Jenny's Post....

My friend Jenny writes a blog that is wonderful and amazing. She recently wrote this post and I asked if I could share it with all of you. Made me think....
I still added pictures of the girls :)

 

 This whole "inspiration porn" thing has been bothering me lately. When Russell was born I needed to see the positives in raising a child with Down syndrome. I needed to see happiness...I needed to see kindness. And back then in Russell's first year, my FB feed was full of people passing around "feel good" stories. Stories that left you with a warm feeling and a big smile on your face. Stories that made you a little less scared of your child's future...Stories that gave you a little hope.

And then there was a shift. Then the term "inspiration porn" came out and everyone shyed away from sharing anything that might be even remotely nice, or kind, or "too inspirational". Because you know, that is damaging to our kids and all. Those feel good stories cause more harm than good. We don't want people to show extra kindness to our kids because that takes away their dignity. Ug...*sigh*....Sorry, I'm being a little snarky here, I can't help it.

 

It's just now days all I see are those horrible, gut wrenching, awful stories being passed around. Children with Ds being abandoned, aborted, mistreated....And I guess I am stumped really as to why everyone is so damn quick to share these stories and not the ones that are...well, nice? I guess I don't understand why it is better to show stories of people abandoning children like ours instead of showing people being "overly" kind to them. My FB feed use to be full of positive inspirational stories...Now it's all pretty much filled with anything shocking or negative. It sucks.

So, an article is floating around the Internet. And the whole shady surrogacy thing aside, this article really broke my heart. It's just so sad to know that many people in this world still view Down syndrome as something to be scared of. Ashamed of. That some people would think a child with Ds is not worthy of love. Something they wouldn't want to "take on", so to speak.

It got me thinking...It got me thinking about what changes a persons perception of what Down syndrome really is? What helps people to see that it is not something to be feared? That those living with Down syndrome do not lead horrible, wretched lives...That it is not the awful existence they think it is.

 

Anyone who reads this blog knows that I am not against inspiration porn...I think it plays a role. I think it is still needed to help push change forward. I don't think there are enough good stories out there. I don't think we are anywhere close enough as a society to do away with it altogether...yet.
If we are still hearing stories like this in the media...If we are still hearing about people abandoning children with Ds...Letting them rot away in Institutions...If the abortion rate for babies with Ds is still as high as it is...Then how can we possibly say we need to get rid of inspiration porn? How can we say that we no longer need it? That it does more harm than good? 

Doesn't all this scream that there is not enough good stories and experiences out there being shared? Doesn't this scream that people still don't know enough, that they are not educated enough to not fear Down syndrome? Doesn't this tell us that there have not been enough "feel good" stories out there for people to view Down syndrome in a positive light?
So inspiration porn...What is it that actually bothers people? I think for many parents it's that they don't want their child being treated "special"...They don't want people being kind to their kid out of pity. They want their children respected and treated as equals. But that doesn't mean that all inspiration porn is bad...That all acts of kindness are really just pity and taking away a persons dignity. Sometimes kindness is just that, kindness.

 

I hear people bitch about the cute pictures with inspirational quotes attached to them being passed around. How we shouldn't waste time on stuff like that...You know,  because sharing pictures of cute kids with Ds doesn't bring about real change. My response to that is...

Um, so? Why does every one have to be only worried about making real change? What about those new parents? What about them? They're still scared to death. They still don't know what to expect. They aren't anywhere near ready to tackle real change like the ABLE Act or Sheltered Work shops, or anything like that. They are taking baby steps into this new world...They need to see those cute pictures and inspirational quotes. Who are you to say they have to jump in head first into all this advocacy and disability rights movements? Just because you are there...Just because you are ready to fight for change does not mean everyone else is at the same point in their journey as you. And you don't get to tell people how soon they need to get to that point, or how to get there. You don't get to deny them those baby steps. So those cute pictures of kids with Ds...Don't like them? Don't look at them! But they still play a small role in creating change and shifting peoples perceptions, so they are of some use, they do some good, some people need them. So if you need an issue to complain about, find something more important than this to focus your energy on, cause in the end it just isn't that big of an effing deal.

 

Those inspirational stories in the media where it is also mentions the person has Ds. I know some parents have a problem with this. I hear the grumbling of "Why do they even have to mention he has Ds"...Why? Because some people out there still aren't as educated as you are, that's why. Some people are not aware of what people with Ds are even capable of.

I shared a story of a man with Ds running a Marathon once. He was the first person with Ds to complete that Marathon...Instead of celebrating, I heard many in the Ds community grumbling over the fact that Ds was even mentioned. They didn't think this man should be singled out for running this marathon because you know, he only did what all the other runners did, what's so special about that?

What's so special about that?

 

Russell is almost five and he is not a good runner. His movements are still abrupt and choppy and all out of sync. It makes for the cutest little run you have ever seen. But it's difficult for him.

And there have been times it made me a little sad. Sad to see kids younger than him move their bodies with so much more ease and effortlessness than Russell. So if one day he runs a damn Marathon and the news paper also wants to add the fact that he has Down syndrome. Fine by me! Because Ds made it more difficult for him to accomplish it. Because his body was something he worked to overcome...And I know many parents have a problem with what I just said about Russell "overcoming" his body. But how else do you word it? The struggle to fight past the fact that your body does not function as smoothly as others? Isn't that overcoming? And what's really wrong with that?

Anyway, onto more inspiration porn...

Homecoming. Every year I see parents get all bent out of shape when they see someone with Ds has been nominated homecoming king or queen or whatever. And I always wonder why such a fuss? To me when I see people get outraged at this type of thing I think they are sending a pretty powerful message. A negative one. They are saying to the world...No way this kid got nominated simply because people like him. No way can anyone else see how awesome he is, this is all out of pity. This is only to make them feel good about themselves....

Well, I can tell you this. Here in Canada we don't have that homecoming nonsense. But if we did, and if Russell was nominated, the last thing I would think was it was out of pity. I would think he was nominated because people thought he was a great guy. That he earned it. That he had made a positive impact on people and they wanted to recognize him. And ya, maybe Ds would play a little role in that, and so what if it did?! Maybe his peers, the ones he grew up with...The ones he went to school with since Kindergarten, would want to recognize how awesome Russell is. How much harder he has to work for things that come naturally to them. What a positive attitude he had. I guess I just feel like when we bitch and whine about these stories and how they are just inspiration porn,  we are really telling the world that our kids would never be worthy of such an honor because they have Ds...And that to recognize them in such a fashion is just fake and terrible and all out of pity because no one can possibly see our kid for who they are. And that it's wrong to single them out...To admire them...To feel inspired by them.
People can't really win though can they? If people with Ds were never nominated or given that honor, the Ds community would be all outraged over it. And then when kids are nominated the Ds community is still outraged over it. What a confusing message to send to people!

About those sports stories. 

 

You know where the kid gets passed the ball in the last few minutes of the game? You see a crowd full of people cheering, people in tears. Well, this is a personal story. It is about that community...That child, and that child's parents. If you are not the type of parent who wants your child on the team because he didn't earn the spot or isn't good enough and you feel it is all out of pity...That's fine. But you don't get to call the shots for other parents. If a parent knows full well their child is only on the team because he is being "allowed" because people are being nice...If they know he is mostly benched, but that child loves the feel of being a part of that team...Well that is their business, not anyone else's. You don't get to tell other parents how to raise their children. If allowing a child with a disability to be on that team is what the child wants, what the parents feel good about, what the team embraces...Then so be it. Why put a negative spin on it?

And here is something else people need to keep in mind. All our children may have Ds...But all our children are different. They are all capable of different things. Ok, I hate that I am wording it this way but I don't know how else to put it. I'm going to use the "functioning" word.

A parent with a "higher functioning" child may have different expectations for that child. They may not want their child treated special because they know their child is fully capable of doing things everyone else is. But what about the children on the other end of the spectrum? What about the ones who are not talking, reading, writing...The ones who struggle way more? Why is showing them extra kindness so horrible? Yes, as parents we all hold high expectations for our children...We all work with our children to help them reach their potential. But the bottom line is, no matter how much work or therapy you do with them, some kids are simply not going to be capable of achieving the same things as others. And that's ok, that's just the way it is. It doesn't make any one more important or more valued than another. But it makes it so that what may not be ok with some parents with how their children are treated...May be welcomed and appreciated by other parents.

And this all kind of ties into the next topic...

 

About the child playing the last few minutes of the game, or being passed the ball?  Ya, um so what. *gasp* Oh the horror of it all, a bunch of kids finding a bit of heart and wanting to make some one feel good or have an awesome moment. This is sooo terrible and awful. I can't imagine anything worse! How degrading and dehumanizing. Ug...Really?

The thing is what you never fail to see in these stories is people being moved emotionally. You often see the crowd going crazy, clapping, smiling, maybe brushing a tear or two away. Because they are touched by the whole thing. And who is to say the community watching something like this cannot feel that way? Who is to say it is so awful and wrong? Again, I feel this is a personal story to those people who are actually there and involved.

Maybe this community has watched this boy grow up. Maybe a lot of people in this community had a hand in raising him. Maybe in that stand full of people "pitying" this child, there are therapists who helped teach this boy to walk, or toss a ball...Perhaps there are teachers who helped this boy learn to read and write...Perhaps there are store clerks who have had daily conversations with this boy and have watched him grow from an infant. Perhaps there are bus drivers who personally cared for the child and made sure he got on and off that bus safely everyday for years. Perhaps there are babysitters who love that boy. Perhaps there are Nurses or Doctors who in the beginning didn't think that boy would even walk or talk....Maybe there are people in that crowd who genuinely love and care for this child. Who have watched him learn and grow...Who have been touched by all he has overcome, all he has worked for...Maybe this boy has made a difference in all their lives...And they want him to have this moment. And who is anyone to tell them that this is wrong. That this is damaging. Some may see this example as a community using this child as their feel good mascot...While others may see it as a community coming together and celebrating and embracing this child. Whose to say which is the right way to look at this situation? It's a personal story.

 

What I described above is what I want for Russell. I would much rather have him embraced and loved by his community than ignored...I would rather him be surround by a bunch of teenagers who would want to be kind to him, than not. Not every form of kindness and compassion is out of pity. In many ways it is simply a celebration. That's how I choose to see it anyway. I choose to not be horrified by people being overly kind to my kid.

So why do I feel that these stories are still important? Because when Russell was born I was completely devastated. I thought of his life being absolutely miserable. I thought of him being taunted and made fun of and being treated cruelly. If I had seen a news clip of a boy being passed a ball by teammates that cared about him and were inspired by him...If I had seen a crowd jump to their feet and cheer him on...I would have been less scared. To see a news clip of a boy with Down syndrome being embraced and supported and valued by all those around him, even if they were all being *gasp* overly nice...Well, it would have given me hope and made me feel like everything was going to be ok.

 

There is a need for all  types of stories. There is a need to share more good. I guess I just wish people would get over that "inspiration porn" term and go back to not being afraid to share some of the good out there in this world. I wish I saw more people sharing stories that left a smile on your face instead of the ones that make a person want to throw up and hide their child away from the world to keep them safe. I just don't think inspiration porn is as damaging as people think it is.

So that's my opinion. Like I said I know some disagree with this way of thinking, and that's ok. We each need to raise our children how we think is right...And there is no one way, no "right" way. We all love our kids and want the best for them...What may feel right to one parent, may not to another. So if you don't like inspiration porn, skip past it...And if you do like it, don't be afraid to share it.

 

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

 

 

 

 

 

 

 

 

 

 

 

 

Don't Wear a Bikini....

Today's post has nothing to do with an extra chromosome, it has to do with a couple of posts that have gone viral in the past week.

Both women wrote about their bodies and how they have been shamed lately by others. My opinion....

One woman was hurt by comments that were made to her by others at the beach, hurtful and unkind words. Women have babies and some of us women get stretch marks. Some women call them stripes that they have earned and they are proud of them. They show them off by wearing tube tops and bikinis and then when the world comes and attacks them, they get offended and write blog posts about how insensitive society was towards their bodies and their stretch marks. Is it fair to be verbally attacked by others, no, it's not fair. Do I think you made a poor choice in what you wore to the beach? Yes, I do. Did it warrant a verbal lickin'? No, so don't attack me! These are my thoughts.

I didn't have stretch marks on my belly before I got pregnant with Brinley. It was all smooth, beautiful and at one point, fairly flat.
At 7 weeks, yes 7 weeks, my first stretch mark appeared. I went into a state of shock and knew that eventually, my whole tummy would look like a Snakes and Ladders board game.
It took almost the entire pregnancy, but my god, it happened and I didn't like it, I actually detested it and couldn't stand looking at them. Of course, James didn't care or he just knew better then to actually say something. :)
The stretch marks did not go away.
I got pregnant with Adele and more appeared. My body didn't have enough time to get back to its 'normal' state after Brinley, so now, I had stretch marks and dangly, dog jowl type skin. Did I love knowing that I was growing a baby inside of me? Absolutely. Did I love what pregnancy did to my body? Not one bit! 

Ok, my point...would I go out into the world and show off my dangly, flabby skin that is covered in stretch marks, because dammit, I grew two babies in there and I deserve to show it off. I am proud! I love my body. It is a temple.
Hell no!
It's not appropriate and nobody wants to see it. Should you be damn proud that you housed your five babies, your three babies? Absolutely! Be proud!
Do you need to wear a bikini and show off your stretch marks to the whole beach? To the whole pool area? No, you don't.
There is a reason why designers make one piece swimsuits. There is a reason why there are bandeaus and skirt type bathing suits, so that us women who have the stretch marks and dangly skin, can go to the beach and feel semi comfortable.

When you go to the beach and you are not dressed appropriately for your body type, you will get judged. Do I think it's harsh for others to criticize you and make you feel less worthy? Yes, it is harsh and it's not ok, but for the love of the lord, don't run home and write a blog post/letter about how you were so incredibly criticized and have a boo hoo moment when all you had to do was cover up a bit. Yes, it's important to be confident and to be proud of our bodies and wear clothes that compliment our figures, but seriously, when you put your string bikini on and look in the mirror and see highway lines all across your abdomen, do you not think that maybe you could have made a better choice in bathing suit designs?? We are a judgemental society, it's sad and unfortunate and I wish that we could all just get along, but this is not the case.

I believe that your body should be shown off at home. If you want to do jumping jacks for your husband at bed time, go ahead. If you want to play a board game on your stretch marks that you are so proud of, go nuts. Your body is for you and your partner. If you want to wear your string bikini in your backyard, go ahead. If you have company over and you wear your string bikini, go ahead. It is your house, but when you go out in public, as I said before, some people are cruel and mean and will attack you, save yourself the upset and embarrassment and cover up! You can still be sexy and confident while dressing for your body type.

I am getting tired of reading posts by women who think that this world just isn't fair. They can't post pictures of themselves on Instagram showing their weight loss, because they are told that it's inappropriate. I think it is inappropriate when you post a picture of yourself in your bra and underwear and share it with the world, whether you are skinny or overweight, but you get all pissed off when Instagram removes your photos but not the skinny girl's photos, then you blame it on the fact that you are fat. I'm pretty sure that Instagram has removed trashy pictures of the skinny girls too, but you get on a rampage about how unfair life is and that you are going to close your account because the world is against you.
Why do you need to share those pictures? You know what? Good on you for taking the steps to lose weight and to be a healthier you, but I don't need to see your week by week pictures. Save it for your partner, your spouse.

Social media has become a place filled with hate and criticism and judgemental a-holes. I get it, but I feel that some women are making it harder for others. I saw a video once of a woman who was probably a good 400 pounds, wearing a bikini, running down the street, because she wanted to show the world that she was proud of her body.
You made yourself look like a fool. You are a heart attack waiting to happen. Your cholesterol levels are through the roof. How is this ok? How does this make women look good? How could you possibly think that by running down the street, the world is going to look at women differently? More people will respect women after watching your circus act?
It was a sad video and I was embarrassed for you and for your friend who filmed your jog!

When I see a woman dressed in beautiful clothes, it doesn't have to be designer, just nice clothes that compliment your figure, you are showing your confidence, you are telling the world that you have healthy self esteem. There is sexy/classy and then there is sexy/trampy. It's too bad that we, as women have taken social media and turned it into a pornographic, whiny, trashy portal for others to be sucked into.

Don't take this post and dissect it. I am not against women in bikinis. I am not against sexy clothes. I want women to have confidence, whether they are a size 2 or 14. You don't need to be a size 2 to wear a bikini, but use some good judgement.
I am on a weight loss journey of my own right now and working hard to get back to where I feel confident wearing a bathing suit. I share my goals with my friends and they support my journey by offering words of encouragement. Pictures of my body and measurements are not on the internet because I respect my body and I respect myself. The world doesn't need to see me in my bra and underwear, nor would the world like to see me in my bra and underwear. ;)

Make women look good. Be proud of your accomplishments. Love your body and cherish the moments when you were pregnant with your babies. Love your stretch marks if they make you happy. Love the dimples on your thighs because you earned them. Love the flabby skin that you were left with after child birth. Love all of you.......but stop telling the world that you will wear the bikini because you earned it.

Next blog post.....how I feel about Speedos. :)

The Road Ahead. A Letter to Brinley.....

My Big Sister announcement :)

Dear Brinley,

In the past year and a half, life has been busy. We found out about your sister's diagnosis when mommy was 15 weeks pregnant. We focused on making sure that Adele arrived safely and that while she was growing inside of mommy, she was healthy. We had lots of appointments to make sure that sister's heart was beating properly and that she had no other health concerns. It was a time where mommy and daddy were trying to balance having a baby and taking care of a baby all at the same time. You were always such a good girl.

When you were around 16 months old, our town flooded and we had to go live with Grandma and Grandpa for three months, then your sister was born one month later. Mommy and daddy were so busy worrying about the house and your sister, that sometimes, you didn't get the love and attention that you deserved.

Part of me wants to apologize that you have a sister with special needs. Part of me worries that this will be difficult on you when you are older. Part of me just feels bad. It won't always be an easy journey for you and you will have to stand by your sister and be there for her when she needs you. You may not always want this role, but we need for you to help guide your sister and encourage her to be the best that she can be. Is this asking too much? I don't know, but the journey that we are on will come with some added bumps and maybe a few more mountains that need to be climbed. We need to work together. We need to support one another. Mommy and daddy will always be there for both of you. We will always advocate for you and we will help you reach your full potential. There are no limits.

I worry that when you are teenagers, you won't connect and that you will have different interests. I worry that you won't want to confide in your sister about boys or a crush that you have because you will feel that she won't understand, that she just won't get it.
I worry that you will feel excluded. I worry that you will wish for a sister who didn't have special needs. You will wish for a sister that doesn't have Down syndrome.
I've thought about this many times. I think about the future a lot, although mommy should live in the present and focus on each day rather on what lies ahead. It's tough.

On the other hand, I remember the first time that you met Adele. I remember, you were not even 17 months old and you couldn't wait to hold her. I would put a pillow on your lap and you would touch your sister and hold her hand. You would actually hold her hand. It was so beautiful. I remember taking you to the NICU almost every day and you would sit by your sister's bassinet for hours, you were such a good girl.

I remember bringing Adele home and you were waiting at the front door at Grandma and Grandpa's house. You were so excited. You wanted to feed your sister a bottle and you wanted to snuggle her on the couch. You were so in love.

I watch you when other people come up to Adele and you give them the stare down, you let them know that she is your sister and that they better handle her with care. They also only have a limited time to hold her. You make everybody aware that you are the bigger and older sister and you make the rules when it comes to Adele.

I watch you at home with Adele and how you bring her toys so that she can play. I watch you take her face in your hands and you look deep into her eyes, right down to her soul. You are letting Adele know that everything will be alright. I sometimes wonder if you know that things are a little different.

I watch you kiss her. I watch how you touch her. I watch how you interact with her. I watch how you show her love in so many ways. A love that I have never seen before with other siblings. It's a love that is so deep and so intense.

Every single morning, when you wake up, the very first thing that you say is  "Adele" and you run to her crib. You look in and say "hi", it is the sweetest sight. When Adele goes down for a nap, I see that you miss her and you point out her toys to mommy and you talk about her, you talk about her little nose and her eyes and her tummy. You show just how much you love your sister, in so many different ways.

I worry about the future Brinley. I worry about the bond that you and your sister will have years down the road, but what I see now, is this little girl who loves her sister, unconditionally.

In the past year, I have seen you become a different little girl. Although you are only 2 years old, you have more compassion, you have more love, you smile more, you are part of a world that not everybody has a chance to be a part of. You have a sister with Down syndrome.

Your sister is going to teach this world so much. She is going to teach you to slow down. She is going to teach you that beauty comes in all different forms. She is going to teach you to laugh when you don't feel like laughing. She is going to be your best friend. She is your sister.

I love you Brinley to the moon and back. I love you for who you are and for the little girl that you are becoming. You, my sweet girl have made this world a better place.  You have shown me a love where there is no judgement. It is a pure love. A love that is innocent.

Let's travel this journey together.

Love you,
Mommy

 

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

TODAY, I DIDN'T WANT TO BE A MOM.....

 



This was a difficult post to write...

Today, I didn't want to be a mom. I hit that wall, big time. I wanted to get in the car and drive, all alone, to anywhere but High River. I needed out.
I had no patience. Not one ounce. It was a tough day with a one year old and a two year old.

I didn't want to be a mom and part of me missed the times when I only had to worry about myself and my own needs. Today, I didn't want to take care of anybody.
I didn't want to get up and out of bed and....

1) Get Brinley her milk
2) Get Adele her bottle
3) Get Brinley's breakfast
4) Give Adele cereal
5) Change diapers
6) Repeat all over again for lunch

I sent James a text and told him that I was spent and exhausted and done. I think that as a mom, you only have so much in you to give, before you need to fuel up again, get more energy, find more patience. I don't live a balanced lifestyle, at all. I take care of my kids and family and forget to take care of me. This is why I hit that wall today.
I honestly wanted to curl up into a ball and cry. Adele is needy. I know that everybody just wants to give her snuggles and love her to pieces, but when you walk away to do something, she cries and it makes it difficult to get things done. It gets frustrating and I lose my patience.
Brinley also has needs and jealousy sets in when her sister is getting the attention. Having two babies so close together in age, is hard. They are still babies and they still need their mommy, but how do you do it, when there is only one of you and two of them??

My energy is drained and the monotony of the day is getting to me. I love putting the girls down for naps at the same times because it gives me time to myself and it gives me time to get things done. Brinley isn't always necessarily tired by 11:00am, so she stays up with me. No time for me.

Adele will go down by 10:30am and Brinley, lately, has been going down at 1:30pm. This is not conducive to going out in the afternoon and it also doesn't give this momma any alone time, the time that I need to breathe and focus on my goals for the day.

I remember the days when I got up, went to work, came home, cooked dinner, sat on the couch and watched TV, headed to bed and life was calm. I just did my own thing.
Even going farther back, I remember when I went to work, went out with friends, had dinner and drinks, planned week long vacations and talked about me. I talked about the music that I loved, the movies that I just recently watched, the trip to Paris, London and Rome, the week long vacation in Mexico, where I drank and ate and loved my beach chair.
I remember these days, when it was all about me, and today, I missed it.

You can call me a jerk but this is how I feel.

My life has become slightly boring and monotonous. I need to rejuvenate. I need to find activities just for me. I need to hire a babysitter to come in once a week, during the day, so I can go out and refresh and become whole again.
Our schedule is usually fairly busy, but it is busy with my children. It is play dates and appointments and feedings and bum changes and naps and schedules.
It's difficult to change things up when it's so important to have routine with children. They thrive on routine. I am a teacher, I love routine, but lately, routine is taking me down, it is my enemy.

I have two girls who don't eat the same food. That is difficult.
I have two girls who nap at different times. That is difficult.
I have this baby who needs extra care. That is difficult.

I am a stay at home mom. That is my title. My title is no longer 'TEACHER', my title is a mom. Just a mom. I need more.

I need to find myself again. I don't need the single life. I don't need a life without children. I don't want a life without children. I don't want a life without James.
I want a balanced life. I want to figure out what my mind and body need in order to get back to where I need to be, so that I can be the best wife and mother to James and the girls.

I need a way to keep my energy and my patience level up with my children, all while taking care of the house, my husband and my own needs. I am only 37 years old. I am young. I need to find me again.

I am going to find me again.

 

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

Dear Jennifer O'Brien

Dear Jennifer,

Your family has been on my mind constantly for the past two weeks. I have been grieving right along side of you, however, I have no idea what you are feeling and the emotions that you are experiencing.
I have felt pain. I have felt anguish. I have felt sadness. I have felt bitterness. I have felt rage. My heart has hurt and I have cried tears of sorrow for your family.

I don't know how to say that I am sorry for what you have been experiencing. I don't know how to say that my heart feels such pain and sadness and anguish for you. I can not even fathom the courage that it takes for you get out of bed in the morning and how you are able to get into bed at night not knowing about the well being of your son and family. I am sure that your nights have been long and your days just blend in with one another.

The whole city is in pain for you. The whole province has been grieving and praying for the safe return of your family. The world has watched your story on the news, not knowing what they could do to ease your pain.

I am a mother. I have two beautiful girls and I have not intentionally put myself in your shoes, but it enters my mind, what would I do in your situation? How would I cope? How would I carry on? How would I be able to continue breathing, not knowing the whereabouts of my child? I don't know that I could do it. I don't know how I could still be a mother to my other child and in your case, how do you pull together the strength every day to be a mother to your other children. For me, this is just a scenario, for you, this is real. I am sorry.

Today was the day that we all found out the news. We found out that your child and family will not be returning home. I know that my words will not bring you comfort, my words will not ease your pain, my words will not bring back your beautiful son and family.

My heart broke today and I wept. I wept for you and your husband and your children. I wept for your extended family. I wept because I don't know how you could possibly heal from such tragedy. I wept for myself, although this sounds selfish, I thought of my children and my parents. I wept for all the other parents who have experienced the loss of a child.

You have heavy days ahead and many mountains that you will have to climb. I am so sorry. I am so incredibly sorry. You are not alone. You will never be alone. You have so many people who will carry you through this hardship and tragedy. We will all support you. We will all pray for your healing. We will come together as a community and try to re-build your strength and your faith in humanity.
My prayers are for you.

Sincerely,
Krista

Where's the DAMN spare key??? :)

We are back from holidays. We spent a week in Radium BC and loved it. Brinley owned the pool and Adele couldn't get enough of the pool snuggles with mommy, under the umbrella on our lounging chair. So relaxing, co calm and so perfect.
The trip was smooth sailing except for the one day when mommy and daddy almost lost their minds. That was the day when Brinley locked herself in the trailer. Yup, locked herself in, with all of the keys. On one of the days that it would reach 35 degrees Celsius.
It went a little something like this.....

It was nap time for Brinley, so I took her into the trailer, put her down, turned on the spa channel and I left. Brinley immediately got up and came to the door, I opened it and ushered her back to bed.
All good.
She got up again and instead of opening the door, she locked it. I didn't quite realize that the door was locked until I went to open the door so that I could put her back to bed.
Pulled on the handle and yup, Brinley locked the damn door.
James and I were trying to explain to her how to unlock the door and we must have said around twenty times to push on the red lever. She was hysterical and thought that she was in trouble. Every time I told her to unlock the door, she started to cry again. She was getting more upset and James and I were started to get a little worried.
I had turned the air conditioner off when I put her down because it wasn't that warm outside yet, I figured we had another couple of hours before it needed to be turned back on. I cooled down the trailer before nap time so it was quieter and she could hear her spa music. No lack of spoiling!
The neighbours heard us yelling through the door and after a few minutes, they both came over to see if they could help out.

We were trying to come up with a plan. James decided that he would call my parents to see if they had a key hidden somewhere. I mean, come on, everybody hides keys, in flower pots, under decks, under a brick, somewhere, except for my parents.
Brinley decided to go take a nap. She had given up and was tired from crying and from thinking that we had locked the door, we were keeping her inside the trailer.
Another set of neighbours came over. It was starting to get hotter outside and this is when I started to get concerned about the temperature inside the trailer. It got hot fast and I realized that we didn't have two hours, the trailer would be getting warm fairly quickly. I mean, I knew that she would be ok, and if we were that concerned, we would smash a window.
One of our neighbours, Karen, went to all of trailers and cabins and asked for each family to come with their keys to see if one worked.
Key after key after key and nothing worked.

Smile Adele!

 

In the meantime, I was trying to google locksmiths in the area. I couldn't find anything. One of the neighbours, Bob, pulled out his trusty AMA card and called to see if we could get a locksmith out immediately.
The locksmith in the area was currently out of the area and there was no cell phone coverage. They would call back within 10 minutes.
I could do ten minutes.
As long as Brinley stayed sleeping, I was doing ok.
A couple of the neighbours asked how I was doing and when I was asked, I was wondering if I should be panicking. Should I be crying? Should I break a window? Should I bang on the door and slide my hand down the glass in despair? Maybe I needed to be a little more emotional? Maybe I am too calm? Maybe I should call the fire department and have them axe down the door???? No, my dad will kill me. I will stay calm and drink heavily later! :)

James and I don't do well when chaos hits. We lose our patience quickly with each other and get snappy. We get irrational and say things that are silly. We need to work on how we deal with stressful situations. It obviously doesn't work when you aren't supporting each other.

Best swimming tube!

The manager heard about our situation and came over to help. He told us that he had a friend ten minutes away who is a locksmith. OK! DONE!
It took him around twenty minutes to get to the campground and just as he pulled up, Brinley woke up.
The neighbour and James had removed the screen in one of the windows, in hopes that James could get Brinley to grab the trailer keys and bring them to him.
She woke up and was a little teary. James told her to bring him the keys and she listened. She was rescued!
I opened the door and it stunk like poop in the trailer.
Poor little peanut had shit her diaper, probably out of fear. Glad we haven't started potty training yet. That could have been a whole different problem. :)
We still paid the locksmith, although I thought that maybe he would have given us a deal. There was no sympathy. Oh well!

The trailer tragedy turned out ok. Toddler was rescued, no injuries, no extreme heat, no therapy needed, hopefully.

Daddy snuggles :)

 

We took the girls to the pool after the eventful morning. While we were at the pool, there were two little boys playing. They were around six and seven years old. They were constantly arguing, hitting each other and using words like; crap and hell. They were used in a way that I know this is how they speak at home.
I was a little surprised but thought that it could be worse.
What came next? The seven year old told his brother to FUCK OFF! Yup, that's what he said, loud and clear and it just flowed too easily out of his mouth.
I gasped, loudly.
Then I said "dear lord!"
This is when the mom decided to get up off of her chair and go take her son out of the pool. She didn't move immediately after he said it, she moved after I gasped and made a comment.

A lot of growing happens in two years!

She yanked him out of the pool and went into the bathroom and actually washed his mouth out with soap. A mouthful of liquid soap, a verbal licking and told him he wouldn't be going back in the pool for the remainder of the day.
Within twenty minutes, he was back in the pool.
She went up to James later on and told him that she has no idea where he gets that from, that language, but mentioned to somebody else earlier on, that she sometimes says it while driving.
I am far from perfect and I have said things that I have not been proud of, but let me tell you, if my child came out with that kind of language, there would be hell to pay. It's not ok, it's not right and it's trashy. But wait, would I give my child a whoopin' or would I re-evaluate how we speak at home? They are learning this from somewhere and my guess is it involves how you are parenting your child.
It made me realize just how much our children soak in our actions and our words. They are listening to every word that comes out of ours mouths. They listen to our arguments with our spouses. They listen when we are talking on the phone. They are always listening.
A seven year old should not be dropping F bombs and saying it without any hesitation. The whole week that we were at the pool, it was constant, the boys were always in trouble for saying something, for doing something wrong, for bullying each other. I was getting annoyed.

Driving back home :)

So, this week....I have a goal and I hope you will give it a try. Be conscious about what comes out of your mouth. Be conscious of your actions towards others. Be conscious of your words and behaviour when in front of your children. Be a good role model. Be somebody who your child looks up to and who respects.

Children are great imitators.
So give them something great to imitate.
~Anonymous~

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

I See Down syndrome...

We had a busy and fun week! I love busy, I love getting the girls out and having a good time.

I know that summer holidays have just started but I am a planner! I found this link and think that Gillian has some great advice for teachers. It's a great read! Bring this to your child's school. Be pro-active. Be your child's strongest advocate.

10 Things Teachers Should Know About DOWN SYNDROME

Things are going pretty well right now. Adele's health has been great and she is getting bigger and stronger each and every day. We have another vision appointment next month and I'm pretty sure that she will need glasses. Her right eye crosses a lot and could use some strengthening. I'm ok with glasses, that is minor and besides, she will look even cuter. :)

We also have to go for her 12 month blood work in the near future. I'm not a fan and I know that they check for certain diseases. CANCER is one of those diseases. It worries me a lot. Our little ones have a greater chance of getting cancer, it's not fair and it's not right and I am not ok with it. I figure that if I throw it out there, we will be safe. Say a little prayer for us please.

I don't know if what I am about to write is wrong or if it will sound horrible.....

When I look at Adele, I see Down syndrome. I don't see Down syndrome in a bad way, so don't take it like that....it's hard to explain. I see the features and as she gets older, I see the features of Down syndrome become more prominent. Her eyes are shaped like almonds and the bridge of her nose is pretty flat. She doesn't have all of the features though, her pinky is straight, there isn't a big gap between her toes and the palm of her hand has more than one line. I think because she doesn't have all of the features, this is why the doctors questioned whether or not she actually had Down syndrome. I reassured them that the non-invasive testing and the amnio both came back positive. Adele has Down syndrome. Of course I see my child, of course I see Adele, I see a very beautiful little girl, but I see Down syndrome and sometimes I am reminded of the journey that lies ahead. I hope that this makes sense?!?!?

On the other hand.....

Sometimes, I am actually more relaxed with Adele's pace of development. I know that things will be a little slower. I know that she will speak later. I know that she will crawl later. I know that she will walk later. I know all of this and it actually puts me at ease. It's bizarre. It slows me down a bit and allows me to watch Adele develop at her own pace. It allows me to savour the milestones. It stressed me out before, but lately, I seem to just take it all in. I tell ya, this journey makes a momma overanalyze too many things.
I find that with Brinley, I stress more. She is my typical child, she is the one who should have crawled at 9 months, who should have walked at 12 months, who will speak at 2 years old. The path is set for Brinley. According to the charts and books and manuals, she will achieve all of these milestones at a certain time. There is a very small window. I don't know why we can't just let our children develop at their own speed and do things when they are ready. Brinley started crawling at 10 months, this was late. Brinley started walking at 14 months, this was late. Brinley does not say the 100 words that she should be saying by 2 years old. I see the posters when I take Adele to OT.
"Your child should be saying at least 100 words by 24 months. Please check with your doctor if your child should require speech therapy."

Mastering this whole sippy cup thing! :)

I spoke with Adele's pediatrician and asked if I should be concerned about Brinley's development. She put my mind at ease. She has watched Brinley. She has listened to Brinley speak. Brinley is coming out with new words daily. She told me to wait until she is 3 years old before I should show real concern.
I know that her comprehension level is amazing and she follows directions. Again, I need to savour all of the moments and enjoy this time, before long, she is going to be bossing me around and telling me how we should run this house. She kind of already does.....God help me!

I said the most ridiculous thing the other day. A girl that I had just met asked me if Adele looked like her sister. She didn't know that Adele has Down syndrome. I kind of paused, thought about it and said that Brinley's sister has Down syndrome.
Really? I actually said this to another person.
What was I thinking? It was like I was caught off guard. I have never been asked that question before and I didn't know how to answer it.
I should have said something else, but instead, I said that Adele has Down syndrome. I should have said that I wasn't too sure if they looked alike and shown her a picture of Adele and she could judge for herself.
I then realized that what I said was not the best answer. I corrected myself and said that just because she has Down syndrome, it doesn't mean that she doesn't look like her sister, Brinley. She understood.

I felt like an idiot. I just said something that others say who have no clue and it pisses me off. I just did it. I just wrote about this in my last post. SIGH
Both girls looked like their daddy when they were babies and now they are transforming into their own little identities. We made both girls (not in a factory) and of course they are going to look like us. I know that we are at the beginning of this journey and I have so much to learn. I will say things that won't come out the way they should and I will make mistakes. I follow a couple of other blogs, they have older children and they keep me in check. :)

Adele's Facebook page is doing stellar and the donations continue to come in. We are so grateful and thankful for all of the love and support. Thank you! Have a wonderful Sunday! xo

Adele's Over the Rainbow Baskets - Down syndrome LOVIN