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.

5 November 2014

My 100 List. Things I Thought I Would Never Say As A Mother!

Here is my list of things that I have said as a mother. I am surprised and slightly embarrassed.

1) Who has to poo?
2) Brinely, take your finger out of your bum.
3) Adele, put your poo down.
4) Don't eat the play dough.
5) I just said, don't eat the play dough.
6) Fine, eat the dirt, it will help to build your immune system.
7) Stop dry humping the ground.
8) You can't get naked during mass.
9) Do you want Kraft Dinner or hot dogs for lunch?
10) Stop saying "mom, mommy, mom, momma, mom, mommy." I HEAR YOU!
11) Just let her puke on herself in the tub.
12) You need to simmer down, your poo is flying out of your diaper.
13) You're lucky that you're cute.
14) I'm writing the ad for Kijiji right now and I'm even throwing in a box of diapers.
15) Wait until I tell your father.
16) Put another Barbie movie on.
17) Give her the IPad.
18) Eat any coloured snow.
19) If you stop, I will give you a Kinder Surprise.
20) You're acting like your father.
21) Just give her the lollipop, she can eat a meal for dinner.
22) You need to wear clothes when we leave the house.
23) No honey, don't put the toy there.
24) Mommy needs more sleep, lay here beside me and don't move....here's the IPad.
25) Mommy needs a bottle of rum.
26) You come over here, or you will regret this later.
27) You smell like your father.
28) I love you but I don't like you right now.
29) You can have a bath next week.
30) Go ask your father.
31) Mom needs personal time, can you go play on your IPad.
32) Don't lick the slide.
33) Don't lick the rock.
34) Don't lick the garbage.
35) Don't lick the cold pole.
36) Don't lick your shoes.
37) Don't lick your sister.
38) Don't let your sister lick you.
39) Don't fart on your sister.
40) Take the plastic bag off of your head.
41) If you eat your veggies, you can have a Kinder Surprise.
42) Never mind, here's your Kinder Surprise.
43) Stop going inside of the fridge, you don't fit.
44) You can't have a lollipop and a bag of chips for breakfast.
45) Ok, you can have the lollipop but not the chips.
46) Ok, you can have both, but you need to kiss me.
47) Hey, you can't pile drive your sister.
48) No chokeholds in this house.
49) Don't drag your sister across the room by her arm.
50) You are loving your sister a little too much.
51) That's daddy's sensitive area, don't punch or kick.
52) Stop putting your whole face in the chip dip container.
53) You can't just eat ketchup for dinner.
54) It is made from tomatoes......
55) Stop drinking the bath water, your sister just peed.
56) Honey, don't bend over like that when you are naked.
57) Why did you have to poo right when we left the house? Now you have to sit in it.
58) Don't bite my toe.
59) Could you just have put one roll of toilet paper in the toilet?
60) Mom just wants to poo in peace.
61) Don't eat the chalk.
62) Come here, let me smell your bum.
63) Give me the other one. Somebody stinks. Who pooped?
64) Mom needs to find her inner peace.
65) Your dad is gonna get it when he gets home.
66) Stop grabbing my boobies.
67) Stop playing with my stomach fat.
68) Get your head out of my bum.
69) I'm going to call your father.
70) Stop crying, you can't drive mom's car.
71) I'm taking back all of your toys to the store.
72) Stop throwing all of your toys in the garbage.
73) Your savings account looks better than mine.
74) 1........2........3..........
75) I am losing my mind.
76) We are out for dinner, get out from under the table.
77) Stop helping yourself to all of the fruit and candy at the grocery store. That's theft.
78) Your sister will learn to pick her own nose.
79) You have a very poor attitude.
80) Mommy is about to lose her shit.
81) If you don't sit still, I will sit on you.
82) Stop jumping around, you will get diarrhea.
83) Your dinner will be your breakfast.
84) This isn't a restaurant. You eat what I make.
85) Ok, what would you like to eat?
86) Stop rolling when I'm changing your diaper, now I have poo under my nails.
87) Why do your Barbies always have to be naked?
88) I'm the boss in this house. I run the show. You are my little minions.
89) James stop watching MMA, Brinley just booted her sister in the head.
90) If you say no one more time, I'm gonna put you up for adoption.
91) You are acting like an animal.
92) You get that from your father's side of the family.
93) Does anybody ever listen to me??????
94) All three of you need to grow up.
95) Walk away, walk away right now. I'm not kidding.
96) That noise that comes out of your bum is unreal.
97) Sometimes, mom drinks.
98) Stop sniffing me.
99) If you bounce that off of your sister's head one more time, shit's gonna get real.
100) Brinley, don't lick mom's bare bum.