7 February 2015

Shame on Dad?



Well, the articles have gone viral, everybody throws in their opinions and the attacks on the mom are wicked and cruel.
I always jump on board when it comes to ignorance surrounding Down syndrome. I automatically assume that what the media is telling me, is accurate and truthful. I have learnt from past experience that the media twists and turns the stories to make them more attractive to readers and viewers.
After reading numerous articles, I decided to sit back and think about both sides, what was going on in mom's head and how dad was feeling at the time that he was told that he would be raising his son on his own.
Today, mom hits back at father's claims and denies the allegations.

The world has attacked this mom on social media sites all around the world, meanwhile, we have only read and watched dad's side of the story. I have to admit, mom really didn't make herself sound that much better in her article, but at least she came forward to share her version.

This is how I see it.....

We have all given dad this big pat on the back for keeping his son. Wow, a father who wants to keep his newborn son, who has been diagnosed with Down syndrome. He is a saint. What a stand up kind of guy. He deserves a medal for wanting to actually raise this boy who will be a lot more work than a 'typical' child. Why are we doing this? Why are we giving him so much praise and support when he is doing what he should be doing. Nobody ever said to James that he was an amazing father for staying with me after we gave birth to Adele. Nobody patted him on the back or whispered in his ear that they were floored that he stayed and that he didn't go running.
He is Adele's daddy and Brinley's daddy. He has a job to do, which is to take care of his wife and children. We all take care of each other.


The other thing, I was taken aback that a Go Fund Me page was set up so quickly. Where was my fundraising page? Nobody stepped up and said "it's going to be work Krista, here is some money." In 11 days, he has raised almost half a million dollars. Now, Samuel promises to give back to orphanages and to help those with disabilities, so that they have a more promising future. This is not how the world works. What is happening? Mom gives birth to baby with Down syndrome. Mom runs. Dad sets up Go Fund Me page. Dad makes a whack of money.

Little Leo has Down syndrome. Why is the world treating him like he has a life threatening disease? The world sees Down syndrome as something so horrible, so much more work, that the only way that dad will make it through this, is if we all donate money and bash mom.
If Samuel has plans on moving back to Auckland, he needs to contact his local Down syndrome chapter, find out about services and resources in the community. He is Leo's dad. This is what a parent does, they take care of their child, they love their child and they do whatever is possible to ensure the health and safety of the child.

The mother.....

After reading numerous articles, I have come up with one conclusion, mom is uneducated when it comes to Down syndrome. The doctors provided her with such a grim picture. They felt sorry for her and gave her the option to run. They didn't walk into her room and congratulate her, they didn't give her a hug and tell her that it would all be ok and that they would provide her with the necessary supports. They made Down syndrome sound like it was a curse, it will ruin her life and that the future would be dismal and full of upset.
What would I have done? I don't know to be honest. Those first words are the most important words that a mother will hear. Those first words that come out of the doctor's mouth, sets the tone for how a family will proceed; with confidence or with fear and worry.
Why is this happening in our world today? There have been huge advancements in medicine and technology, why can we not fix this? Why are doctors not educated on how to deliver the news that a new baby has Down syndrome? Why is there still so much shame and ignorance surrounding Down syndrome? There needs to be a shift and it needs to happen right away. I feel sorry for Ruzan Badalyan. She was robbed of the excitement and joy of having a brand new baby. How wrong. I blame the doctors and the nurses. I blame them for not doing their jobs properly. They should be ashamed. I also put blame on the mother for not seeking support, for not wanting to be educated.


None of us know the real story. None of us know if the marriage was falling apart long before the arrival of this beautiful miracle. Instead of criticizing and spitting venom at this mom, let's spread awareness and continue to educate the world. Let's change how the news is delivered. Let's jump on board together and show others that this journey is beautiful. This journey is rewarding and full of blessings and joy.

A sweet little miracle named Leo was born.

The littlest feet make the biggest footprints in our hearts. (unknown)


 

3 February 2015

Talking To Your Child About Down Syndrome


Recently, a few friends have asked me how they should explain Down syndrome to their child. This is only my opinion, it may not work for everybody and not everybody will agree. I am very open to discussion and love when others come up and talk to us about Adele.

When I explain Down syndrome to younger children, I try to keep it fairly simple.

Down syndrome is not a disease. You can not catch it. It is a chromosomal condition.

We have 46 chromosomes...they make up who we are as people. Mommy and daddy both 'give' us chromosomes, we get 23 from mom and 23 from dad. These chromosomes decide how we develop and grow, how we act, if we will look like mom or dad. When talking to your child about Down syndrome, some won't understand your explanation on chromosomes and that is ok, it's not the most important part about Down syndrome. :)


Adele has 47 chromosomes. This one extra chromosome gives her some extra special gifts.

Her eyes are almond shaped, her nose bridge is flatter, her ears are smaller and lower-set, her mouth is shaped differently, her tongue is a bit bigger, she has a smaller mouth and her palette is shaped differently, this affects her speech. It might be harder to understand her not because she doesn't know how to talk but because she lacks some muscle strength and the inside of her mouth is shaped differently. She will do all of the same things that you do, but it's going to take her a little longer....sitting up, crawling and walking. Because of her extra chromosome, she is a bit floppy, like a rag doll, so crawling and standing are a little more difficult, but she'll get there. She needs to work on getting stronger, we do this with the help of some really great people. Adele does some special exercises that help with her strength and her speech. When you go skiing, or play really hard or have a big long game of hockey or soccer, sometimes your muscles feel a bit weak and you feel kind of floppy, this is how it is for Adele, every day. She just needs some time.
She will love the same music as you and will like sports and gymnastics, just like you.
She has feelings, just like you and she will love playing with her friends and laughing at silly jokes. Having the extra chromosome, doesn't make her any less of a person, she's just like you, she just has to work a little bit harder at some things. Some school subjects might be a bit more difficult for her to catch on to and some will be a little easier. Maybe math will be harder for her to understand because the numbers might be confusing, but she may write really great stories in Language Arts class.


It's ok to look, I do too and it's ok to ask questions. I like it when you come up to me and ask questions about Adele. It's important to ask when you don't understand something, we do this in school all of the time. When you are confused or you need more clarification, you ask your teacher for help. This is how I feel when it comes to Adele, just ask me. I will answer your questions and hopefully help you to understand why Adele has some extra special gifts and how they affect her day to day life. Always remember that different is beautiful. We were all made to not look like each other. We are all unique. If we all looked identical or if we all liked the same subjects and played the same sports, life would be boring. 
Children and adults with Down syndrome are just like you and me. We are all beautiful, we all have our own gifts, talents, weaknesses and strengths.


Be kind to each other. Be a good friend. Include others.


*** If you are in the Calgary area, this is going to be an awesome event! I'll be there! :)
 
 
I made this brochure last year for World Down Syndrome Day. I'm sorry that it cuts into the side bar if you are viewing on your laptop. I needed to make it big enough. :)
 


1 February 2015

Our Mighty Challenge.....


THE MIGHTY CHALLENGE

I want to invite you to participate in our February challenge. We’re asking our readers and bloggers to do the following: Write a note to a stranger, or someone you don’t know well, who showed you incredible love.

I thought long and hard about who I would choose. This was difficult because we have met so many incredible people along this journey. I chose to write my letter to Karmen, we know each other but not very well, but what I do know, is that I love her. Our world changed that day. The most important thing when a family receives a pre-natal diagnosis is that they get connected with a family who is on the same journey. Get support. Get educated.

Dear Karmen,

We had just received our pre-natal diagnosis. We were letting emotion take over logic. We were in a place of uncertainty and fear and worry. You reached out to us, invited us over to your home and you were kind enough to share the journey that you have been on with Carson. We walked in and you gave us a hug; you made us laugh and introduced us to your husband and your sweet little peanuts, McKenna and Carson.
Carson was in the middle of a therapy session and I remember thinking, he needs occupational therapy? He needs physical therapy? He needs speech therapy? I could feel myself getting overwhelmed. At the time, all we knew was that children with Down syndrome had developmental delays. We didn't know about hypotonia. We didn't know about the vision, hearing and pulmonary appointments. We were lacking knowledge and awareness.


We went upstairs and I soon came to realize that you and I are were really alike and that Joel and James had similar personalities. We are the lack-of-filter wives, who tell it like it is and our husbands are a bit more calm and relaxed and use their filters when needed. It was a match made in heaven. :)
You were honest and real with us. You were calm and relaxed and non-judgemental. You gave us a picture of love and reassurance not one filled with grim statistics and upset. You told us that you would support us along our journey and that you would guide us to a place of comfort and love. You talked about Carson's appointments and that the journey with your son has been filled with joy, mixed with some bumps in the road. You were honest and we appreciated it.
Our time at your house was filled with mixed emotions. We felt confident and then scared and wondered if we could be amazing parents to this little being growing inside of me. We felt uneducated and fearful if something went wrong during our pregnancy. We felt happiness that Brinley would have a sibling but would they love each other? Would they be close? You answered all of our questions. You told us your reality. You told us that the journey is beautiful and rewarding. You knew that our baby would be loved and that she would change the world.
As we sat on your couch, our worries began to dissipate. We felt support from a family who barely knew us. We felt like we had connected with a family who would hold our hand when we needed it. We felt the sadness start to lift. We felt the need to continue to educate ourselves and to make sure that we did everything possible to keep our baby healthy.


Before we left, you gave us a video called Deedah. We didn't watch it right away. We needed to process and think about the journey ahead. When we finally sat down, we watched it together. We smiled, we laughed, we cried. We closed that door of uncertainty and opened the door that was filled with hope and love and celebration.

Thank you for giving us your time that day. Thank you for not judging us and for accepting our fears and worries. Thank you for letting us know that there is support. Thank you for hugging us. Thank you for being the voice of reason that we needed. Thank you for allowing us to express our concerns. Thank you for letting us walk out of your house that day feeling that we were not alone.

Love,
Krista

27 January 2015

Dinner For Four

 

Well, it’s dinner party night at the Collins’ house. I am ready to host my husband and two children. That’s the extent of the dinner parties at this abode. It starts off with the planning stage.

 What to eat?

Let’s go with fancy tonight, spaghetti and meatballs. I know that I am setting myself up for stains. There will be stains on faces, couches, clothes, on the carpet and on Adele’s high chair. I know that I will cringe when I see the meatball hit the ground and I will point a finger at James when his children destroy my kitchen and living room with tomato sauce and oversized meatballs.

The bibs go on. Bibs usually get ripped off immediately. This mom knows that a spaghetti bath is imminent. The girls look at each other, it’s like they are joining forces, coming up with a plan to cover the entire main floor in spaghetti.

Adele is now at the stage where we allow her to try to feed herself. As parents, we need to take a step back and allow her to figure out how to get the food from her plate, into her mouth. This mom would love to place her children in full bodysuits at every meal, but it’s not practical. Meal times are a mess.


The spaghetti food fight begins. Adele loses seven out of the eight pieces of spaghetti; they end up down her shirt. It WAS a nice, clean and beautiful pale pink shirt, now I’m wondering how to remove the red tomato sauce stains, instead of enjoying my meal.

Brinley is becoming more independent and likes to use a spoon. It usually goes a little like this:

 Grab spoon.

Manhandle food.

Place food on spoon.

Food falls on couch.

Food falls on shirt.

Food falls on pants.

Food falls on carpet.

Repeat.
 
We have learned that we need to go with it. We need to relax. We need to let these girls figure out how to feed themselves without mommy and daddy making gasping noises when a meatball hits the ground, or a string of spaghetti gets flung across the room. We are learning that meal time needs to be a relaxed and enjoyable experience, with laughter and conversation.

I have thrown out clothes because the stains were permanent and some have turned into rags, which James now uses in the garage. I have used bleach and stain removers which are considered top name brand products. Products that are guaranteed to remove stains. They didn’t work.
So, this momma did some research.

I found one! I found the product that removes stains and whose reputation surpasses all others. OxiClean Versatile Stain Remover. http://www.oxiclean.ca/Products/oxiclean%C2%AE-versatile-stain-remover-powder/ This stuff is a miracle worker. It removes everything. If you are a mom or a dad and you have children or throw dinner parties, this should be your centerpiece. I’m not kidding. The original oxygen-based stain remover has over 101 uses on multiple surfaces like carpet, upholstery, kitchen and bath surfaces, and even works outdoors on gutters, unfinished decks and patio furniture.
 
 
I no longer throw out clothes. I no longer stress about stains on clothes or carpet and when the family eats spaghetti, I’m not worried. We are a stain free household, thanks to OxiClean!


BEFORE
 
 
 
AFTER
 
 
OxiClean is available across Canada at Shoppers Drug Mart and Walmart. Check out their Facebook Page for more tips and tricks.
This post was brought to you by OxiClean Versatile Stain remover, however the images and opinions are my own. For more information please visit http://oxiclean.ca/.
 
 

 

21 January 2015

A Day In The Life Of A Mom And A Special Moment



A day in the life of a mom......well, just a small part of the day....like a few hours. :)

We were up at 7:30am, which really is a decent time. Brinley always crawls into bed with me, we snuggle and we wait for Adele to start tooting and calling for dada. I get out of bed, kiss Brinley, hand her the IPad, rub Adele's head, tell her that I love her and get in the shower.
Once I'm out, I give Adele a book and Brinley is usually singing the alphabet song and I keep getting ready. We have a routine and we stick to it.
Once I'm looking presentable, I get the girls dressed and ready for the day. We eat, we laugh, we hang out. It's our routine.

Today, we decided to go to Target and were hoping for some awesome deals. We got daddy to meet us there so he could help with crowd control. I was picking up some socks for World Down Syndrome Day. Last year, I went into the local elementary school to do a bunch of presentations on Down syndrome. I have a question and answer period at the end and hand out funky socks. The whole point is to teach children that we are all different, we are all unique and we all have our own strengths. The students are so responsive and respectful towards Adele. I love the innocence.


The Target visit went a little something like this.....
"Brinley, stop rolling around on the dirty floor."
"Brinley, where did you go?"
"Brinley, put that down."
"Brinley, I'm losing my patience."
"Brinley, do you have to pee?"
"Brinley, I'm going to leave you here, in Target and mommy is going to go for coffee somewhere, with your well behaved sister."
"Brinley...Brinley...Brinley....Brinley...."

Brinley now has pink cheeks from running through the entire sock section and from rolling around, kind of like how a sniper would manoeuver through the bushes, she was doing this around the racks. Although she had some stealthy moves, wrong place, wrong time."

I decide that I will ignore the situation. Pretend that I do not know this child.

We get to the till with around fifty pairs of funky socks. Brinley starts grabbing them, tossing them, yelling at her father, I am still pretending that I have no idea who this child is or who she belongs to. Not my problem.
James picks her up, she goes all limp, then stiffens her body and yells and kicks. James uses his quiet whispering tactics. I think he threatened her with no dinner or something.
We are at the self serve checkout, I am rhythmically scanning all of the socks, singing happy songs in my head. One pair won't scan. I want these socks. Brinley is yelling.
JUST SCAN! JUST SCAN!! After fifty attempts, it works.
"Brinley, put your coat on."
"NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO."
It's not like it's really super cold out. She will survive. I'm sure other moms do this all of the time. Whatever.


By this point, James is excited to be heading back to work.

We get the girls in the car, I yell over Adele and give Brinley the mom eye and all is quiet.

Three hours before this, I drank my Isagenix shake. Three hours after the shake, I was  craving rum or McDonald's. I haven't had McDonald's in almost a year. I knew that I couldn't get hammered, so we called auntie and she met us at Wal-Mart.
Target, and now Wal Mart. I feel classy today.

We meet auntie and we head up to the till. I start feeling guilty. I feel my butt expanding and my tights getting tighter. I reconsider eating fried food. I am staring up at the menu board and think about a salad. I think about a smoothie. I think about how I will feel within fifteen minutes after eating McDonald's.

I push those thoughts out of my head and order Brinley a meal, momma a meal and auntie settled on poutine. We are going to sit down, eat a 'nice' meal together and not feel guilty.

We get settled and auntie's phone rings. It's the groomer. She was on her way to the vet because she cut off almost the entire bottom half of Bacchus' ear.

Auntie leaves so that she can meet the groomer at the vet. Mommy feeds the children.

I remember that Brinley hasn't gone to the bathroom in a couple of hours. I dread going into the Wal-Mart bathroom. I sit and wonder if I can avoid it. Does it really matter if she pees on the car seat? Yes, it matters.
I clean off our table and make our way to the bathroom. I tell Brinley that if she touches anything, she will never get a potty treat again. I whip out the potty seat, Brinley sits down and pees. We are good.
When I flush the toilet, Adele gets scared and starts crying. The cries are echoing and bouncing off the walls in the bathroom.
We exit and hand sanitize Brinley.....all the way up to her elbows.

She starts grabbing her pants, between her legs and tells me that she needs to go potty again. Are you kidding me?
We go back in, get out the potty seat, pull her pants down and she's wet.
A good mother would have taken off her panties and pants and put her in a new set. I am not that good mother. I put her back on the potty, she doesn't need to go.
I pull her pants back up and have enough common sense to not flush the toilet.

We go back out and sanitize again, all the way up to the elbows. 

I think when I get home, I should have a rum n coke.


I see an older lady staring at Adele. Not a happy stare. No smile, just staring.
In my head..."oh forget that lady, you are so not going to ruin my day. I dealt with somebody like you the other day and I just managed to pick myself back up. You will not stare at my daughter, you will not treat her like she is anything less than a perfect, little miracle."

Yes, all of this was  going on in my head.

After our incident on Monday, I didn't want to go anywhere on Tuesday. I didn't want to face anymore stares. I didn't want to face anymore ignorant people. I didn't want to have to deal with those who chose to walk up that morning and be an ass. It was a difficult day because I have never experienced these feelings before. I didn't want to take my child out in public. It was a sad day.

As I looked back at this woman, I thought, it's ok, you don't know us. You don't know my child. You don't know what you are missing. You don't know our story, our journey.

We headed out to the car and a man walked passed me, he was smiling, he was handsome, he had kind eyes. I was looking at him. I was smiling. He has Down syndrome.
His smile was so sincere and genuine. His presence was beautiful. He brought this sense of peace to me at that very moment. I needed to feel this. It was like he was looking at me and reassuring me that it will all be ok. It will all be ok.

19 January 2015

Not A Good Day....


Today started off pretty great, then it went downhill.

I decided to take the girls into the city to meet James for breakfast at Tim Horton's. We've never done this before and our only others plans today are for the girls to get their hair cut.

We arrived at Tim Horton's and found a table for the four of us. There was another couple sitting not too far away, a husband and wife. She kept staring at Adele, and not one of those smiley, friendly stares, but a blank stare. Kind of like a deer caught in the headlights.
I mentioned it to James and he said that she probably has seen Adele's face plastered all over the place and she recognizes her from Facebook or the news.

He was trying to make me feel better.

I went up to the till, Brinley was with me. The lady got our order ready and looked at Brinley and told her just how cute she was and that she loved her outfit. She then pointed over to Adele and said "that one there is cute too."
She said it like it was forced, she needed to say something because she knew that both girls were with me. I felt a bit hurt.


We sat down with our food. Another lady, on her own, sat next to us and was commenting on how adorable Brinley was and that she was a busy little girl. We acknowledged and laughed a bit. By this point, I didn't want to talk to anybody else.
She looked at Adele and said "so sad." Yes, this is what she said. Before I could react, she caught herself and said that she thought Adele was cute. It wasn't sincere, it wasn't genuine.
She then asked me how old the girls were and I told her their ages. Why I was still engaging in conversation with this lady, I don't know.
There was a little gasp when I told her Adele's age. Yup, my little girl with Down syndrome is almost 18 months, she's not crawling, she doesn't walk and she's still in a car seat because we think it's the safest option for her at this point in time. Go f@#k yourself!

I looked at James and he knew that it was time to go.
The lady, who already has done enough damage, then proceeds to tell me that I must have my hands really full with two young children. I nod. She tells me that Brinley will be a lot of work but having Adele will be so much more work, lots of effort and extra time put into her.

I looked at her, I wanted to cry, punch her, kick her in the kneecaps, but instead, I told her that we love our daughter and that she is one pretty awesome kid. I couldn't get anything else out. I was stumped. This has never happened to us before. This shit shouldn't happen to us and to other families who have a child of varying abilities. Where have parents gone wrong in raising their children? What happened to teaching your children about respect, inclusion, acceptance and differences? When you teach your children all of this, they grow up to be kind, respectable adults.

James helped me get the kids back into the car. Before we left, I decided to buy some donuts for the NICU and drop them off. The NICU was a place of comfort for us and Adele was loved and appreciated. I needed to feel some peace and comfort.

I pulled away and I cried. This was the first time that I've heard some of these words, words that were directed towards Adele. I was so hurt. My heart ached for Adele. My tears continued to flow as I thought about the future and when she will understand what people are saying about her. I cried for the times when Brinley will have to defend her sister. At this moment, in my car, I mourned the loss of the 'perfect typical' child. I felt sorry for my baby girl. I felt sorry for those who don't get it. I felt sorry for the ignorant people in the world.

Some people may think that I am exposing my child too much through social media or fighting for changing the face of beauty, I am doing this all for a purpose. I am trying to educate the world. I am trying to pave a smooth road for both of my children. I am on a mission, but today I felt like I failed. This is not a woe is me speech, it was just a hard day. I know that we have so much love and support that surrounds us and we are grateful and thankful. Tomorrow is a new day.

 
 

15 January 2015

50 Things That My Child With Down Syndrome Will Do



I've been thinking about yesterday's post. I felt that I needed to write part two.

What Adele and her friends WILL do. :)

1) Change the world
2) Impact lives
3) Smile
4) Love deeply
5) Join Special Olympics
6) Make friends
7) Go to school in a mainstream classroom
8) Volunteer
9) Get a job
10) Make others laugh
11) Teach the world about kindness, love and respect
12) Travel
13) Dance
14) Make the world a better place
15) Go to college
16) Date
17) Get in trouble
18) Tell jokes
19) Make us proud
20) Learn skills to live on their own
21) Talk back to their parents
22) Learn to drive a car
23) Experience ups and downs
24) Teach us to slow down
25) Show us true beauty


26) Enjoy life
27) Create peace
28) Teach us about honesty and respect
29) Hug with meaning
30) Teach us that giving is better than receiving
31) How to care for others
32) How to listen without judgement
33) Hard work always pays off
34) Just relax
35) Don't set limits
36) Anything is possible
37) Be genuine
38) Say what you mean and mean what you say
39) It can be done
40) Will encourage you to find your own strengths and talents
41) Will teach you about not judging others
42) Teach us to love with all of your heart
43) Don't doubt their abilities and capabilities
44) Life is pretty good
45) Value your family and friends
46) Teach us to be patient
47) Show others that life should be valued and lived to the fullest
48) Teach us to sit, look around, listen, talk, be a good friend to others
49) Play sports, join clubs, win awards, gossip with friends
50) Our beautiful children will enrich our lives and those around us


The world is filled with judgement, stereotypes and ignorance. Our beautiful children will encourage us to be kind to others, to love with all of our hearts and let others know that different really is beautiful. We all have our own strengths and talents, we are all unique. We are all on our own journeys.