Loss.....

Kids with Down syndrome are always happy!

Life continues to be busy in the Collins' house! Both Brinley and Adele caught the stomach flu. I took Adele to the hospital to make sure that she was ok, we left within a couple of hours and it was all good. I can't stand seeing my babies sick. It breaks my heart. Today, everybody is healthy and well but I am so hyper vigilant when it comes to Adele's health. Always focused on feedings, poops, pees, breathing......it just goes on. So many added worries with this little girl.

We went to ACH yesterday for Adele's respiratory appointment. The weather was brutal. I gave myself two hours to get there, we made it on time with half hour to spare. We always get in right away and things usually run smoothly. We were there for three hours...holy crap! We met with a few people, including the physiotherapist. She said that because Adele is so floppy, it will be difficult to get started right now. She wants us to focus on her core, bringing her legs to her chest and having her reach for her feet. She also mentioned that the left side of her head is a bit flat. We knew this, as she favours the left side, but she is also fully capable of turning to the right. She said the word HELMET a few times. I don't think we are anywhere near the helmet stage. She said that if she continues to favour the left side, we could end up with a helmet and that it costs 2000 dollars and it's not covered. She mentioned a few times that it's not covered. Maybe I was dressed like a slob yesterday and I looked like 2000 bucks would do us in! Who knows.

The appointment ended with the doctor coming in and he was pleased with her oxygen levels. I didn't think he would say that we could go oxygen free during the day, but yup, we are free of tubes all day long. We will stick with the oxygen at night until they send us a monitor. Yay for Adele!!!!

We left the hospital at 4:30pm and I knew that it would take a while to get home. It was snowing, windy and rush hour. I just hoped that Adele would sleep.  It took us an hour and a half to get to Glenmore, then I find out that it's closed. I was pissed. I knew that I would have to take Blackfoot, with everybody else. Get onto Blackfoot and it's slow. Adele starts crying, I was starving and I was going to miss Ryder and Danika's Christmas concert. I realized that there was a car stalled on Blackfoot, not far from a set of lights. It's cold out. There was a young girl sitting in the car, everybody was pulling around her, heading for home. I contemplated. I contemplated some more. I got out, ran to her car and asked her if she was ok. She said that AMA was on their way. Nobody stops for a young girl in need? So sad.
Adele and I made it home in three hours. My ass was asleep. My tummy was so empty that I would have eaten brussel sprouts! Yes, I said brussel sprouts!!

I later found out that a little boy, 18 months had been taken to the hospital with another young boy and the 18 month old died from his injuries. All I could think of was, I am happy that I am hungry, I am happy that Adele was a bit cranky, I am so happy that it took me three hours to get home. We made it home, a week before Christmas, healthy and happy and alive. I can't imagine the devastation that the family is feeling. No time is a good time, but I think about all if the gifts that have been bought, the family was ready for Christmas and now that little boy is no longer here. My heart breaks for the family.

This brings me to my next thought....
My dear friend sent me a message a little while ago and mentioned that a good friend of hers lost her brother to a stroke. He was 35 years old. Had a stroke and a few days later, he lost his battle.
For some reason, this really affected me. We all hear stories, we feel bad, send love and prayers, then move on. This one bothered me.

I bitch at James....

Here's my list....

Wiping his mouth on the black towel after he brushes his teeth.
He doesn't clean Brinley's bibs after she eats.
He doesn't fold his shirts the way I fold shirts.
He farts in the fan.
He used a Lysol wipe on the couch when I was feeding Brinley.
He leaves toothpaste in the sink after he brushes his teeth.
He stares at the TV when Brinley is eating and she chucks her food.
He shaves and leaves little hairs in the sink.
He doesn't listen when I'm talking.
He humps my leg.
He buys 600 of something instead of just 1 item.
He doesn't drive the way I drive and I get car sick.
He talks to me when I'm in the shower.
He doesn't do his hair.
He hits the walls with objects because he isn't careful.
He spills.
He sometimes uses the wrong words in a sentence and because I am a teacher, I correct him.

Yes, I bitch! My sister and mom right now are going "Yup, that's Krista."

My point is that if I woke up one morning and there was no toothpaste on that towel, I would wipe my mouth on the towel. All I need to do is clean the bib. Who cares about the shirts. I fart in the fan too. I've used Lysol wipes while he's feeding Adele. I can take two seconds to wipe the toothpaste out of the sink. I can clean up the mess that Brinley makes. He cleans up the mess that Brinley makes. I can wipe out the sink. No man listens when a woman is talking. I would hump my own leg if he stopped. I like that he tries to impress me by buying all different types of an item so that I smile. He does need a driving lesson. I would talk to myself in the shower if he stopped. He doesn't want to do his hair because he doesn't want another woman to hit on him. :) He does his hair when needed. He paints the damaged walls. He has his psych degree and he's smart.

Merry Christmas!!!



I don't ever want to be faced with the upset of losing a loved one in a tragic accident. I don't want to be faced with regrets. I need to appreciate all of the amazing things that James does for his family and to let go of the petty, ridiculous and minute things, that mean nothing. We get so caught up in our lives. We get so caught up in bills, sickness, kids and our busy lives, that we don't stop to breathe and enjoy all of the fabulous moments. I know that it is cliché, but we are here on this earth for such a short time, we need to make it amazing. We need to be the best that we can be. We need to call friends. We need to send out Christmas cards. We need to tell others that we love them. We need to appreciate those who are closest to us.
In a moment, one breath, one heartbeat, it can all be lost.

MY FACEBOOK RANT!!

I think today's blog needs to be about my own issues. :)

I love Facebook but I also detest Facebook. Maybe I detest Facebook sometimes because I have such a strong, opinionated personality.

#1 - People post pictures because they want others to Like or comment on their pictures. People don't post things for their own benefit, or do they? I know that I like to post sometimes, so that I can go back a few years and see what I wrote and posted. I like the timeline review that I get to do. My primary purpose is to share with others, so they can see what is going on in my life. Now, if I posted a picture or wrote a status and nobody commented or Liked it, would I be crushed? Probably not enough to cry or curl up in a ball in the corner with a bottle of rum, but I would probably over analyze why others didn't just LOVE the picture or status. I thought I was hilarious and the picture was so sweet!

This brings me to my #2 point - There are people on Facebook who ONLY comment or Like certain friend's posts. I don't understand. You only Like Joe, Johnny and Jake's pictures and statuses even though Kate, Katherine and Khloe have hilarious pictures and statuses. I don't get it?? Why do you keep those other friends on Facebook? Why bother? You should have 10 friends and Like everything that they post. Everybody is happy!!

#3 - You purposely avoid a friend's status and pictures because you want to piss them off and you have some vendetta against them. Are you kidding me? Grow up and delete. It will be better for all involved.

#4 - You are one of those people who scroll through Facebook and look and browse and read but don't ever Like or comment. I think you should find another social media outlet. Imagine if we all did that??? Facebook would be so boring and lame.

#5 - You only comment and Like pictures and posts that make you laugh. You refuse to Like or comment if the message is touching or even remotely emotional. You should get therapy.

#6 - You re-post and share everything that you read. Get your own thoughts.

#7 - You share all posts that involve loving you children, your son, your daughter, your niece, your nephew, your dad, your mom, your great aunt Hildie on your dad's side twice removed. We all know that you love your children. Of course you do. When I see these on your wall day after day, I want to call Social Services because I think something fishy is going on in your home.

#8 - You fall for every - Like this picture because this really unattractive girl is actually really beautiful and let's see just how many Likes we can get in a month. Does #8 really bother me or affect me? No! I just find it silly that a lot of these posts are a hoax and made up by some loser to draw people in to get your information.

#9 - Missing people - Don't post a missing person without sufficient evidence that it really is accurate and it shows a date. So many missing persons' posts are from years ago and the individual has been long found. Don't re-post to be cool.

#10 - I am a part of a mommy site. I'm not too sure I can remain a member on this site. Woman can be ridiculous. Some recent posts....

My friend is coughing up blood, what should I do?
I am wearing this dress to a Christmas party and although the back is sheer and the front is sheer and my woo woo is hanging out, do you think these heels match?
Here's a picture of my neighbour's garbage, it's in my bin, what should I do?
The roads are bad, should I stay home?
I've had diarrhea for days, should I call the doctor?
There's a mouse in the house, should I call an exterminator?
Somebody said that it's snowing out. I don't see snow.

I'm going to stop at #10 but let's be honest, I could go on for days. :)

I am going to end the blog with an awesome poem that has been shared with me several times. It truly is beautiful.

WELCOME TO HOLLAND

　

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

Have a wonderful Sunday! :)

Chilly Picture Saturday!!

I figured that today would be a good day to share some amateur photos....
Brinley had the stomach flu this week, for the first time, daddy and mommy both had colds. Our goal the entire time has been to keep Adele healthy. Don't panic, I do not have pictures of barf or snot. :)

Sometimes the pillow is the best place to sleep :)

 

 

Princess Brinley

 

 

I love this picture - fell asleep holding her stuffy :)

 

 

Starting to move around - that is not how she goes down at night!

 

 

Bed time stories have turned into IPad Air fun!

 

 

Not the best place for your nose prongs Adele!

 

 

BEST PICTURE - You're Gonna Hear Me Roar!!!

 

 

So pretty :)

 

 

Loves her sister and lately a rosary that she found :)

 

 

Could only take this picture with the IPad!

 

 

Sprinkles has a drinking issue - then she twerked all night long. Santa needs to send us a new elf :)

 

 

Have a fantastic weekend!

 

 

 

 

 

 

Back to the Beginning...

The start of our journey.....

These were my true feelings....

 

March 19th, 2013

Today was the worst day so far of my life. We found out that Baby Collins has Down syndrome. We went in this morning to the OB to get the results of the blood test. I guess there is no right or easy decision to make but all we ask for is your support. Yes, I am Catholic and I do believe in God but we need to do what is best for our little family. Through testing, you will never know the severity of the Down syndrome....why would we put a child through hell? There are just so many questions, thoughts and then more questions. All I know is that we are 17 weeks and we need to figure out soon what to do. I know that you guys will want to send a heart felt message but I have cried so much today that I am just asking that you say a little prayer for us and maybe you can just leave a heart to show us that you support and care. I am so lucky and blessed to have the most amazing friends and family. xoxoxo

March 22nd, 2013

Just a little update......we called the OB the other day to set up an appointment to terminate the pregnancy. They were going to call me back but I haven't heard anything. I also have not called back to find out. I have been reading some mommy blogs to get an idea of what it is like to have a child with Down syndrome. They are all heartwarming. We have decided to keep our ultrasound booked for this coming Wednesday to see if there are possibly any other issues. My placenta is still a concern. We are truly on the fence and flip flop constantly. This is by far the hardest decision we will ever have to make and is something that we have to live with forever. Thank you, truly for all of your support, your own personal stories but above all for not judging. I just want to get through this and resume our lives. I thank God for Brinley because that little bean still needs to be fed, watered and loved. She makes us laugh constantly. What a wonderful little girl. Xo

PS....the appointment to terminate was just to have the appointment, it didn't mean we would follow through. Hope that makes sense.

March 25th, 2013

Hi ladies...so we met with a couple today, they have a one year old and a 3 year old little cutie who has Ds. They are our age and she is just as crazy as me, so it was a nice visit. They are both RCMP out here and live in Okotoks. We spent a couple hours with them and got lots of answers and support. James hasn't really spoken to any of his friends about all of this, so it was nice that he could talk to somebody and get some info. He is having a very difficult time with all of this and some of you know that he internalizes a lot, so getting him to really speak up about how he's feeling, isn't always easy. We have our ultrasound booked for Wednesday morning at 8:30 at The Foothills. We will be making our decision that day. We need to see if my placenta is functioning ok and if babe has any more health issues. We got a call on Saturday and the charge nurse told me that I was scheduled to be induced that day. Nobody shared this info with us. crazy. Let you know how things are going.

March 27th, 2013

Hi guys....it was a good morning. We had a very thorough ultrasound done by an excellent tech. All the baby's measurements are excellent, better than Brinley's actually. :) The heart, right now looks good, the hands are straight, the legs and arms are measuring right on track, the kidneys and lungs and head are also looking great. The baby was out of control busy and wild all during the ultrasound. It was pretty sweet. The doctor just wasn't 100% sure that the baby has Ds because of all the measurements including the nasal bone and neuchal. James and I feel that we are 99% sure that baby has Down syndrome but we have decided to go for an amnio tomorrow just to be 100%. You know that I am OCD and need to know. So much for the 800 bucks we spent on the NIPT. Oh well. Also, I won't be attending my uncle's funeral which makes me a bit sad but we need to do what we need to do. It's important to us. Oh, did I mention that baby is a little girl??? :)))) Due to the great results today, and that they don't see any major health issues, we have decided to not terminate the pregnancy, so from now on, we move forward, get connected and maybe some counselling to control my anxiety and some of our fears. We feel that we are making the best decision for our little family and all of you played a role as well. Because we have such a strong support system, we know that we have your support and love. This little bean is going to be perfect, beautiful and loved. Love you all. xoxoxox

March 28th, 2013

The amnio went well...uncomfortable and bizarre feeling. A bit crampy now but relaxing. Xo

April 2nd, 2013

We just got our results back and again, we are expecting a beautiful little girl who may need a little extra support but who will have all the love in the world. Brinley will be the best big sister!!!

 

 

 

 

 

BEST DAY OF MY LIFE!

THE BIRTH OF THESE TWO GIRLS :)

 

 

Amanda.....

Ignore the soother ;)

It's Amanda's turn again....it will be a nice break for the blog readers. No poop, no humping and no sex. Just in case you have enjoyed my recent topics, I will be back. :)

I am still going to include pictures of the girls because I take too many and love to share.

The other thing, I need more blog followers. If you aren't following yet (down the right column), sign up!! It's about knowing who is reading the blog and me getting to know who is following along, on this incredible journey! :)

As the saying goes, appreciate the little things. Last week I was in bed most of Wednesday, with a very bad migraine headache, I could barely open my left eye or lift my head. The pain was the worst between 8a.m. and 4p.m. and to top it off Gage ( he is 4) was home all day as well. I was dreading it simply because Gage is a typical 4 year old boy, loud, crazy, daring and stubborn. I have had migraines before with just Gage and I and to say it was like living in the pits of hell for a day with a hot poker in my eyeball is an understatement. However Wednesday, was different, like the powers that be knew I needed some help. This is where the little things come in, Gage was quiet and kind and thoughtful, now I am not saying that I gave birth to the spawn of satan ( although some days I feel I have two demons umm I mean difficult children)  as of late Gage and Grae have been harder to handle and seem to just not care about what Ryan or I say or do. So to have Gage listen on a day where my head feels like it was in a vice and being tightened until my eyes popped like grapes, was to say the least, a miracle! Not only was Gage good but when his sister came home from school they both kept quiet and no fighting and kept being great when Ryan came home from work. I know I need to relish this moment and bring it up on the days of yelling and fighting and wondering will it be hard forever. Parenting is hard and whoever tells you it isn’t is a liar, or on drugs and if that’s the case better share.
So glad I wrote the above the day it happened because almost a week later and feeling insane with the kids and I am contemplating a one way ticket for myself to Europe and return when the kids are married. However I am going to still appreciate the little things. My kids are driving me insane but they are healthy and happy and we have a roof over our heads. Ryan just got a job with Fortis Alberta in High River, a job he has wanted since the day he started the power line journey 2.5 years ago. I am hoping we get our new main floors this week and as soon as they are done, time to decorate for Christmas. Even though I appreciate the little things and try every day to see at least one positive in the midst of eye twitches as Gage and Grae try to out do one another who can yell 'STOP IT' the loudest, I admit I have days I would rather just pull up the covers, turn off the lights and be Debbie Downer and say Bah Hum Bug. Life is life and there are ups and downs and twists and turns and I guess what I am really trying to say is let it all happen. The good the bad the ugly and all the gooey stuff in between, because all of it is your story, it is up to you how you outline, write and edit it. Some of the best chapters are yet to be written.

Fell asleep holding a stuffy :)

Don't Let Your Children Read This Post!

Sometimes it's a great day!!!! :)

Just a super short post tonight. It has nothing to do with Down syndrome. It has nothing to do with our perfect peanut. It is a lesson. A lesson that your children watch and listen to every word. They follow every action. They repeat what they hear and what they see.  James and I learnt this tonight....we will attend confession tomorrow and ask to be forgiven...well, James should ask for forgiveness.
I'm pretty sure that I will lose some devoted blog readers after this horrible parenting incident. Forgive us. Well, forgive James!

I was in the kitchen, doing my womanly duties.....heating up the shepard's pie that my mom dropped off for us!
James came into the kitchen and started to dry hump my butt. I tried to push him away and said that his daughter was right behind him, watching. What happened next will be forever engrained in my mind. James backed off, his daughter came up and started to dry hump my leg.

I'm sorry Brinley. Daddy has coverage for therapy and mommy will buy you a pony.

Happy birthday peanut! You also have therapy coverage!

Poop....again! Sorry!! :)

I've been a slacker lately....maybe it was the 31 for 21 Challenge that did me in.
Life has been busy with lots of play dates and appointments for Adele. Man, she is high maintenance, but we still love her lots. :) I met with the FSCD worker to discuss what kind of funding and extra assistance would be needed for Adele. I told her upfront that I haven't heard one good thing about FSCD, only negatives, from doctors, nurses, friends who work in similar programs and friends who have children with disabilities...I prefer to call them abilities. :) I told her that this little girl is our world and that we expect supports that are necessary for her to thrive. I needed to be honest and I needed for her to know that James and I expect only the best. She was positive and seemed receptive to my comments.

We also went to the Child Developmental Centre and that was a waste of time. It takes an hour to get there and more when we have a snowstorm the night before. We got there and I checked in, the receptionist told me that my appointment had been cancelled because the worker went home sick. She asked if anybody had called me. Ummmmm.....no.
I told her that I drove all the way from High River and somebody better meet with me, even the cleaning lady, I don't care.
The OT met with us but the first thing she said was that we could have done this over the phone. Sigh.
She was happy with Adele's progress and was pleased with how she was doing in regards to her development and milestones being met.
Let's be honest, I only want to go to the CDC when absolutely necessary. My time is valuable.....sort of. :)

On the other hand, while Adele and I were waiting for our sort of appointment, this lovely lady was waiting as well for her meeting. She loved Adele and asked questions about her health. Again, it was one of those moments that made me smile. She has adopted many children over the years, all with disabilities as well has fostered many children. She was such a beautiful person. I thanked her for what she has done for others. What a model citizen. There are so many good people in the world. With all the crap in the media, I wonder sometimes what is happening to our world.
The other thing that has made me smile lately is BatKid! Way to go San Francisco on coming together to make a boy's dreams come true. Those stories make me smile.

Had to wear my housecoat!

We had Music Therapy with Jimmy on Friday. He is so wonderful with the girls. He cares about them, calls them by name and sets boundaries and rules with Brinley. He knows his stuff and I like it....good man!
Brinley felt more comfortable this time and went right in and pounded on the piano. Jimmy is trying to get Brinley engaged more and to spend more time on each instrument. She is getting there!! Jimmy decided that we would have our own mini music session. We used the drums and did an activity that he does with brain injured clients. He said that I was doing a pretty good job. PHEW!!! I have to tell you, I held my breath the entire time and got myself a little stressed out. I need to relax during my music therapy classes. ;)

All in all, a busy week but always wonderful and always wickedly awesome if Adele stays healthy!

A friend gave me an idea to write a letter to Brinley and to talk about how she is now as a little girl.

Dear Brinley,

I want to start this letter by telling you just how much I love you. You brighten up mommy's day. You make me smile and you test every ounce of my patience. I recently said in a post that being a stay at home mommy isn't the hardest job in the world but I would like to go back and perhaps edit that comment a bit....it is freaking hard some days and I do feel like it is the hardest job in the world!

You are becoming a beautiful, little lady. You are 20 months old and a little spit fire. You are calm and relaxed and cuddly, then you turn around and whip attitude out like no other. You get moody and you sometimes slap me in the belly, the arm, the face, the leg, the butt, the head and any other body part that you can reach during your time of spaz out. I don't believe in hitting back because what does that do? Nothing. It teaches you that when you hit mom it's not ok, but when mom hits you, it's allowed. Mommy will tell you that if you ever bite me, I will bite you back and you will learn your lesson. I don't care about the previous comment about being a good role model and not being a hypocrite, but I don't do biting. I will bite you! If you get sad and upset and want another mommy, I will provide you with the Kid's Help Phone number and you can call and cry to them about how mean your mommy is and that she bites you. I will even provide you with a box of Kleenex.
Mommy was thinking about potty training you now but I realized that you aren't quite at that point. You are showing interest but we will wait a few more months. I have to tell you that the older you get, the bigger the poops and the bigger then mess and the more mommy gags. Your daddy thinks it's funny when we eat corn the night before and then you poop it out the next day. He laughs. You will soon learn that boys are special. They are silly and they don't ever really grow up. Whether you find a male partner or a female partner, just make sure that they won't mind wiping your ass when you're old. Get that information in the first few weeks.

Just a little pooping story for you....
Mommy woke up one night and felt ill, really ill. This was long before you. I asked daddy to go into the other room because I just needed my space. I needed to be ill on my own. He left. Five minutes later, mommy realized that she had the flu or maybe she had had eaten a case of prunes that day and forgot!
Mommy shit the bed, shit on the floor, shit on the bathroom mat and shit on the toilet before it actually hit the right place.
Mommy went to get daddy because mommy just felt so awful and needed daddy's help. Mommy walked in the spare bedroom and woke daddy. Mommy was crying and told daddy that she shit all over the place. Daddy got up, grabbed the Lysol, rubber gloves and cleaned up all of mommy's shit. I knew at that very moment that Daddy and mommy would last forever.
I think mommy got off track and is thinking that perhaps you will not be given this letter. Mommy needs to get her lack of ability to focus for longer than three minutes checked out by the doctor.

Love,
Mommy
xo

Sometimes this is how we roll!

Boots, diaper, soother, belly sticking out and no shirt!

 

 

Adele's Video. If you haven't had to chance to watch it. Feel free to share! :)