27 December 2014

#IMREADY - Changing the Face of Beauty

On November 1st, 2014, Changing the Face of Beauty launched a campaign encouraging everyone to call out their favourite retailers and asked them to include models of different abilities in 2015. 

When one sweet little girl graced the pages of Target's flyer, the world stepped up, sharing the flyer and picture. It went viral quickly, letting the world know that it's time to change the face of beauty.
People view beauty as the wide-eyed child, with perfect cheekbones, strutting their stuff in kiddie couture and trying to sell everything from fruit snacks to automobiles. The perfect child model does not include those with Down syndrome, autism, wheelchair bound or any other (dis)ability.

It's time for companies and magazines to include children of varying abilities. Inclusion and acceptance shows that you are a company that cares about all children. You respect families and are teaching the world that all children are worthy. All children are beautiful. All children need to feel loved, appreciated and respected.
When companies include children and adults with (dis)abilities in their campaign ads, you are taking a step forward, a step in the right direction.

Who decides what is beautiful?

When I look at Adele, I see total perfection. I see beautiful, almond shaped, blue eyes. I see perfectly shaped ears and sweet, full, pink lips. I see a smile that lights up a room. I see a cute, tiny little nose that is shaped perfectly for her face. I see this little being that is so full of personality and life. Adele is beautiful.

I want to see my daughter grace the cover of magazines. I want to see her representing clothing companies. I want to be able to tell her that the world thinks she is perfect and worthy enough to be apart of major ad campaigns. I want the world to tell her that she is beautiful.

The road for our children is not always paved in gold. There are many challenges and bumps along this journey. I believe that by showing equality and respect for all children, teens and adults, it is advancement and a positive move in the right direction.  

Share the post below on Facebook, Instagram, Twitter and Pinterest. Share this blog post! Let's change the face of beauty.

“Hey (your favourite retailer) #IMREADY for change.  We want YOU to include models of all abilities in 2015.  We want YOU to be part of the #15in2015 . 15 retailers including models of all abilities. It's time to step up. Let's see change. Let's see inclusion and acceptance."

21 December 2014

Christmas Unplugged

I was thinking about how I want to spend my Christmas. The past three weeks have been hectic, full of appointments and dates and outings with the girls. It's been a lot of go go go. I try hard to keep to a schedule with the girls and work at not depriving them of their naps. It is important for them to get the rest that they need and it keeps this momma sort of sane.

Having Adele, our world has truly changed. When people think about Down syndrome, they think of intellectual delays and that's it. It is truly so much more then that. I have two full binders filled with appointment forms, milestones, education, government links, mileage and parking forms, funding and so much more. She goes to ACH for hearing, vision and pulmonary appointments, plus we go for occupational therapy, physiotherapy and starting speech in the new year. It's a lot of work and dedication and making sure that she receives all of the care that she needs and deserves. While she is this small little being, we want to access all of the necessary services and supports so that she grows into a beautiful, strong and capable girl. We are busy. All of this hard work will pay off. All of this hard work is worth it.

Having Brinley means that she comes along for the appointments and participates in her sister's therapy. Brinley has become this caring and wonderful big sister. We have decided to access private therapy in our home and Brinley helps the therapist and her sister while we work on feedings and exercises for Adele. This kid has taught us so much about compassion and love. She is such a beautiful little girl. We are proud.

My point....our lives are so busy. I make sure that everybody gets the perfect gift, which sometimes isn't so easy because we are a one income household. There are six kids to buy for, both sets of grandparents, visiting relatives, James' work, all of our therapists, James and I fill each other's stockings as well as a few more gifts for others. Sometimes, I think that we have truly lost the real meaning of Christmas. We go out to the busy malls, with our lists and make sure that we get the perfect gift for each person on our list. We spend so much money every year and sometimes forget what it is truly all about. We put loads of gifts under the tree for our children and this sets the bar for future years. It gets bigger and more extravagant every year. You spend more as they get older and the demands get bigger.
I am guilty of this. Brinley will be three in March and as many of you know, she is obsessed with Minnie Mouse. We should have purchased some Disney shares, I'm sure that they are pleased with how much money we have handed over to them. I see something and I buy it. Brinley reaches her hand out and grabs something off of the shelf in WalMart, I buy it. I love buying her goodies and I love seeing her smile. We get the new Minnie toy back home, it is played with for a short time and then it is forgotten. I was pretty sure that this would have been her favourite toy.

What do our kids need? Our kids need love and for their parents to be present. Our children need for us to spend quality time together. Our children need for us to stop telling them "in a minute." I have told Brinley to give me a minute because I am sending an email or a text. I have actually told my child to wait because technology has sucked me in.....again.
Our children want us to sit on the floor with them and wrestle and make jokes and do arts and crafts. They want us to laugh with them and hug them and kiss them and roll around on the floor with them. We are teaching our kids that the bigger the birthday party, the better. The more kids, the better. The more toys at Christmas, the better. The more designer clothes, the better. We are losing the true meaning of how to properly love our children. Brinley and Adele are still at the age where we get to decide how greedy they will be in the future. I sometimes feel that I want the bigger and better, not because I am competing with all of the Pinterest moms, but because I think that I should be doing this for my children. I should have big birthdays, I should invite all of my friends, I should do all of this because this is what my children would want me to do.
Our children want their families together at Christmas time. Our children want us to put down our cell phones and IPads. Our children want us to play with them and laugh with them. Our children want us to sit together for Christmas dinner. Our children want us to be together as a family.

This Christmas, we are giving our children the best present ever. We are going to be present.
We are going to come together as a family and we will unplug. We will value these times. We will cherish these moments, while they are still little. These moments pass by quickly and we won't get them back. I want my children to know what is important in life and value the true meaning of what it means to be spoiled - health, happiness and family.


Side Note - our town was flooded in June 2013. Many families have not yet recovered and are still out of their homes. There is a huge need for gifts for children. I know that the deadline has passed, but if you are out this way, I'm sure that they would greatly appreciate a toy for a child in need.
Salvation Army urgently seeking Christmas hamper donations

15 December 2014

And the Winner Is.....Lysol


Well, it’s cold and flu season! Since Adele, life has changed dramatically when it comes to germs and viruses. Our family is very cautious because Adele does have a more fragile immune system and her muscle tone is weaker than a typical child’s immune system. Hypotonia has some negatives aspects, in that it is more difficult for Adele to move secretions through her body and because of the smaller nasal passages, she gets the sniffles more often. 

It is imperative that as a family, we work diligently to keep both Adele and Brinley as healthy as possible. When a two and a half year old gets sick, the rest of the family, including Adele is next on the list.

We are a Lysol [http://www.lysol.ca] family. I believe in Lysol. I stand by Lysol and you can find their products as soon as you walk in our door. 

When we have guests come over, it’s to the Lysol Hand Soap dispenser they go. We try to make it fun for Brinley, so we bought the Disney Princess dispenser and when she gets home, she goes straight to the sink and asks for her hands to be washed. We all know that Lysol kills 99.9% of germs and to our family, this brings reassurance that during the cold and flu season, we are protecting ourselves and those who come into our home. 

After the girls go to bed, I get out the Lysol Disinfectant Spray and use it on the hard surfaces in our home. I also spray it on all the doorknobs and on James if he gets in my way. I need to know that my husband is 99.9% disinfected. :)

Our next challenge with Adele, besides working on our immune system, is her poops. The poor girl struggles with getting out a nice sized, soft poop. Well, we decided that she needed a little extra help and what we like to call, additional loving. We bought a poop aid! We are still trying to figure out what amount will work best for her little system. We don’t want solid, we don’t want runny, just a nice pooping experience for our girl. 

Well, the other day, she had a blow out. She got rid of dinner from the night before, right up until dinner that night. It was frightening. :) 

I changed her diaper on the mats in the living room and well, she is so squirmy and out of control, there was poop on the mats, poop on me, poop on her, poop everywhere. I grabbed the Lysol wipes and went to town. I thoroughly disinfected the entire area. Adele spends a lot of time rolling around on the mats and playing with her toys. I needed to make sure that we were fully sanitized. I came close to scrubbing her down with the Lysol wipes, but opted for a bath instead. ;) I need to know that my children are in a home that is clean, sanitized and fully disinfected. I am confident that their products are safe to use where my children play and I am confident that it has helped our family keep healthy and well.

I know that a lot of families don’t think twice when their child gets a cold. It comes, it sticks around for a while, gets passed around and then it’s gone. The thing is, when your child gets a cold and you bring them out in public around my children, chances are pretty good that we will end up in the hospital. Adele’s system is not the same as your child’s immune system. Our ultimate goal is to keep both girls healthy and happy. 

I challenge families to go out and buy some Lysol products and test them out for a period of time. See if your children miss less time from school. See if you miss less time from work. We all want our homes to be safe and protected from colds, the flu and viruses. Taking the time to sanitize is worth it for the health and well-being of your family. 

Keep your family healthy this holiday season and save with this coupon for $1.00 off any two Lysol products [http://www.lysol.ca/illness-prevention-1/cold-flu/].

This post was brought to you by Lysol, but the images and opinions are my own. For more information, please visit www.lysol.ca.

13 December 2014

"I'm Sorry That Your Baby Has Down Syndrome"

You've just received a pre-natal diagnosis. Your doctor tells you that your unborn baby has Down syndrome. The doctor says "I'm sorry" and sends you on your way with some statistics and a pamphlet. Your head is spinning. Your hopes and dreams just came to a halt. Your heart hurts. You are desperate to hear the words "it will be ok."
You don't know where to go or what to do. You don't think that you can do this, you couldn't possibly raise a child with special needs. You aren't strong enough. You weren't meant to be in this position. You aren't too sure where you went wrong. You cry, you cry so hard and you feel sorry for yourself. How do you tell your friends and family? Will they judge you? Will they accept your child?
You go home with your husband, you read the pamphlet, it looks grim. How could you possibly move forward?

You've just received a pre-natal diagnosis. Your doctor tells you that your unborn baby has Down syndrome. The doctor says "congratulations to you and your husband. I understand that this is difficult news and you are probably feeling overwhelmed. I am here to support you and answer your questions. It will be ok."
Your doctor provides you with some community supports and some resources that will help you on your journey. An appointment is set up for you to meet with a genetics' counsellor. You have been given contact information for your local Down syndrome association. You feel overwhelmed but you also feel supported and cared for. Maybe you can do this. Maybe you and your husband can embark on this journey with confidence and positivity.
You cry because you are scared but your doctor just reassured you that it will be ok.
You go home with your husband, you look through all of the supports that are available to you and your family, you feel reassured. You can move forward.

These are the two scenarios. There are two outcomes which are very different. We move forward. We don't move forward. There is not enough education out there. There is not enough support from medical professionals. There is not enough care and compassion for parents who receive a pre-natal diagnosis. Those first words can change the future for this family. Things need to change.

You are ready for the arrival of your baby. Your beautiful miracle is welcomed into the world by the doctors and nurses. You hear the words "I'm so sorry, but your baby has Down syndrome."
There must be a mistake. There were no markers. There were no issues. You had a perfect pregnancy. Why didn't they detect this, this is their fault. You tell the doctors to take your baby away. You are not equipped mentally to deal with this right now. You cry. You know that this was not supposed to happen. There is nobody there to support you or to provide words of comfort and encouragement. The doctors leave the room and you are left to drown in your own misery. There is one nurse who holds your hand, she tries to comfort you, but you are too upset to listen to her words. They are meaningless.

You are ready for the arrival of your baby. Your beautiful miracle is welcomed into the world by the doctors and nurses. You hear the words "congratulations, look at your beautiful and perfect baby. We have carefully checked her over and have come to the conclusion that she has Down syndrome. I understand that you are feeling overwhelmed right now, can we offer you some support? Would you like to meet with the social work department? With a pastor? Please let us know what we can do to help you and your husband." The nurse holds your hand and shares words of encouragement and support. You feel overwhelmed but you also feel hopeful. The doctor smiled when you were handed your baby. I'm sure that we will be ok.

In the past year, I have heard too many negative stories from new moms. The way that the news is shared with families influences the decisions that they are going to make regarding their unborn baby. The way you welcome this baby into the world, this is what the family is going to remember for a lifetime.
There needs to be more education. There needs to be more compassion. Doctors and nurses need to be properly trained on how to deliver the news.

The phone rang, I was told that we had a 1:2 chance that our unborn baby would have Down syndrome. I was left crying. She filled my head with test options and then said goodbye. The news came as a shock and was delivered in a way that was unprofessional and upsetting to myself and our family. We didn't think that we could move forward.

When we received the news from my OB that our baby had Down syndrome, she talked us through it. She held our hand. She cried with us. She understood and gave us guidance. When we met with the doctors at The Foothills Hospital, we never heard the words, "I'm so sorry."
We were told the facts and we received the care that we deserved. We knew that we could move forward.

The world needs to change. The termination rate is high.

More women aborting & continuing Down syndrome pregnancies

This is an interesting article. Take the time to read it.

1 December 2014

Dear New Mom....Love, Krista

In the past few weeks, I have handed out three baskets. Three different journeys, three different stories. Each basket that I deliver, I go in with an open mind, the way they are received, each situation has been special and unique.

Today, I received a text from the social worker at the hospital. You just delivered your baby. Your perfect baby was placed in your arms. You cried tears of joy. You hugged your husband, you are prepared to start your journey. The nurse takes your baby away and when she returns, she tells you the news. Your baby has Down syndrome. You are shocked. Your eyes fill with tears, no longer tears of happiness, but tears of upset, sadness and fear. You feel like your hopes and dreams have been shattered. Your husband is your rock, he strokes your hand but he has no words. He feels broken, his brand new baby boy is no longer perfect. He holds it in because he is there for you. He can not tell you that he feels lost.

I am at home putting together the most perfect basket for you. A basket that is filled with baby items sent to me from all over the world. The basket contains books of happy, uplifting stories that you will read once you are ready. There is a journal for you to chronicle all of your thoughts and fears and a list of resources, so that when you leave the hospital, you will feel prepared and ready to begin this beautiful journey. I was once there. I didn't receive a basket. I didn't receive a list of resources. I was trying to remember the links, who to contact and I was trying to keep all of the pamphlets organized so that I could learn more about Down syndrome, our new world. I knew before my baby arrived that she had Down syndrome, but I still didn't feel fully prepared.
You didn't know that your unborn baby would have an extra chromosome, but now you do and you don't know where to start. Your world comes to a screeching halt.

I am on my way with your basket. The memories come flooding back but I am looking forward to meeting you. I won't tell you that it will be easy. I won't tell you that you will not be faced with some struggles. I won't tell you that the road ahead will be smooth, no bumps and no upset. I will tell you that this is your baby. I will tell you that there will be moments that will fill your heart with so much joy that Down syndrome will take a backseat. I will tell you that sometimes it's overwhelming and you need to stop and take a deep breath. I will tell you that your baby will look like you and act like you. I will tell you that milestones and tiny moments will make you smile. I will tell you that you will love this baby with every ounce of your being and your world will be become a better place.

I arrive at the hospital. You and your husband walk in the room. You are young. Your husband looks at me and tells me that he's going to hug me. He puts his arms around me, places his head on my shoulder and he cries. Two strangers, meeting for the first time, who share a common bond. You cry when you see your husband show his emotions and tell me that this is the first time that he has shed a tear. He felt that this was his time, his time to share his worries, concerns and to allow a stranger to be his rock.
We sit and talk and before I walk out of the room, I tell you that it will all be ok. It will be ok.

* I included a picture of a sweet baby boy who was the recipient of a basket. This blog post is not about his beautiful family.

* Thank you to all of my friends and family who have travelled this journey with us. I am blessed and thankful. Thank you for your love and support. 

19 November 2014

"That's So Retarded"

Before Adele, the word 'retard' didn't mean all that much to me and I probably wouldn't have gone out of my way to correct somebody. I may have given them a dirty look, but would not have approached them and told them that I am disgusted by their choice of words. It is not a word that I ever used, because I found it to be disrespectful and hurtful and as I travel this journey with Adele, I find that it is used by many in everyday conversation, used without hesitation.

Since Adele, this word has a whole new meaning. When I hear others use it, I let them know that it hurts and make it known that you sound uneducated and ignorant. There are so many other words you can use instead of 'retard'.
I've had some friends tell me that they aren't using it to describe Adele or other children, but are using it to let others know that they are being stupid or dumb. Hmmmmm......
This is the thing, the word has only one meaning.

Delay or hold back in terms of progress, development, or accomplishment.

It is a word that has been used to describe our children and at one point in time, it was widely accepted. The medical profession used the word to label those with intellectual and developmental disabilities. Over time, the usage of this word has dramatically changed. It is used as slang and used to insult others. It is hurtful.

When you say....
"I was so drunk, I was retarded. It hurts.
"Stop driving like a retard. "It hurts.
"You're acting like a retard." It hurts.
"My kids are acting retarded." It hurts.
"What a retard." It hurts.
"Oh my gosh, that is so retarded." It hurts.
"When you talk like that, you sound retarded." It hurts.

John Franklin Stephens, a man from Virginia with Down syndrome who serves as a “global messenger” for the Special Olympics. He has written op-ed articles giving lucid voice to thoughts you may never have heard before:
“The hardest thing about having an intellectual disability is the loneliness,” he once wrote in The Denver Post. “We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘unh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.”
“So, what’s wrong with ‘retard’?,” he asked. “I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the ‘in’ group. We are someone that is not your kind.”
(The New York Times)
Recently, a new friend posted a picture of a book on his Facebook page. It was called, Helping The Retarded To Know God. It was posted to entertain his friends and to strike up a conversation with others. The comments were mostly geared towards how ridiculous the book is but there was laughter and it provided entertainment for others.
I left a comment. It was to the point. I told him that it hurt my feelings that this was used to make fun of those with intellectual disabilities. I also included a picture of Adele. I have to be honest, I was mad. I felt like I had been disrespected.
He sent me a message....
It was intended to mock the people who made that horrible book, but you certainly are right, this is not something you should joke about and I am very sorry for that. Sometimes you just forget and mock something while hurting others instead.  It takes people like you standing up and saying what you did to really make people think, certainly did for me, quite profoundly. I felt horrible and ashamed after that, I would like to think I'm above being like that, sadly that was a tough lesson to learn. Again, please accept my apologies, it is so far from my nature to be hurtful and I will not make that mistake again. Thank you for calling me out on that!
I said something. That's all I needed to do. Did I take the chance of him coming back and berating me? Sure. I don't care. It is imperative that I speak up on behalf of my daughter and for all of those of varying abilities.
This is the thing, I am on a mission. I want to change the world. Sure, it's a big job, but all it takes is a small act every day. I need for my friends and my family to call others out. I need for you to stop using the word, stop making excuses as to why you use it. It doesn't make it any better. Some of you may think that I am over-reacting or a bit dramatic, but this is the thing, this is my life, this is my journey, Adele is my daughter. At some point in her life, she will be called a 'retard', and it will hurt her. It will hurt her family. I am going to work my hardest to pave a smooth road for Adele. I am going to be her strongest advocate, but I need your support.
Spread the Word to END the Word.

8 November 2014

Today, I Accepted That My Child Has Down Syndrome

I thought I had accepted that Adele had Down syndrome. I thought that during the 20 weeks that we had to prepare before her birth, this would give me the right amount of time to digest the news and accept that our journey would be so different, more obstacles, more tears, more upset. We had so much time to prepare, but I wasn't ready and I don't think that I had truly accepted that Adele had Down syndrome.
My love is unconditional. That has never been a concern. I love Adele will every ounce of my being, but I'm not too sure if I was ready to have a child with Down syndrome.
As I travel this journey, I am finding out new things every day, some are amazing and some are more difficult to deal with. It's not just about the delays, it's about the appointments, the added stress and heartache that comes along with Down syndrome. It's about all of the medical concerns that she gets to face because of this one extra chromosome. The journey with Down syndrome is different, we have this amazing tour guide, who is taking us on a more scenic and beautiful route. It's not the route that we expected, but that's ok, it's the route filled with such picturesque scenery and unwavering love.

While writing this post, I cried. I cried so much, that I needed to stop and take a break.

I woke up this morning and I felt like a weight had been lifted off of my shoulders. I don't know why. Every morning, when I wake up, I look into Adele's crib and she looks up at me with her big blue eyes and she smiles. She smiles so big that it warms your heart. This isn't because of Down syndrome.
Every day, she plays with her sister and gets sad when Brinley isn't around. This isn't because of Down syndrome.
Every day, she works hard to achieve milestones. This isn't because of Down syndrome.
Every day, she wants to be snuggled, fed, loved and talked to. This isn't because of Down syndrome.
Adele does all of these things, because she is 15 months old. She does all of this because this is what babies do.

I woke up this morning and for the first time, I am living for today. I am enjoying the moment with my daughters. I am not feeling the stress of the years to come. I am not dreading school years with Adele. I am not worried about the birthday parties, the bullying, the medical concerns.
Today, I woke up and realized that before me, God has given me these two little miracles who have so heavily impacted my life for the better. I am thankful for their laughter. I am thankful for their smiles. I am thankful that I was chosen to be their mommy. I look at how wondrous these two little beings are and how James and I, out of love, made pure perfection.

Today, I am savouring the moments and not focusing on tomorrow, the tomorrow that isn't promised to any of us. I am loving the time with my family. I am listening to my children's laughter. I am not focusing on the things that I think I could do better, instead, I am telling myself that I am a great mom. I am telling myself that I am working so hard to ensure that my children feel loved and accepted. I am telling myself that James and I may not always be consistent with therapy and rules and consequences, but we do the best that we know how. We wake up every single day and love these girls. We nurture them, we read to them, we sing to them, we play games with them, we take them out to fun places, we tell them all of the time, just how proud we are of them. We were given two little miracles who I know in my heart, will make a huge difference in this world.
I am no longer going to get down on myself because I think that I should be doing more. I should be a better mom. I should focus on therapy more. I should be doing what other moms are doing with their children. I will not feel that I need to compete with other moms. The other day, a friend told me that I was a phenomenal mom. She doesn't realize just how much those words impacted me. At best, I have felt that I am just keeping my head above water, then you call me phenomenal. That day, I felt a shift, a positive shift. A shift in the right direction.

My world changed overnight and I don't know why, but I am so glad that it did.

When you have children, I don't think you ever really know what you are in for. I don't think we truly know what being a parent entails. You have a baby and you think of the joy and love that this child will bring to your life, you don't think about that there may be a difficult journey ahead of you. The future is unknown. What tomorrow brings, we don't know, but what I do know, is that I have been given this moment. I have been given this moment, that I can spend with those who matter most. I am not going to think about what I should have done differently yesterday, I am going to think about what I will do better today. I am going to enjoy that Adele sits up all on her own now. I am going to enjoy that Adele now waves 'hi' and 'bye'. I am going to enjoy Brinley's facial expressions and her love and excitement for life. I am not going to stress about the amount of TV time, the 2 lollipops, the lack of fruit at lunch. I am going to keep loving these girls, keeping them safe and protected and continue to be the mom that they need me to be.

I am telling all of my friends, you are doing a great job. You are an amazing mom. When you start feeling down, when you start questioning whether or not you are a good parent, slow down, take a breath and look at your child. You are worthy. You are amazing. You are doing your best.