her team. If she doesn’t she joins the other team.
The winner of the game is the team with the most people on it.

If you’ve ever played you know that there will always be one person left on the weaker team. The last one picked.  Can you imagine how it feels to have been the only one standing there feeling lonely, sad, and left out.  Nearly every adult can relate to this feeling at some point of their lives. I know I certainly can.

This past summer I was part of a group message sent via a popular social networking site, inviting ‘all’ to a morning of fun with the kids at a splash pad. Initially I was ecstatic!  Not only because my little girl was being included in an activity that she loves – playing in water, but that she had the opportunity to be around children close to her in age in a non medical setting. It is such a warm, fuzzy, wonderful feeling to know that Ladybug was included. Now, I said initially because the message was sent to me by accident. It was intended to go to another mom and her daughter. An awkward case of adding the wrong person to the ‘all’ group with the same name.  Now I must add that this was not intentional, and the invitor did say sorry for the confusion.  I won’t lie or sugar coat it one bit though – that “OOPS”  hurt like heck, and all I could envision was my Ladybug out on that proverbial playground, alone, watching the other kids play.

Just because a child can’t do the same things your kids can, or is a little too “hyper” for a birthday party, take a step back and remember how you felt standing by yourself on the playground with everyone else united together.  I’ve grown up surrounded by friends and family in wheel chairs, or those who were developmentally delayed. For me it is second nature to always include everyone no matter what their abilities. I feel truly blessed  having these exceptional people in my life.

I’ve been talking to other parents both with and without children with special needs and how they would handle or react to their kiddos being left out. Here are just a few of the replies I received:

“Remove yourself and child completely from any social group not willing to include your child.” SN mom

“Set up your own play dates with other kiddos who have similar medical needs.” SN mom

“Throw a big summer get together and invite those moms and kids who never included your child to help break the ice. Plus it lets them see that just because our little miracles may not be able to walk, or talk, or see like your child doesn’t mean they don’t enjoy socializing with other children.” Mama of 2 healthy children and 1 SN.

Maybe it should be me as the parent of an exceptional child, to take the initiative and start a play group with children of different abilities. If only to show those folks that we’re (parent and child) not that scary.

What would you do if your child wasn’t invited to a birthday party or play date because they are “different”?   How do you handle it emotionally? Especially if your child has enough cognitive ability to understand they aren’t being included.  I’d love to hear comments from both sides. Parents of exceptional children as well as those with out special needs.

It was such a brilliant day for us. During an early morning trip to town several people commented on how adorable she is, then proceeded to ask “how old is she?”.  I’m not sure which filled me with more joy, watching the looks on their faces when I proudly proclaimed today she turned 3 years old. Or being able to proudly proclaim that my beautiful miracle is in fact 3 years old.

This birthday was incredibly special on so many levels.  Three was the age that Ladybug wasn’t supposed to live to be, according to some doctors. I’m happy to say that she is strong, healthy and thriving.  It also marked her “Champagne Birthday” meaning she turned 3 on the 3rd. To top it all off Ladybug got her very first haircut today. She loved every second of it and everyone at the salon treated her like the true princess she is.

I am so amazed at how far she has come and what she has achieved in these 3 years.  Her two most recent milestones include making wah-wah, guh, and the odd ma sounds, and drinking teeny tiny bits of water from a sippy cup.

Ladybug also attended her first “big girl” birthday party for her best friend who also turned 3. We had a wonderful time and Ladybug LOVED sitting at the craft table with all the other girls. I must admit it took all my strength to fight back the tears that day.  Just watching my princess do “normal” 3-year-old activities and be included was one of thee most incredible feelings I could ever imagine.

Not only have these kids been a HUGE part of our lives these past few years, their moms have become a very big part of my life. When you spend day after day in a little curtain enclosed space listening to pompous jr. residents, you need a buddy to vent to who knows exactly what you are feeling. These moms have helped me through so much and I don’t know where I’d be without them.

Over these past 3 years, I have learned that other parents of medically fragile/special needs children are far better resources than any other out there. Whether it be for suggestions on the best feeding pumps or emotional support – there is a real camaraderie amongst us.

Ladybug first met her BFF Bean when they were barely 2 months old. They were roommates on 3C in Mac Kids and very quickly became known as the little divas on the floor. It has been so amazing to watch these two grow up. Bean is very proud of the fact that her best friend has glasses and a clamp (feeding tube clamp) just like her.  The first picture is when the girls shared a hospital stay the 2nd time. The second picture is from the 3rd hospital stay together where us moms planned a photo shoot with the two girls to pass time. The last picture is from the girls recent morning out to Build-A-Bear. I have to say it was one of the best mornings out I’ve had in a while. Bean and Ladybug love each other so much and it was wonderful to see them interacting outside of a hospital setting. Bean’s mommy has one of the best sense of humours around, and is truly an inspiration. I love spending time with both of them. The best part for me was after our critters were created, we both brought the girls out to give meds and flush the g-tubes. I say this because it reassured me that I’m never alone in this. These moms are just like me, and I’m grateful to have been given the opportunity to have them in my life.

This is Zacky – he is like Ladybug’s big brother and just like Bean has been a roommate at Mac Kids. During Ladybugs most recent hospital stay Zacky stopped by to visit her. She wasn’t feeling well and was a little fussy, so Zacky began to sing Twinkle Twinkle Little Star to cheer her up. As soon as he started singing Ladybug perked up and began to smile. He is an incredibly special little boy who instantly wins over our hearts. Not to mention he has one heck of an amazing mama who has done a fantastic job raising this little man. The picture is an older one so I’m hoping to get some updates in December.