4 May 2014

Moments....


Life has been pretty good lately. Adele is officially off of oxygen, there are no more tubes, no more tape, no more machines, no more prongs in this house. We are finished with the Respiratory Clinic but will be seen by the Pulmonary Clinic from now on, just for check ups. I love that Adele continues to do well, she gets stronger and cuter by the day. Her health has been great these past few months and I am thankful that she has had her RSV shots, I believe that they have helped out a lot and have played a major role in keeping her healthy.

We are going pretty strong on eating solids. She enjoys peas, green beans, sweet potato, carrots and most recently, bananas. I am thankful that so far, she enjoys everything that we have given her, and taken with a smile. I worry about feedings. I have many friends whose little ones are tube fed and where feedings are a struggle. With Adele, I am thankful for every day, every day that she's healthy, every day that she smiles, every day for rolling over, for talking, for snuggles and for the amazing interaction that she has with her sister. It is truly a whole new world for us, so many things that we have taken for granted with Brinley. We honestly took breathing for granted. How is that? We took feedings for granted. Babies just eat and drink because that is what babies do. All for granted.


One thing that I am struggling with a bit is that Adele isn't sitting up unassisted. I know that she will reach every milestone in her own time and she has done so remarkably well, but I can't help but wonder, when will she be able to sit up without flopping over? She is nine months and is beyond strong, stronger then we ever imagined, but her muscle tone is weaker. I know that she will sit up in her own time, I get it, I really do, it's just a different feeling, it's difficult to explain.

I was at a party the other night and I showed a picture of Adele and one of the ladies said that it didn't even looked like she has Down syndrome. I have mentioned this before in a previous post, it doesn't bother me when somebody says this because they just don't know. In her mind, she isn't saying that children with Down syndrome are ugly, she is saying that she knows the features of Down syndrome and it looks like Adele's are more mild. We, as parents with a little one with Down syndrome, we are more sensitive to comments about our children, and we should be, I get it, but this is one comment that doesn't really affect me. The ones that really get me are "Oh, you have a Down's baby." The words 'retarded' and 'fucktard.' Those two words used in any form, make me cringe.
I actually read a post one day on one of the Down syndrome sites, one comment was that she takes offense when people say that somebody is "Special."
I know that sometimes I have said to James that Brinely is "so special." I never really thought about this one before, but I understand where she was coming from. It makes sense. We have stopped!
Another one for some reason, that I don't like is "I have a Down's child."
I think it's that I have an issue with making it possessive because it's defining your child, it's saying that this is what you child is, your child is Down syndrome.
If I had to explain Adele's diagnosis to anybody, it would be, "this is Adele, she has Down syndrome." She is Adele. That is it! :)


The majority of my friends who have children with Down syndrome, they are a bit older, some already in the school system. I enjoy reading their stories and seeing how their little ones are doing great, but I also read about their struggles and concerns. It's tough some days but I also feel comfort that I am present in her future school. The teachers know me, they know Adele. The children know Adele and ask about her....it is so sweet. I am trying to pave a smooth road for her, things that I am able to accomplish right now, without it taking away from my snuggle and loving time with my children. I am still loving all of these moments and enjoying the baby stage, but I am also getting out there and learning about new programs, connecting with others through the blog and through Adele's Over the Rainbow Baskets. I will always be my girls strongest advocate. I will do everything I can so that they are able to succeed without setting limits, giving them all the love and support that we are able to give.


Lastly, we were out last night for dinner with a group of family friends. The dinner was planned because one of the friends is living with cancer. I prefer to saying living and not dying of cancer. I'm pretty sure that doctors have been proven wrong when they have told patients that they have 4-6 weeks to live. This is what Karen has been told. She has up to a month a half to live. She is coming up on 6 weeks and still going strong. The cancer has taken over a lot of her body and it is heartbreaking. She is receiving intensive chemotherapy and is fighting with all that she has...she is a fighter. After dinner, her husband came to our end of the table. While we were talking, he stared at his wife the entire time. He never took his eyes off of her and the love and admiration that I saw, brought comfort to my heart but also brought so much pain. He told me that she is the most remarkable woman. I started to cry. He told me that he does that every day, he cries. I have truly never seen love like this. I have never witnessed a man look at his wife, right into her eyes and without saying a word, show such love and emotion. It was a moment for me.


It was a moment where I realized that we all need to slow down. We all need to stop and take a breath. We all need to appreciate those in our lives, those who we wake up next to every day. We need to tell those who we love that we love them and couldn't imagine our lives without them. We need to let our children have moments where they just need us. We need to let them fall asleep on us and realize that sometimes all they want is love. Such pure, innocent love. I need to slow down. I need to stop thinking about tomorrow. I need to appreciate today. I need to enjoy the moments with my family and be thankful that I have a husband, I have two beautiful girls, I have amazing friends. I need to slow down.



26 April 2014

Disneyland!



Well, we are back from 5 days in Disneyland. It was a great trip, busy with two babies, but great.
All 10 of us headed to the airport for 8:30am and we managed to get there early. We had two suitcases, 2 boxes of treats for the flight crew and passengers, 2 carry on bags, an oxygen machine for the flight, 2 strollers and a car seat. It was crazy lugging all of it around and going through security. The strollers got the pat down while we are trying to manage 2 little ones and trying to keep track of our luggage and carry on bags.
With the help of grandma and grandpa, we managed to get settled probably 20 minutes before boarding. We made 190 treat bags for the flight and it was announced before we boarded the plane. The message that we included in the bags was read so that all the passengers could hear and I shamelessly included Adele's Over the Rainbow Baskets Facebook page in the little write up. Always thinking! :)


We were the first ones to board the plane, which was nice, so that we could get the girls settled and all of our junk! We had the bottle ready, the lollipops were ready to be sucked. We were going to do all that we could to avoid ear pain. Brinley was not happy when she was told that she needed to remain seated during take off, there were a few tears, but other then that, we were all ok.
The flight went really well, the girls were happy and well behaved. :) When it was time to land into LAX, Brinley was tired and hungry and not in the mood to be told to sit and stay buckled. She cried and yelled and cried and yelled all the way down. It was glorious! Thank god for the treat bags, although I don't know if they helped the passengers in the rows all around us. One lady in front of us mentioned that maybe ear plugs could have been included in the treat bags. I almost told her to shove it, but instead I focused on my wailing child. I didn't know if I wanted to spank her or hug and kiss her, all I wanted was for the plane to land. Once we touched ground, I unbuckled her and she wanted some snuggles and immediately fell asleep in my arms. Poor peanut.
Adele was happy and in all her glory for the entire flight because she was being snuggled and loved. She's pretty low maintenance when she is getting some lovin!


We made it to the hotel way later then expected...we went for dinner then got the kids ready for the Pirate Pool area. Such an awesome and fun time for the kids. There is this massive bucket that fills up with water, then it tips over and soaks the kids down below. I offered my sister 50 bucks to stand under the bucket but she refused. My dad piped up and said that he would do it for 50 bucks. I knew that there was no way that my dad would take my money, after all, I am a stay at home momma on a budget. He stood under the bucket, got soaked and gladly took my money. We tried to make him feel guilty by telling him that it was Brinley's meal money for Disneyland and that now she would have to eat ketchup packets for the entire trip, but that did nothing. He still has my 50 bucks! :)


We spent 2 days at Disneyland as a family and had a great time. Brinley isn't into rides yet, so we hung out at Toon Town and let her run around the play area. She loves to be able to control the situation, so if it's something where she can come and go, play on the structure, but stop when she wants, she is happy. 

We decided to stay at the pool on the third day. We spent 8 hours at the Pirate Pool and Brinley loved it. There is a little kiddie pool, which I called the Pee Pool, she was in her glory. It's a foot deep and perfect for a 2 year old. She would run and splash and play with her water toys. It was such a perfect day. Adele and I hung out in the shade, she napped and fed and cuddled with her Minnie Mouse. We tried to put her in the Pee Pool but she wasn't into it. We tried.


I met up with a dear friend who I met through the blog. She started reading the blog right from the start. She found out that they would be having a sweet princess with Down syndrome right around the same time as us. We chatted often and shared our fears and worries but also our excitement of meeting our little miracles. She went full term with Ella. She was to be induced. That's when her nightmare started. The cord had wrapped around Ella's neck and sadly, they lost her a few days after delivery.
I couldn't wait for her to hold Adele and snuggle her, she had been waiting a long time. She held her almost the entire time and it made me smile. It was such a great moment for all of us. I know that it was also difficult and emotional for her but I think that joy of holding Adele and actually being able to spend some time with her, eased some of the pain.


Our trip lasted 5 days and it went by so fast. We decided that this time, Brinley would sit with her cousin Danika and her Auntie for take off and landing. James and I would sit with Adele and our nephew Ryder. The flight went smashingly perfect. Brinley stayed with Danika the entire flight and we sat with the comedian.  :)
Ryder is such a hilarious kid...we call his sayings Ryder-isms. Let me share a couple from the flight.

James has a tattoo on his arm - "Uncle, you look just like a rock star. A real rock star. Wow!"
During the flight, many, many times - "Auntie, are we going down? Is the plane going down? AUNTIE, IS THE PLANE GOING DOWWWWNNNNN?"
I encouraged him to maybe not say that because it could cause anxiety in others. This meant absolutely nothing to him.
I told him during the flight to stop doing something and he looks at me - " Auntie, I sure like the way you talk to me."
Landing into Calgary - Ryder's arms are up in the air - "WEEEEEEEEEE, can we do this again? Let's do it again Auntie!"
Going through customs - "Mom, can I have my gun? It's a real gun! MOM, can I have my gun?"

The kid kills me! He is non stop and hilarious. You never know what's coming next. I get a little frightened actually and sometimes hold my breath when he opens his mouth!


Oh ya, when we were at the airport, mom, dad and I saw Joan Rivers. She was about two feet away from us. She looks the exact same in real life as she does on TV, plastic with lots of makeup. She was with an assistant, who got her to the plane and boarded before anybody else. It must be a rough life. :)


Before we left for Disneyland, we decided to throw out all of Brinley's soothers. Friends gave me many suggestions on how to get rid of the soothers, great suggestions. Tie them up in a bag, put them in the tree and tell her that the Soother Fairy would be coming to take them away, let her throw them out, put the soothers in a Build A Bear as well as many more. I suck as a mom, I put them in a Sobey's bag and chucked them when she wasn't looking. We are now soother free! My friends are way better than me and I am A-Ok with it! :)

Crazy Ry!
 
 
Danika and Ryder
 
 
 
More pictures to come! :)



13 April 2014

I Wish You Could See What I See :)


A short post for me. :) My friend Regan sent this to me this morning and I absolutely love it! Take the time to read it, you will enjoy what she has to say.....

I Wish You Could See What I See



 
 
 
 
 
CLICK ON ME.....  :)

6 April 2014

RUN, THE CAMERA IS OUT!!



I've been meaning to write about this topic for a while now, then another blog with the very same topic was shared on my wall. The other blog post was about being too fat to photograph. I didn't really want to call it that, I was thinking, "RUN, THE CAMERA IS OUT! RUN! RUN!!
Then I hear "where did Krista go?"

A friend recently commented on my wedding picture from back in 2010, then of course because Facebook is whacked, it brought the picture up to the top of my friend's newsfeeds. I knew that this was going to happen and my heart palpitated a little bit. Why did my heart palpitate you ask? I don't feel that I look the same way. I don't feel that I look anywhere close to how I looked on my wedding day. I also knew that my friends would comment and pay me compliments, because I have awesome friends.  :)
With every comment, I was coming back with "that was four years ago, I don't look the same. I got married, I have two children, I don't look like that Krista."
My dear friend Jody posted a comment that I needed to stop. I needed to embrace the compliments and just say "THANK YOU!"
So, I stopped with the low self esteem comments and acknowledged the kind words.


This brings me to why I am writing this post.


I don't like my picture being taken, by anybody, ever. I pretty much stopped having my picture taken when I became pregnant with Brinley. I think maybe my dad took a few pictures at Christmas time, so I was around 6 months along with Brinley. I don't have any pregnancy pictures when I was carrying Adele. Not one. I don't have any either with her right when she was born because she was whisked away and James missed the birth. The first picture I have is me in a wheelchair beside the baby cooker in the NICU, over 24 hours after I delivered.


I see pictures all over Facebook of friends and acquaintances and I don't judge. I don't look at their pictures and criticize their weight or looks. I am thinking, oh so nice to see a picture of so and so. WOW, so and so looks great and her children are adorable. I also admire their confidence if they are carrying a few extra pounds and they jump in front of the camera, big smile and striking a pose. They are comfortable with their body. They feel good about where they are at in life, their body, their health. They are content.

Yup, I am not as content with where I am at in regards to weight and my body but I am very blessed in other areas of my life, my children, my husband and life in general. I have read several blog posts where women are shouting from the rooftops that they love their stretch-marks, they earned them, they love the dangly dog jowl type skin that now hangs down after having children, they earned every stripe and they love it.
I don't love it at all. I love my babies, but I don't love one bit what pregnancy does to your body. It turns it into a floppy mess. A floppy mess that takes a long time for some of us to get rid of. I have friends who bounced back after 6 weeks, their bodies were perfect just weeks later. They didn't try to get it back to how they were pre-pregnancy, it just went back to tight and stripe free.
I don't have that body. My first stretch-mark showed up on my belly at just 7 weeks pregnant with Brinley and they quickly took over my stomach. I looked like a game of Snakes and Ladders. They never went away, then 8 months after Brinley, we got pregnant with Adele. This time, it looked like the anniversary edition of Snakes and Ladders. :) More stretch-marks. Sigh.


So now I have two beautiful girls and not too many pictures because I am not happy with my body. I think it's a bit selfish. It is not about me, it is about my girls. It is about them looking back and seeing beautiful pictures of their mommy, while they are sitting on my lap, while we are out at the park playing, while we are snuggling on the couch, while we are on vacation. I know that all they see is their mommy, and they love me. They don't see that mommy isn't where she wants to be with her body, they see their mommy. They don't see the dog jowl type thing hanging down, they see their mommy. I want memories that they can look back on and smile. I want them to know that I was proud to have my picture taken with them and that mommy made it a priority to have our picture taken together. I had two friends tell me that their mom was always behind the camera and never enjoyed having her picture taken. They both lost their mom at a young age and they don't have many pictures to show their children. There are only very few pictures of their grandmother. I get that they have memories, but that isn't enough. I don't ever want to be in this position. I don't want Brinley and Adele to look back and question why there are no pictures of mommy. How sad.

 
We all go through stages. We go through times in our lives where we feel great about ourselves, and there are times when we feel a bit defeated and our self esteem takes a hit, but it is up to us to bring it back up. It is up to us to show our daughters how important it is to feel great about ourselves. It is up to us to boost our children's self-confidence. It is up to us to let them know that they are perfect. My girls won't hear the word 'DIET' but they will hear that we need to eat good food and take care of our health. It is up to me right now to get myself back to where I feel good so that the girls know what it is like to be healthy and happy and beautiful.


My family deserves to see pictures of me. My parents should have pictures of their children together. They deserve to have pictures of their grandchildren, sitting on their daughter's lap.
I need to step back. I need to relax. I need to not be so critical of who I am. I need to realize that no, I am not the same Krista that I was four years ago. I have changed. I am married. I have two children. I am older. I need to look back at the pictures taken a few years ago and enjoy and savour those moments. I want to do the same thing, a few years from now. I want to look back and savour these beautiful moments.


Adele's Over the Rainbow Baskets

29 March 2014

It's Time for a Re-post! :)

I had a thought....my posts lately have been a bit on the down side. What's happening to me? It's time to get back to happy, joyful, crazy Krista. I decided to re-post and share my mommy group again. I got some great feedback on this one and smiles are good on Saturdays! If you want to smile then have a little down moment, continue reading.....

 
 
James decided to go to bed at midnight, I had no idea. I had to get up at my normal 2 hour interval to pee, go into the bathroom and there is my 6'4" husband laying in cold water in the tub reading his book! He looks at me "HI BABY!!"  I don't think I said too much because I like to keep myself in a sleepy state! Went back to bed and fell asleep.
Well, 2:20am rolls around and James flies out of bed...
J - "Where's Brinley?"
K - "What?"
J - "Where's Brinley?"
K - "What?"
J - "Where's Brinley?"
K - "In her crib."
J - "Oh yeah."
K - "Are you having a nightmare?"
J - "No, I just couldn't remember where she was...."
K - "Hmmmm....ok."
Took me 45 minutes to fall back asleep! Boo.




Yesterday, I decided to check out some mommy and tot groups in the city. Brinley loves music, so I thought maybe I could find a good one for her, before baby makes her grand debut!
I found a couple and I had this flash before my eyes.....some of you have messaged me and think it's hilarious that I did this...no, no...it's just my imagination, what I think would happen!!! It may make it less funny now. ;)

I show up in my Lulu lemons, all stretched out in the front to accommodate my ever-growing belly, walk into the house and find myself surrounded by a dozen women, drinking their short, half soy, half milk with cream mocca vanilla latte with splenda and decaf, skim, extra hot wet caramel latte with whip' with a triple shot of caramel macchiato with skim milk, light foam, and extra caramel sauce lining the sides of the cup no whip but a pinch of nutmeg in a Venti cup, and an extra shot of vanilla. ALL NON-FAT!
I walk in and I can see that some of the women gave birth the week before and they are sporting their skinny jeans with no spanx. I say hello and sit down because I can't run now, I'm stuck in this hell!
The host of the party has provided some delicious canapés for all of us. A piece of cucumber on half a melba toast as well as cherry tomatoes that were organically grown in some place far, far, far away. If you are still hungry after your treat, you can grab a handful of chia seeds to top it off. I sit, drinking my Tim Horton's coffee because I like fat in my coffee.
One of the women then asks me what I do for a living. I feel confident because I can actually say that I am a stay at home mom, so they will think I have money. Then the next question, but what do you really do? I am proud to be a teacher. I AM A TEACHER. Then I hear from a few of them that they think it's cute and ask if I needed to go to school to become a teacher. They giggle.  I swear under my breath. I can't leave yet. They ask me what my husband does and I tell them that he locates underground utilities for oil and gas companies. I hear again that it's a cute job but does he come home with dirty hands??!??? He sure does. They giggle.
I ask them what their husbands do for a living...I don't know why I ask because I am just digging a big hole, actually I wish I was in that hole and somebody was pouring the dirt on top of me. One woman tells me that her husband is the Chief of Neurology at The Foothills Hospital. I ask if he needed to go to school for that?? She glares at me.
The other woman tells me proudly that her husband is a plastic surgeon. I ask her if he has performed all of her surgeries? She glares at me.
I think it's all going smashingly well so far. It's then time to go for a walk to check out all the million dollar homes that are for sale in the community. All of their 2000 dollar strollers are lined up and colour coordinated outside of the house. I head to the car and grab mine, unfold it and plop Brinley into her 200 dollar stroller that only has one drink holder. I notice that my new friends each have 6 drink holders and an IPod docking station on their strollers. Oh, and look, they also have remote controls so they can program their stroller, they don't even have to push! That's sweet.
Go for a walk and pretend that I love the homes and decide to tell the women that we are planning on renovating our place sometime in the future. Like get a new towel rack or something. The women share their renovating stories, they had to stay at the Ritz while the house was completely gutted and they hired Nate Burkus to decorate the entire house. I LIKE MY TOWEL RACK!
The walk is over. Thank Goodness!
We all head back to our vehicles. Well, look at that, they all drive luxury SUVs. I put Brinley into her car seat, fold my stroller and hop into my SUV, my Chevy Traverse! I fart and head for the nearest McDonald's.

I'm not too sure if I have a pre-conceived notion of what mommy groups entail.... :)

Adele's Over the Rainbow Baskets - Down syndrome LOVIN





 

28 March 2014

Am I Messing it all UP?

 
BEAUTIFUL <3

Well today I hit a wall, not literally, although that is something that I would do. The day started off just fine, I chatted with my dear friend Cat, she informed me that everything is all set up at the PLC for Adele's Over the Rainbow Baskets. She spoke with the manager of Labour and Delivery/Postpartum and the manager told Cat that she would embrace the idea of the baskets. Cat was so excited that she was crying on the phone with me. She has been such a supportive and kind friend throughout our journey. <3


Taking a nap on daddy :)

The girls and I have a routine that we try to follow every weekday. We get up, Brinley gets her milk, we all hang out, Adele gets her bottle and Brinley has breakfast, then it's nap time at around 11:00am for Brinley. I usually have their outfits picked out the night before, so we can get dressed and out the door. I didn't do that last night. I decided to put Brinley in her crib and pick out some clothes for the girls. I should have known better. When I went to leave Brinley's room, she went into the ugly cry. I picked her up, had some snuggles, and tried again. Nope. At that moment, I started to feel a bit overwhelmed. I don't know if it was  because our schedule was thrown off or that I knew that Brinley would not get a nap today since we had Music Therapy in the afternoon? I brought her into our room, Adele was already napping and Brinley sat on the bed and played Endless Alphabet while I showered. Then I had a thought, I don't follow the 'nap rules'.....I don't put Brinley down at 1:00pm which is normal for her age. I put her down in the morning because we have so many things going on in the afternoon. Am I totally messing her up? I should be following the 'nap rules.' I'm sure that all my friends do what the books say to do and I'm the only one screwing with my child's sleep schedule. Brinley needs a morning nap still. She's tired. She would also take an afternoon nap if we weren't so busy. AHHHHHHH!!!!!


So HAPPY!

When I got out of the shower, I felt I hit a wall. I was standing in front of the mirror and I had tears in my eyes. At that moment, I let too many thoughts rush in. I had two hours to get ready, get the girls ready, feed them lunch, out the door and on our way to music. Yes, I realize that two hours is enough time to get it done, but I felt that I needed more time. I needed to make sure that Adele got her cereal and Brinley needed lunch. Then I had another moment. I feel that James and I aren't doing enough for Adele. I feel that we need to be doing more exercises. I feel that we need to feed her more solids. I feel that we need to focus more on Adele. I felt lost. I feel that we need to be more consistent. I feel that we need to set up a schedule. We need to do exercises at certain times and if we write them down, we will do them, we will get them done.


NO MORE SNOW!!

I feel so lost sometimes when it comes to Down syndrome. It's not that I forget that she has Down syndrome, it's that we had it one way with Brinley, where we just loved her and fed her and changed her. It was 'normal.' It's not 'normal' with Adele. It's a whole new world. I feel that sometimes we don't know what we're doing. Our lives are consumed with writing her feedings down, what she ate, how much, what time, a pee, a poo, a spit up. Oh no, her poop is solid again since we started cereal, so do we up her prune nectar? Is she stronger? Is she less floppy? Is her breathing sounding better? The hearing clinic isn't calling me back. I've called them three times. Don't forget to call for her next vision appointment. Don't forget that she has her respiratory appointment next month and that they need to give us all the forms for the flight to Disneyland. Don't forget to call Medigas and get the cylinder that we need for the flight. Don't forget the tegaderm for her cheeks.




Why haven't we watched all of the DVDs for Signing Times? We need to learn more signs. Wait, there's another thing, the OT said that although Adele is extremely strong, like surprisingly strong, we need to work on strengthening other parts of her body. The OT mentioned that she didn't want to deflate my bubble.....deflate my bubble? I don't have a bubble to deflate. We just work on things, we work and worry. We need to work more on her core. Adele is going to end up realizing that she can move around while she's on her back and she'll think that it's ok to crawl and move around that way. She needs to be on her tummy and get those arms up front.
I sometimes feel that I need somebody to take my hand and guide me through all of this. I need somebody to call me every day and tell me what to do. Are we missing stuff? Should we be doing more? Are we giving her every opportunity to succeed? Are we doing all that we can now? Are we messing it all up now and she won't walk until she's 5? I DON'T KNOW!!!!

Sigh

I need to know that others are in the same boat as us. I need to know if you feel that you just don't know sometimes. I need to know if you feel overwhelmed by appointments and making sure that you stay on top of blood work and tests. I try so hard to take things day by day, but it's impossible. I think about the next appointment, the next test, the future.

I'm trying so freakin hard with these kids to give them all the love, encouragement, support and joy that I possibly can give but I sometimes feel that I'm messing up. I could do more. I should be doing this....that....going here...going there....saying this....saying that...
And then the added stress of having a little one with special needs. I don't ever regret having Adele, she has made our lives complete. She has made this family complete. Being a parent is hard work. Being a parent to a child with Down syndrome really tugs at your heart strings. It's not the 'normal' that we are used to. It's a journey. A journey filled with a lot of questions. A journey filled with so many unknown paths. I want to be on the path that will allow Adele to flourish. I want to be on the path where I am smiling and breathing and taking in all of the wonderful moments. I want life to be easy for Adele. I want her to shine. I want her heart to be full. I want her journey to be one of beauty and love and hope.



23 March 2014

Down's Babies....



Life has been pretty busy lately, with appointments, friends, World Down syndrome Day, trying to get Adele's Over the Rainbow Baskets all organized and trying to keep a house organized and clean!

I put a phone call into one of the hospitals, the NICU in Calgary, so that I could get their fax number and explain the purpose of the baskets. The conversation went a little something like this...

K....Hello, I just wanted to explain a proj...
Rude lady....Who are you?
K....I just wanted.....
Rude lady.....Who is your doctor?
K....I am trying to expl....
Rude Lady...What is your name?
K...This is what I am trying to explain to you.
Rude lady....Who is your doctor?
K...I have started a project, to help bring some comfort and joy to families who have a child born with Down syndrome.
Rude lady...We don't have any Down's babies here.
??????????????????
K....Our little girl...
Rude lady...We don't have any Down's babies here.
My voice is now just a little bit louder and I am getting mad.
K...Our little girl spent 42 days in the NICU, so I know that there is a good chance that little ones born with Down syndrome will go into the NICU.
Rude lady...We don't have any Down's babies here. I will grab the unit clerk.

As she was putting me on hold, she made sure to say into the phone "OH MY GOD!!"




New person answers the phone.....
K....Is this a nurse?
Nurse...Yes.
I explained what had just happened on the phone and she apologized profusely for the clerk's behaviour. She loved the idea of the baskets and was eager to pass it onto her manager.

I got off the phone and I cried to James. I was so upset by the words and behaviour from the unit clerk. I think I was in shock too. This is the first person who parents talk to when they call the NICU. They have a baby in the NICU. Who are you, that you think it is ok to speak to somebody the way you did? I was appalled. This is why I was so upset. I am very sensitive when it comes to my children, and when you shout that you don't have any Down's babies in your NICU, I took it as a total lack of respect for my child. First of all, you should know how to properly answer the phone. Second, you should know the correct medical terminology. Do not call any child a Down's baby. They are children first, our children.




World Down syndrome Day! I went into the local elementary school last week, almost every day and gave presentations for nine groups of students on Down syndrome. I think that it went really well. I love the honesty, the naivety and the love that children have for babies.
One story from one of the boys touched my heart. While I was presenting to the grade five students, I asked if anybody knew the word that sometimes people with disabilities are called. One little boy put his hand up and he told the class that the word is 'RETARD.' He then went on to tell us that this word was used long ago and that it was an acceptable word to use, but not any more, it is a hurtful word. He then proceeded to tell us that his brother is autistic. His eyes filled with tears. My eyes filled with tears. The teachers in the room, their eyes filled with tears. He explained that his brother has been called retarded. More tears. I asked him if it hurt his feelings when his brother was called a name. He nodded his head. More tears. I could see the pain in his eyes and the hurt in his words. It was a moment, a moment where the whole class was silent. The whole class listened and I could see that the students realized that words can hurt. We don't always understand that when we use certain words, we are hurting siblings, friends, aunts, uncles, grandparents, moms and dads. You are not just hurting the one person who you are using the word against, it's a whole community.
It was a moment that taught us all that we need to be more aware of our words and actions.


World Down syndrome's Funky Sock Day!

Something else that was beautiful was when I spoke to the Pre-K classes. When they looked at Adele, all they saw was a baby, a cute baby. They don't see Down syndrome. They were excited to touch her fingers. They were excited to show love. They told me repeatedly that she was so cute. I realized that we need to start educating our children at a young age about differences, about how to be a good friend to others. If parents are not speaking to their children about how to be a respectful and kind individual, we are failing as parents.




It was a great week. It felt good to make a difference. It felt good to show my community that I care about our children. I believe that we are all given our children for a reason, there is a purpose. We were given Brinley and Adele and it is up to us as parents to encourage them to make a positive difference in the world. It is up to us to help our girls discover their gifts, talents and strengths. It is up to us as parents to show our girls that they can reach their full potential, no limits. I will continue to advocate for both of our girls and to reach out to others and hopefully make this world just a little bit better. Educate. Advocate. Awareness.


We are trying to lose the soothers....working out smashingly well ;)
 
 
So silly!
 
Sweet princess <3