15 October 2013

Her Story....


My name is Chrissy and Krista is a dear friend of our family. Along with being Down syndrome awareness month, October is also Pregnancy and Infant Loss awareness month, and today, October 15, 2013 is the official day of remembrance so I want to share a little of our story. I have 4 beautiful children “at home” - that is how I answer when people ask how many children I have. They are 7, 4.5, 2 and 4.5mths. But I also have two beautiful babies in heaven, one I never got to hold or even see, and one I held and saw her beautiful face, despite her never taking a breath.

 

Katie, Morgan, Rachel and Liam
 
 
My first loss was in October 2005, a miscarriage at 14 weeks, it was devastating. We were so excited, had the nursery started and were dreaming of meeting our baby. I closed the door to the nursery, cried a lot of tears and tried again right away. Almost 1 year later I had our beautiful daughter Katie. I fell in love so deep I had no idea it was possible and I wanted to experience it again. When Katie was 10 months old we conceived again and we were thrilled. After an anxious pregnancy with Katie I was able to let go and enjoy, thinking we’d had our rough time and were now in the clear. For 26.5 weeks I was blissfully ignorant, and enjoyed my pregnancy. February 3, 2008 everything changed. I had some cramping and spotting, and couldn’t remember the last time I had felt babe move. I called my midwife and we met her at the hospital. I remember saying to Bryan “what will we do if they put me on bed rest”. I was in denial; I kept convincing myself that I felt the baby moving and everything would be ok.
 
 
 
Katie and Mommy
 

Many things happened over the next several hours, some things were very traumatic but the outcome was unchangeable, our daughter had died. I was crushed in every way possible. I had never known this kind of pain. I knew what it meant to hold my child in my arms, see her look at me, know me as her mother, and all that came after that. Mostly I knew the love, and that love had been growing for 26.5 weeks already and it was fierce. I was never going to get to do any of the things I had looked forward to. Two days later I gave birth to our 1lb 10oz baby girl and she was beautiful, but not in the ways a parent dreams about. It was obvious that there was something “wrong”, and testing confirmed it – our angel had Turner Syndrome. Turner Syndrome occurs when females have only 1 X chromosome, instead of the usual 2. Males have 1 X and 1 Y chromosome. Like other genetic abnormalities people with Turners can live long beautiful lives, but it also predisposes them to hosts of health issues. For Gabi there could not have been any other outcome as her “condition” could not support life. Had she been born alive the time we would have had with her would have been very brief. We had chosen not to have ultrasounds in our pregnancy, had we had any we would have known she was not developing normally, and may even have been advised to terminate the pregnancy.
 
 
 
Gabbi’s footprints
 
 
I feel we made the right choice, but sometimes I wonder if we were cowards, if we weren’t brave enough to make the decisions that would have been put to us….that it was just easier to leave it up to God. When Krista shared their initial testing results with us my heart just broke for them. I wished she wasn’t living the nightmare I had feared and avoided. I wasn’t sure how to support her; I knew what it meant to have a baby die but nothing about what she was dealing with. Shockingly though a part of me was jealous, and still is…why, because she gets to hold and raise her daughter. Talking with her made me question our decisions, ask “what if”? I wished I could be as brave as her. And I felt ashamed because I would be lying if I didn’t admit I am at times relieved that I am not raising a child with special needs, maybe God felt we weren’t strong enough to do so. Mostly though I do stand by our decisions, as our outcome wouldn’t have changed…maybe I would have gotten to gaze into her eyes as she looked back at me, maybe I could have told her I loved her and she would have heard it, but at what cost to us all?  
 
 
Gabi's candle
 
 
It will be six years in February since Gabi left us, and at times it hurts as much as the days everything was happening. I have 4 beautiful, healthy children whom I wouldn’t give up for the world, but I also would give anything to raise Gabrielle, special needs or not. Her conception and death may have been just a “series of events” in our lives but the impact she has had on us is forever. My husband always says that time doesn’t heal, it just gives you distance and perspective. That is certainly our experience. I used to adamantly answer that I was the mother of X number of children and include Gabi and our other lost baby in that number. At some point I gained some perspective, I didn’t have to mention then in every conversation to ensure they weren’t forgotten, and began replying with “X number of children at home”. I talk about Gabi very openly and if you come into our home she is there – her candle, with her name on it sits in our living room, her photograph and urn are in our bedroom. As a mental health nurse I see everyday the impact that trauma has on people, and how it affects them, losing children is traumatic. We need to support each other as women and mothers in all the trials of our lives, whether it is losing a baby, at any point in pregnancy, or raising a child with special needs, or just having a bad day. Celebrating the fun and happy times is the easy part…anyone can do that…not anyone can listen when we cry in pain, grief or frustration. Thank you for “awareness” months and days, and for people like Krista trying to bring awareness on a daily basis by sharing her story. And thank you for reading my story. Much Love, Chrissy
 
 
 
 




14 October 2013

I am THANKFUL!

Day 14 of the 31 for 21 Challenge....
I don't have pictures of all my dear friends and relatives, but you know how much I love you!

What I am thankful for....


Brinley
 
 
Adele <3
 
 
Brinley
 
 
Adele
 
 
Brinley
 
 
Brinley
 
 
Adele's smile!
 
 
Adele's beauty
 
 
Beautiful Brinley
 
 
Sisterly love!
 
 
Brinley - 6 weeks old
 
 
Brinley, Adele, Danika and Ryder
 
 
My amazing husband!
 
 
Friends
 
 
Vacations with James
 
 
Momma



Kindergarten friends
The three of us in grade 9
 
 
Crazy times with friends!
 
 
Daddy
 
 
I am thankful



**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 16, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)
 
 
 
 
 
 
 
 
 
 

13 October 2013

Happy Thanksgiving!

HAPPY TURKEY FARTS TO ALL MY CANADIAN FRIENDS!
 
 
 
 
HAPPY OTHER FARTS TO ALL MY AMERICAN FRIENDS!
 
 
 
HAPPY FISH AND CHIP FARTS TO MY FAMILY IN ENGLAND!
 
 
 
 
HAPPY WHATEVER FARTS YOU WANT, TO MY FRIENDS IN OTHER PARTS OF THE WORLD!
 
 
 
 
**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 16, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

12 October 2013

Life is BEAUTIFUL!!

Driving to Kayben Farms!


Today we went to Kayben Farms by Okotoks. It's Halloween time!
There's a bouncy parachute type thing for the kids, crafts, wagon rides, animals, little go karts and much more. Brinley had fun and didn't pull limp baby today. So nice, what a treat.


Loves swinging!

It was packed today and we were the only two adults in the whole place wearing flip flops. We lost all of our shoes in the flood and just haven't thought about boots! I guess it's time to head to Payless and stock up since the snow has started to fly.


Adele posing with her dad! HA! HA! HA!

It's funny because those who are comfortable with themselves and who are confident people are the ones who come up to Adele and pay her compliments. Others stare and wonder why she has oxygen. I take no offense when people ask.
It's funny though because I explain that she is on oxygen because she was 5 weeks early. Is she also on oxygen because she has Down syndrome? I don't really know. I think so. She's super strong but super floppy, so I guess that's why she's on oxygen. I just don't think it's really necessary to say that she has Down syndrome. I don't think I need to tell people everything. Do I? I'm so new at this. I won't have to explain when she's older because people will see the Down syndrome. Her features will be more prominent. I think that as she gets older and if people stare, I will say something. If you have a question or concern, I would love to explain. Who knows, maybe nobody will even care. I also have to realize that people may stare because she will be so darn cute!!

Hmmmm....I worry myself with silly stuff. I don't need to explain anything to anybody. Here's my child, her name is Adele.


Enjoying all the sights at Kayben!



All smiles!

James and I had Adele in our bed last night after we put Brinley down. It was a moment of love. I love it when James cuddles with his girls. I love the look in his eyes when he talks about his girls. It's just magical. As we were laying in bed, he had his head on his pillow and Adele was right beside him, she was looking at him and he told her that he loved her so much. These moments are what I live for....these are the moments that take all the unhappy crap away. He looked at me and said how much he loves his family. It's such a beautiful life with these girls.

When I went out yesterday with the girls, that was around 12:45pm and as I was driving along Longview Trail, there were two little kids playing rather close to the road. I was concerned but I kept driving. It's a very busy road. The speed limit is 50 km/h but I know that most people go at least 60 km/h.
When I was coming home, I took the same road. It was around 4:00pm. The kids were still there, in the same place. There was a big rock in the road, as I passed it, the kids ran out to move the rock. So unsafe.
I turned the car around.
The little girl saw me and started to run. The little boy hid behind a tree. I guess I'm scary looking.
I rolled the window down and in my teacher voice I yelled "if you don't get back here right now, I will follow you home and talk to your mom. Get over here!"
There was a little hesitation. They came to the car.
I asked them what they were doing....they told me that they were just playing.
Ok, just playing beside a very busy road.
I asked them if their mom knew that they were playing over here?
Yup, they claimed that she was fully aware.
The kids apologized for being there. I'm pretty sure the boy peed his pants thinking that I was going to give them a whoopin.
I explained how dangerous it was and that I had two little girls in the car. What if I hit you? What if somebody else hit you?
Go home kids. I know that High River doesn't have too many parks right now because of the flood but you need to play in your front yard or find a park with your mom.


Yup, that's snow!

I can't wrap my head around what happened. As a mother, should you not be aware of where you elementary aged children are playing? Shouldn't you be with your children? This scares me. It scares me that there are parents out there and they just don't care. I wondered if a parent was actually home?? Don't do that to your children. Take proper care of them. It is your job.

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. After you have clicked on the badge, you can check out other blogs too. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 16, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)


 

11 October 2013

Friday Night at Wal-Mart.....



Always need my sunglasses on....upside down!

It was a busy day today.
I had a doctor's appointment, so the girls and I headed into the city. I needed to weigh Adele too as per the pediatrician. Adele didn't gain any weight the week after her release from the hospital. She was up today to almost 9 pounds. She's doing well. I am so OCD about her feedings, her poops and her breathing. As I have said before, I can't wait for her to get stronger and bigger.

After the doctor, I left with the girls, obviously, and we headed across the parking lot to the car. While I was carrying the car seat, the oxygen tank, my purse and I was holding Brinley's hand, she decided to do limp baby. ARE YOU KIDDING ME? I was parked at the other end of the parking lot and Brinley decided that she wanted to be funny and silly and she dropped, all 30 pounds and was dragging her feet. I then decided that because she is a smart little girl, I would be able to reason with her....it should work.
No movie if you don't walk.
No treats if you don't walk.
No going out tonight if you don't walk.
You can no longer call me mommy if you don't walk.
Your father is leaving us because he's embarrassed that you aren't walking properly.
You will never get a puppy if you don't walk.
You were adopted.
NOTHING WORKED!

Now, I'm pissed. GET UP! GET UP! GET UP!
A car is coming towards us! The car stops and the lady is laughing. HA! HA! HA! HA! HA!

Made it to the car and turned the movie on. She won! She's 19 months. I am 36!  It's a sad day.

Tried for hours to sit in the high chair :)
 
We made it home and decided to go out for dinner. We headed to Okotoks for some dinner and to run some errands.
While at the restaurant, the waitresses were excited to see Brinley and complimented her on her beautiful eyes and all her cuteness. One of the waitresses went over to see Adele and I heard her say "OH."
Now, I don't know if it's because of the oxygen or because she was sleeping or because she is so darn cute...I'm still unsure. It couldn't be because she has Down syndrome. You can't really tell right now that she has it....sometimes I see it and sometimes I don't. All I know is that you better tell me that my kid is cute and adorable after you compliment the other one. Do for both! If you read my post yesterday, I have thought more and more about how a child should look with Down Syndrome. Is there is a particular look? A Down syndrome look? When somebody says to you that your child doesn't look like they have Ds, is this saying that they are cute?? If they tell you that your child has a lot of Ds features, are they ugly? I'm unsure. Is it just a comment? Is it an insult? Are kids with Ds not very attractive or if the features aren't prominent and they look more 'normal', does that make them attractive? Cuteness comes in many forms, many colours, many races. I've seen many ugly people who are considered 'normal' and many children and adults who have Ds who are beautiful. It makes me sad how uneducated people are about certain genetics gifts. I think this is a subject that I could write about over and over again. I'm not too sure if anything that I just wrote makes sense. I may have just totally confused myself. :)


Who lets their child sleep like this? Cruel!

We went to Wal-Mart. Yes, that is what we now do on Friday nights. We slum it at Wal-Mart.
We wanted to get Brinley some winter boots. I can't justify spending 100 bucks on new boots when her feet are growing an inch every day!!
Our perfect child (except for limp baby), the one who gets told almost daily that she is so quiet and sweet and well behaved and that we are so lucky, decided to whine and whine because she wanted to get out of the cart.
We took her out and BAM, she was gone. Running through Wal-Mart and laughing. LA LA LA LA LA. James would catch her then she would whine, so he put her down again. AND......RUN!!! Laughing and running and weaving in and out of the racks.
I can't run. I just ate dinner. I would get diarrhea! James ran.
We decided to cut the shopping spree short.
Positive from the night...I controlled my spending.

I was carrying Brinley out of Wal Mart, sort of upside down and twisted with her belly hanging out and she was making crazy loud noises! Oh look!! There's our policeman friend, he's waving at me. I'm kind of glad that he was on his phone and dealing with an incident that had happened at Wal Mart. It's embarrassing when your perfect child is overtired and acting like a turd.
I looked down when we got to the car and noticed that my dress was pulled so far down that my bra was hanging out. My boobs aren't big enough to hang out, so that wasn't an issue.
I guess I fit in well tonight at Wal-Mart.

As we were driving home, I was making some good cracks and commenting to James that I'm pretty funny and other people think I'm funny too.
He burst my bubble and said that they don't have to live with me.
I stopped laughing.

Makes up for the limp baby!! :)

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 16, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

 
 

10 October 2013

Still Learning.....






Back in the day :)


My post from yesterday talked about how some friends and family have stated that Adele doesn't look like she has Down syndrome and how it really doesn't bother me. My dear friend Jenny left this comment for me today and it really does make sense. It made me see what things may be like down the road, when Adele gets into school and when her features are more prominent. I deleted the comments on the blog so it's not repeated...




Brinley - 1 day old :)


Jenny.....


First off, love how the blog looks, who ever did it did a fantastic job!! Second, I feel the same way about the "Downs" thing...
But third, when people tell me Russell doesn't even look like he has Down syndrome, ya, I don't like that. And no I don't take it as a compliment. You may feel differently as Adele gets older. She is a baby right now, and no people may not be noticing. But as she gets older and her features stand out a little more, you may not take it as a compliment when people say that type of thing to you. I guess I take offence because I know damn well people can tell my son has Ds, he has all the features, so when they say "you can hardly tell" it makes me feel like they think looking like you have Down syndrome is a horrible thing. That he would be ugly if he looked like he had Ds. I just don't see how it is a compliment at all when some one says he doesn't look like he has something that is in every cell of his body and gives him a very distinctive look. Just tell me he's cute. Don't tell me he doesn't look like he has Ds. It's a part of him and we are proud of it. Anyway...
I also agree with you though that people just don't know any better and often times don't know what to say. I saw a great post on that on FB the other day. I'll try and find it, it's worth reading. Great post!




CRAZY HAIR!!


Krista.....


Thanks Jenny! I'm sure eventually I won't like it, but right now because she's only been around for 11 weeks, I only have a short list of things that piss me off. As she gets older, that list will get longer and I will get meaner. :)
I totally get where you're coming from. I do just want people to say that she's sweet and cute and she looks just like her sister. People don't know and that's the thing...in their mind it is a compliment and not something that is negative.
When people think of Ds, they have an image in their mind, so when they see a child with milder features, I think it surprises them and they feel that it must be a mild case of Ds....kind of like the flu....just mild. :)
I could hear your sort of anger in your post. I knew that you weren't a fan of being told that Russell looks like he doesn't have Ds, so I was waiting for your response because I respect what you have to say. I value your opinion. I am new to all of this and am learning. I write how I feel that day.




Always posing!


Jenny.....


No, no..No anger, I certainly wouldn't want what I said to come off as angry in anyway. I guess I just feel it's unnecessary for people to say they don't think he looks like he has Ds. But like you said, they think it's a compliment and they are trying to be nice. It's just hard sometimes you know, not to be oversensitive. I think I am in many ways...I take to many things to heart when it comes to Russell. I just love him so much I don't ever want him to hurt, or feel the stares, or be spoken of certain ways. *sigh*...Being oversensitive is something I need to work on for sure.

Love all your posts, I imagine your family and friends are learning so much from what you are putting out there. Oh, and LOVE the little half smiles Adele is doing these days. So stinkin cute :)




LOVE


Krista.....

I meant the anger thing, that it hurts you and irks you. I know you're not ticked at me. :) I hear your anger and frustration when it comes to Russell and how others see him and the comments that have been made towards him and the family. I am dreading so many things as Adele gets older. I'm not the best when it comes to filtering and sometimes it comes out quickly and abruptly. Right now, most of the comments come from kids, they are wondering what's up Adele's nose. It's a simple answer and no feelings are hurt. I give the children their answer and they are content. I am also very overly sensitive. Thank God our kids have awesome parents! :)))

I would love to hear from others who read the blog. Give me your feedback. Let me know how you feel. :)

**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. You can vote once every 24 hours. Just a click! :)

If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 16, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)

9 October 2013

Down's Kids.....

Loves the park!


Day 9 of the 31 for 21 Challenge.....

Just a quickie.....

My momma came over today for a visit and we took the kids to the park. Mom was telling me about the nurse at the doctor's office yesterday, where she had her mammogram. Side note...get your mammograms!


I seriously can't get enough of these pictures!
 

The nurse has a son who is 18, he has Down syndrome. She kept saying Down's kids. I told my mom that it irks me when I hear this, mom was surprised that I felt this way. I feel that I don't want my child to be defined as a Down's baby or Down's kid. That is NOT who she is....she is Adele Jamie Collins, a beautiful baby girl who just happens to have a genetic gift, which is Down syndrome. When you introduce your children to others, do you say "this is my child who doesn't have any learning difficulties or genetic disorders or diseases?"
I'm thinking that you probably say "this is my child, Johnny."
I will not introduce Adele as "this is Adele, she has Down syndrome and this is Brinley, she does not have Down syndrome.


Working hard on smiling!


I get that in the medical world, it will be discussed but do it the right way. Be professional.
I know that I wrote about this yesterday but I think I needed to say a little more on the topic.

I had a friend over yesterday and she had mentioned that her family didn't even know that Adele had Down syndrome, that she doesn't look like she has it. I've had a few others say the same thing.
I've read on a few mommy blogs that this irritates the families. Or if people say that the child must have a mild case because they don't have any of the features.
Do I take offense to this?
Not one bit. People aren't saying this to be rude or derogatory, they just don't know a lot about Down syndrome. They are trying to pay you a compliment....in their mind, it is a compliment. It could be taken either way. Is it insulting because kids with Ds are not attractive?? Is it kind because they just sort of said that your kid is cute?? I don't know.


Happy face :)


I know that before Adele, I didn't really know a lot about Down syndrome. I've never taught any students with Ds. I used to spell it incorrectly, Down Syndrome. Nope, it's Down syndrome. I could see myself telling somebody that their child must have a mild case because they look non Down syndrome. :) People don't know. People don't always know what to say. People don't know if they should feel sorry for you or pat you on the back. People don't know if they should be mad at you for giving life to a child when you know that they have Down syndrome. People don't know if they should praise you and call you a martyr. People don't know......


Darn nose prongs!


All we can do is educate others. This is why I write the blog. This is why I am trying so hard to get my name and my story out there. I wish more people would share the blog. As I've said before, these two girls will change the world.


**You may have noticed the Top Mommy Blog badge on my page. Feel free to click on it. One click counts as one vote. You can vote once every 24 hours. Just a click! :)


If you want to rank my blog or leave a comment.....I am in the Special Needs section....I am number 19, I need to get to number 1! I am not doing this for my ego, I am doing this because this journey is important to me, it is important to share and to hopefully educate, entertain and show others that it can be done. I've said for a while now that these two girls, with the help of family and friends, will change the world! :)