A Perfect Extra Chromosome

23 January 2014

Childhood Memories...

Ange and I at my aunt and uncle's wedding :)

As I was laying in bed last night, I was thinking about how our lives get into such a routine that maybe sometimes we forget to let loose. I was thinking about all of the fun things that I used to do as a child and wished that I could re-live some of those moments, just some! I actually came up with a list. I'm wondering how your list compares to mine. I guess if we are around the same age, there may be some similarities.

1) Run through the sprinkler
2) Jump on a Pogo Ball in the courtyard
3) Run after the Dickie Dee man to get an ice cream....you know when he used to ride a bike instead of driving around in a pimped out van!
4) Go door to door, and see if somebody could come out and play
5) Play house
6) Put the mattress on the stairs and slide down it over and over again for hours
7) Put my hair in pigtails
8) Wear stirrup pants
9) Leave the house in the morning and play with friends until the sun sets
10) Have a birthday party at McDonald's and tour the back and make an ice cream cone
11) Make a Slip n Slide, pour liquid soap on the plastic and turn the sprinkler on
12) Eat raw hot dogs
13) Call friends and chat and laugh and just be silly
14) Pin my jeans around my ankles
15) Go swimming at Acadia Pool
16) Go on road trips with the family and visit The Enchanted Forest
17) Walk to 7-11 and buy a slurpee
18) Skip rope and not die
19) Play Barbies and Transformers and make believe games
20) Go to Harvey's Restaurant with my grandparents
21) Go to the Ice Capades
22) Speak French in front of others because it made us look cool
23) Wear overalls
24) Lose my teeth again and have the Tooth Fairy leave a dollar bill
25) Go camping and wake up early to go fishing
26) Go to the local video store and spend an hour trying to pick out a VHS movie
27) Ride my bike all through Fish Creek
28) Jump and splash in puddles
29) Watch scary movies then be too scared to sleep
30) Listen to the Rodeo Song in secret and giggle with my sister
31) Have sleepovers with friends, eat junk food and giggle until the wee hours of the morning
32) Buy a Mondetta sweater
33) Buy a Chip n Pepper tie dye shirt and look cool - were they ever cool?
34) Send fan mail to NKOTB - make boxers and use fabric paint and send them to NKOTB :)
35) Listen to Cory Hart and pretend that he loves me
36) Play on the monkey bars and slide down the pole - keep your minds clean
37) Wear my Beaver Canoe sweater, crimp my hair and put on a jean jacket and blast Tiffany
38) Play on our Commodore 64
39) Build a pillow fort
40) Play with my Cabbage Patch - the real one, with the yummy smell.
41) Listen to my Strawberry Shortcake album
42) Flip through old photo albums
43) Play hide and seek and get that feeling like you are going to pee your pants when you're hiding
44) Play hopscotch
45) Make ghost gum with your marshmallows
46) Go to the mall with friends and shop at HMV
47) Pretend to smoke Popeye cigarettes and feel naughty
48) Get new pajamas and be all excited for bed time
49) Eavesdrop on my parent's parties
50) Going through the Sears catalogue and circling and cutting out things we wanted

So many memories. :)

A little therapy!

A little Adele update. We went to ACH yesterday for a therapy appointment and it went really well. I was the only person in flip flops but I like to make a statement!
We met our genetics' counsellor, Karen for lunch. She has become one of our dearest friends and she keeps spoiling James and I and the girls. I think we will keep her around ;)
Adele is getting a lot stronger and she isn't as floppy. I don't think we will get going on solids just yet, I need for her to have better control of her neck. There's a window for feeding solids and as long as we don't wait too long, it should be fine.

Fell asleep on mommy. Best moment :)

I also made a phone call to Cause and Effect out here in the Foothills. Leslie, the director is absolutely amazing, kind and caring and you can tell that she loves what she does and makes it a priority to help out the families. I told her that I felt like Adele wasn't getting all of the services that she should be getting right now. I'm sure people laugh hysterically at me because she is only six months, but in my opinion, it's time to get going. I don't have unrealistic expectations, I just want Adele to reach her full potential. I am not a Physical Therapist or Occupational Therapist or Speech Therapist. If you show me, I can work with her at home but if I am left to figure things out, we could all be in trouble.
When we went for Adele's Respiratory appointment last month, the PT came in and said that Adele was a bit floppy and that it would be difficult to do some neck exercises. That was it. I wasn't shown any exercises, just told to work on her core. I thought that most babies with Ds are floppy and require PT, so shouldn't that be her field of expertise?
I find myself getting frustrated sometimes in that it is up to me to find the resources and scout out supports. I understand that as a parent, you need to do some leg work, but if you aren't familiar with Ds and the supports that are available in the community, it's difficult and very frustrating.
Anyways, Leslie from Cause and Effect will be coming out next week to meet with Adele and myself and go over some options. I feel like we are in a good place with what supports I am getting in place. It's so important to be proactive.

Our tag for the baskets minus the business label across Adele's face :)

Lastly, I haven't mentioned in the blog yet that Adele and I have set up a project to help new families who give birth to a special miracle. Our project is called Adele's Over the Rainbow Baskets. Our goal is to start with 20 baskets filled with donations, plus I will include a package filled with resources that families can access after they go home from the hospital. I am in the process of collecting adorable and sweet baby items from friends and families. The response has been just fantastic. I am so fortunate to have such amazing people in my life.
Thank you to everybody who has donated. Your generosity it greatly appreciated.

I want to get to 100 000 views by April. I am at 81 135 right now. If you share my blog, tag me in the post and you will be entered in a draw for a great prize!! If you are sharing again today, you will have another chance to win! I will mail it to anywhere in the world. My goal...get the word out. Bring reassurance to families. Bring comfort and joy to those who are struggling. Lots of shares so far! If we are not friends on Facebook, send me an email after you have shared, at krowland23@hotmail.com. <3

20 January 2014

Stretch Marks and Babies....

Loves the outdoors!

Last night, I had a really great conversation with a good friend. We talked about how much our bodies have changed since childbirth. We are two very different people, well, when it comes to body shape and age. Kelsey is in her 20's whereas I am in my late 30s. Kelsey is a model, whereas, I am not! :) As women, we are so critical of our bodies and feel the need to compete with the skinny jeans mom. I don't look the same as what I did when I was 20. I don't look the same as when I was 30. I got to where I wanted to be when I was teaching, then met James and it all went downhill. ;) What happens when you get married? You get comfortable and fat! You eat pasta, you order food, you go out for dinner, you go out with other married friends for dinner, you go our for ice cream with the kids, you go to McDonald's because there is a play place and it's quick and easy, you don't go bar hopping anymore, you sit on the couch and watch TV with the kids, you go to bed early, you try new recipes that require cream and not skim milk, you get comfortable. It's almost like you have somebody now and you become this person who doesn't care as much because there is no more searching, no more dates, no need to get dolled up, no need to impress. You kind of let yourself go. It's not how we all roll, but it's sometimes how I feel. I need to get the confidence back, I need to get my body back. I don't care so much about the baby stretch marks. I made two beautiful girls. I earned every line. What I care about is how I feel as a woman. How I feel about just me, Krista. I want the feeling that when I walk out of the door, I want the gods to sing my praises, I want to hear halleluiah, you look fab Krista. I want to feel super! I've ran into a few friends lately and they have said that I was lookin' good, the first thing I do is argue with them. I usually say that I have so much work to do. I'm far off from where I want to be. I don't ever just say "THANK YOU."

Hanging out at the park!

My conversation with Kelsey....

KB...

Well I got lots and lots of scarring and big c section scar that I ripped open too. Remember?

Were you asked a day after you gave birth to E?

I was 4 months!!!!!

KB...

No it was several months later when I had a beer in my hand.

KR...

I felt so deflated, I bet you did too.

My ego, that I already don't have went so far into the crapper.

Almost!!

KB...

I didn't even feel like I looked pregnant and still got asked a couple times but then when I was pregnant nobody said a word ever.

I would go to the gym and people would look at me like "is she? Isn't she?" And I wanted to just scream "YES JEEZ."

KR...

Honestly!!!!!!! I am up 50 pounds since I got married. Thank god for being tall but I seriously need to get it together. It's hard when you stay at home with the kids and meet friends often for lunches and dinners.

KB...

And I've had a few people pinch my belly or my arms. Just rude.
I'm still up about 15 from before I got pregnant but I'm comfy with it. People tell me now I looked gross then as if that's supposed to help.

KR...

Are you kidding me?? People have no tact. You do look really great! Truly!

I don't allow anybody to take my picture.

KB...

You look pretty!

KR...

Thanks Kelsey!!! I'm not like all locked up in my house crying myself to sleep at night because I have no self esteem. That drives me nuts!! Just need to get where I want to be. We are so critical of ourselves and the older we get, your body gets more loose!

KB...

I know but as far as our bodies go they will never be the same as before but I think that that's beautiful because it shows what we've gone through. Especially US. But if some changes help to improve self esteem I'm all about that.

Napping on dad :)

Kelsey also sent me a link to another blog. When I read this post, I enjoyed it and felt like all moms could relate. Yes, her body is pretty good but we don't know how it looked before her baby, so I tried not to judge....too much. ;)

We Seek Joy.
"Babies Ruin Bodies"

An Ode to my Postpartum Body.

Before I became pregnant, someone told me, "don't have a baby, babies ruin your body."
It has been over a year since Anabel began her life. This time last year she was a microscopic speck inside of me, and we were announcing our pregnancy. Between then and now, I have gained and lost fifty pounds. Four months after her birth, and my body still carries proof of her existence.

I have dark pools under my eyes. A valley where my belly button once was. Hips with a new amplitude that my teenage self wouldn't recognize. I have lines mapped across the mountains of stretched skin left over on my midsection. Lightening bolts on my sides proving I once was too small to contain all of the love that filled me. Lines indicating that my daughter once lived inside of me.
Do you realize the significance in that? Every limb, finger, toe...her heart, even, developed near the very place my own heart beats inside of my chest. Those mountains of skin are all I have left to prove that we were once one and not two.

How can I be ashamed of that?

I have so much to say about seeing my grandfather's eyes embedded into the sockets, and under the brows and lashes of her father's. I see the seventeen year old boy I fell in love with, and my grandpa as a child all at once every time she looks up at me. She even wears my ears and my chin. The two very things I cursed having the most growing up. Not much makes me feel more beautiful than seeing tiny renditions of those same features on Anabel, and realizing just how special they are.
My body grew that.
Not everybody has that privilege.
Sure my belly is a bit softer nowadays, but the way it moves when I jump up and down sends my girl into fits of giggles. And yeah, my hips are hardly as narrow as they used to be, but they sure know the perfect figure-8 motion to sway her to sleep. My twenty-one year old hair is even beginning to gray, but not much soothes her more than my hair between her little fingers.

I am not something flawless in the eyes of society, or even close to what I once was physically, but my perfect girl sees me for who I am.

To her, I hang the moon.
She knows my heart - she knew it long before we met.
And she loves me for it.

I cannot tell you how much worth and validation I feel because of that truth.
My body is only a vessel for my spirit. An incredible vessel. It is strong, well, abled, and undefeated.

My body is full of life.
My body is powerful.
My body made me a mother.

If anything, I was ruined by the world before I knew her, and she made me whole again.

I want to get to 100 000 views by April. I am at 80 225 right now. If you share my blog, tag me in the post and you will be entered in a draw for a great prize!! If you are sharing again today, you will have another chance to win! I will mail it to anywhere in the world. My goal...get the word out. Bring reassurance to families. Bring comfort and joy to those who are struggling. Lots of shares so far! If we are not friends on Facebook, send me an email after you have shared, at krowland23@hotmail.com. <3

Love my Hugaboo!!

17 January 2014

Facebook Complaint!

I have sent this letter out to several TV stations here in Calgary as well as several in the States. I have disabled right click on my blog, but if you would like to share the letter, please send me an email and I will send it to you. Thank you.

To Whom It May Concern:

On Thursday, January 16th, 2014, I was perusing photographs and reading stories on one of the Down syndrome sites on Facebook. I have joined several sites that support parents who have a child diagnosed with Down syndrome. These sites are to connect with others and gain knowledge on a topic that we were not familiar with before getting pregnant with our second daughter, Adele.

http://aperfectextrachromosome.blogspot.ca/

I came across a message from a young adult that read “fuck u retards” and he tagged one of his friends in the post. I was so disgusted but knew that if I reported the comment to Facebook, they would take action as this goes against their Community Standards.

Hate Speech
Facebook does not permit hate speech, but distinguishes between serious and humorous speech. While we encourage you to challenge ideas, institutions, events, and practices, we do not permit individuals or groups to attack others based on their race, ethnicity, national origin, religion, sex, gender, sexual orientation, disability or medical condition.

The response that I received from Facebook.

This post wasn't removed

Thank you for taking the time to report something that you feel may violate our Community Standards. Reports like yours are an important part of making Facebook a safe and welcoming environment. We reviewed the post you reported for containing hate speech or symbols and found it doesn't violate our Community Standards.

I am confused as to why this would not be removed as it does clearly go against the Community Standards on Facebook. It is verbally attacking others based on a disability. It is verbally attacking all 118 000 members.
I understand that this is possibly an isolated incident by this individual, but it’s the fact that the policies and guidelines were not followed and respected and that Facebook refuses to take action.

There are millions of teens being bullied and abused on Facebook on a daily basis and because Facebook refuses to disable the accounts or reprimand these individuals, young kids are taking their lives, bringing weapons to school and taking the lives of others. When will this come to an end? When will social media take responsibility and accountability for the policies and guidelines that they have set up by owners, lawyers and shareholders? The situation that took place on the Down syndrome site is one of many incidents that are occurring on a daily basis. This needs to stop. We need to take a stand. We, as a community, need to take on the large social media sites whose care and concern revolve around revenue, not around the well being of its users.
It’s not socially acceptable to post pictures of a woman breastfeeding her child on Facebook, but it is acceptable for a fourteen year old girl to bare her breasts to others without the photo being removed. It is acceptable to make hurtful and unkind comments toward others, this is what Facebook is teaching our children, this is was is being encouraged and condoned.

I am so disappointed in Facebook and the lack of respect and total disregard for innocent individuals and their families.

I am bringing this to the news and writing this letter on behalf of millions of parents, children, grandparents, relatives and friends of those with a disability who are bullied and not supported by the community and by a social media outlet that doesn’t back its policies.
I appreciate you taking your time to read the letter and would be grateful if you made your viewers aware of this ongoing concern.

Thank you
Sincerely,

Krista Rowland-Collins
Krowland23@hotmail.com

Today is a really great reason to share!

I want to get to 100 000 views by April. I am at 79 000 right now. If you share my blog, tag me in the post and you will be entered in a draw for a great prize!! A really great prize. If you are sharing again today, you will have another chance to win! I will mail it to anywhere in the world. My goal...get the word out. Bring reassurance to families. Bring comfort and joy to those who are struggling. Lots of shares so far! If we are not friends on Facebook, send me an email after you have shared, at krowland23@hotmail.com or comment below. <3

13 January 2014

Holy Shit!!!

Sometimes you just need to drink! :)

Just a couple of thoughts today.

First, I don't have PMS, well not today.

James was heading out to a job today and the weather sucks. The roads are brutal and it's icy. He told me that he would text me as soon as he arrived on site to let me know that he was safe. After two hours, I started calling. No answer. I texted. No answer. I started to panic after calling three times. He always checks in and he never forgets.
After 3 hours, I was teary. I don't usually get all panicked but I was today.

The phone rang, it was my mom telling me that James had just stopped by to pick up the passport forms and that he just left. I started bawling. I told my mom that he always checks in and he didn't this time. They got caught up in a big Disneyland conversation and lost track of time. I realized today that I still love my husband and want him around! Maybe these scary moments are needed to make you realize what you have and to not take those you love for granted. I'm good now for a long time.

Cirque Du Soleil??

My next thought. I recently partially read a blog that was sent to me about babies and kids. I had been meaning to write a blog on the very same topic, so here is my version. :)

As parents, we are told to do this, do that, don't do this and don't do that....it goes on and on.
Years ago, there were no baby monitors, now we have the monitor that detects baby's heartbeat and breathing. We have the video monitors that allow us to talk to our children to tell them to go back to sleep without even leaving the couch. We were told to put them on their bellies to go to sleep then we were told that if you put your baby on their belly there is a greater chance of SIDS. Put your baby on their back. If your baby has reflux or is congested, elevate your baby, put a wedge under their mattress. No, don't elevate your baby anymore for any reason. Lay your baby on their side, that works. No, don't put your baby on their side. Use pretty bumpers in the crib. No don't use bumpers because your baby will suffocate. Your baby has blankets and a stuffed animal in their crib? That is so unsafe. You only have your child in a sleep sac with no toys? You are a bad parent. Use a mobile over the crib, this will help baby to fall asleep. No, don't use a mobile because baby will get a flat spot on the back of their head and you'll need a helmet. Your child can't sleep? Put them in the car seat to settle them down. No, that is unsafe. Put your child in the bouncy chair if that is where they are the most comfortable, but not for more then two hours. Put your child in the swing to sleep. No don't put your child in the swing to sleep because it could cut off their oxygen and they could die. If you put your child in the swing, have it on speed three for only fifteen minutes, then second speed for five minutes, then you should remove your child for at least thirty minutes, then repeat steps one through three.

You don't have a sleep routine for your child? You don't have a schedule on the fridge? Your child goes to bed at 8:00pm? That is too late. Your child goes to bed at 6:00pm? You must not like your child. You took a nap away today from your child so that you could go out? That is selfish and irresponsible. You are a bad parent.

You have a Bumbo? That is so unsafe. You don't have a Bumbo? Everybody has a Bumbo. You put the Bumbo on the counter? You are going to kill your child. I only put the Bumbo on the floor directly beside me because I am a good mother and I don't need to make lunch or supper or do dishes at any point in the day.

You only have two children? You must not deal with stress very well. You have four children? What were you thinking? You'll never sleep again. You only have one child? That is so unfair to your child. They don't have a sibling to share their life with...that is so selfish. You have five children? You can't afford vacations. You can't afford post-secondary. You don't have enough love to give all five children.

Use a soother to calm baby down. No, don't use a soother because your child will end up with buck teeth and you'll be up to your tits in dentist bills.

Breastfeed and do everything possible to get your boobs working. If you don't breastfeed, your child will get sick, all of the time. Your child's IQ will be lower and there is a greater chance that your child will have two more bouts of diarrhea during their childhood years. You should give your baby formula because breastfeeding in public is gross. Whipping your boobs out for all to see makes it very uncomfortable for others. Put your boobs away. No, you should breastfeed at home and use formula when you are out in public. If you can't breastfeed, you should buy a four hundred dollar pump and take pills and take more pills and if your boobs still don't work, you have failed. Put your boobs away in public.

Your child should be potty trained by the time they are two years old and if they're not, you have failed as a parent and something must be terribly wrong with your child and you. You should be using cloth diapers because if you aren't, you are killing the earth. You are destroying your child's future with all the diapers that you have put in the landfills. Shame on you. You use cloth diapers? You scrape shit off of the cloth diaper and then wash them? You are gross!

Not always in the mood for pictures!!

Everybody should co-sleep so that you have a strong bond with your child. Why are you co-sleeping? You are raising a wimpy child who will never leave your bed and you will suffocate them while in your passed out drunken state. Shame on you for not co-sleeping. Shame on you for co-sleeping.

I only feed my child organic food because I don't want my child filled with pesticides and hormones and by-products. I only shop at that one market and pay an obscene amount of money to keep my child healthy. I fed my child McDonald's last night because she needs to experience all foods and get a taste for everything. Your organic food is filled with more shit then my normal, pesticide food. You are a bad mom for giving your child organic food. You are a bad mom for taking your child to McDonald's.

My child is in French immersion because that is the only way you will survive in the workforce. A child needs at least two languages in today's society. My child is in the full English program because that is the language we speak in this country. You're a bad parent.

You immunize your child? You are filling your child with shit that could kill them. You don't immunize your child? You are putting your child's life at risk and others. My child takes vitamin D and doesn't need to be immunized and we wash our hands regularly. We immunize and vaccinate but my child has been so incredibly sick this year. You don't immunize? You are killing your child. You immunize? You are killing your child.

You gave your child a cell phone? Your child has a tablet? Your child has a laptop? You spoil your kids and you are teaching them that they don't need to value the outdoors. You are teaching them that there is no value in spending time with the family. You are teaching them to be anti-social. You are a bad parent.
Your child doesn't have an X-Box? No cell phone? What do you do all day long? Why would you limit their computer skills? This is the future. It's interactive. It works on hand eye coordination. You are a bad parent.
Your child has a Facebook account? This promotes bullying. Your child doesn't have a Facebook account? How does your child stay connected to the world? This is the future. You are a bad parent.

You wonder why we stress about being parents. Being a parent and trying to do what is best for your kids is not always what is best for your kids but actually it is what is best for that month! :)

A little contest....I want to get to 100 000 views by April. I am at 77 515 right now. If you share my blog, tag me in the post and you will be entered in a draw for a great prize!! A really great prize. If you are sharing again today, you will have another chance to win! I will mail it to anywhere in the world. My goal...get the word out. Bring reassurance to families. Bring comfort and joy to those who are struggling. Lots of shares so far! If we are not friends on Facebook, send me an email after you have shared, at krowland23@hotmail.com or comment below. <3

12 January 2014

Friends? No Friends?

First off, I would like to thank those who have shared the blog with others. I am so fortunate that you want to take part in our journey and that you want to educate yourselves and let other families know that it is possible. It can be done. Keep sharing the blog. Post it on Facebook, email the link to friends and family, Tweet it out..... :)

I wanted to touch on one of my most recent concerns. I have mentioned this before but when I see it posted on another blog or on one of the sites on Facebook that I am a part of, it starts to bother me again.
One mom posted that her little girl never gets invite to birthday parties and that sometimes she is the only one left out. All of the other girls in the class, all of them, are invited, but not her daughter. Other moms then posted their own personal experiences and they were similar.
It made me cry.

My new haircut :)

It made me think about Adele's future. I had the goal this year to take it one day at a time, but it's so hard and I'm already failing. I constantly think about her future and what it holds. I think about if she will have friends. I think that this is one of my biggest concerns.
Some of the moms said that their child didn't realize that they weren't invited, but I don't know if I believe that....I think we need to give our children a little more credit.

When my sister and I were younger, we were encouraged to be kind to others, didn't matter the race, colour, economic status, it didn't matter. What it boiled down to, was, were they good people? Did they make you a better person? Did they encourage you to take part in healthy activities?

Music Therapy - LOVES the piano!

I remember when I was probably around 15 or 16 and I went out with two girlfriends. They both took acid, as I watched. It wasn't a fun experience for any of us. It sucked actually.
After hanging out at the local Dairy Queen, we headed back to my house. One of the girls had a very unhealthy relationship with her mom. She was coming to pick up her daughter and we soon realized that she was drunk. I went downstairs trying to figure out a way to explain to my dad that the girls were high and the mom was drunk. I wanted to throw up because I knew that my dad would be so disappointed in me. I told him exactly what was going on and he came upstairs, didn't lecture the girls or the mom, but made sure that everybody was going to get home safely and that the daughter wasn't in danger.
I didn't get in trouble. All my dad had to do was look at me and I knew that he was proud of me for not doing drugs and for going to him when things got a bit rough. The look of, you know you shouldn't be hanging around them. You know you need to make better choices. You know that if I ever catch you doing drugs, you will never see the outside of this house.

Everyone was always welcomed into our house. My point is that when I was younger, I didn't really even think to be friends with somebody who had Down syndrome. I didn't think to be friends with somebody who was in the ES1 class. They were segregated and isolated from us. The students would maybe join us for music class and gym class but that was it. I remember helping one girl, she had Down syndrome. I was her partner in music class. We would go together and I would teach her how to play the instruments. She would sometimes stop by my other classes to see if I could come out and take her to music. It was pretty sweet. Nobody ever made fun of me and to be honest, I didn't care. I liked her.
I liked her but I would have never invited her to one of my birthday parties. Not because I didn't want to or because I would be embarrassed, it was because I just never thought of it. It never even crossed my mind. Thinking back today, I should have invited her to one of my parties. I should have included her as I bet it would have made her day.

Since having Adele, I see things in a whole new light. I also understand that she will be in a mainstream classroom and she will have an aide. I get that it is more inclusive now. This makes me happy. What parents need to realize is that little ones with Down syndrome get it. They understand what is going on. They have mild to moderate learning difficulties, not severe. They have the same interests as your children. They like Barbies and toys and playing with friends. They like joking around. They like sleepovers. They like to be included.
I want Adele to have friends. I want Adele to wake up every morning and smile because she has friends. I want her to feel loved by others. I want parents to talk to her when they see her at school. I want parents to encourage their children to talk to Adele. I want her to feel loved and appreciated. I don't want to have to explain to her time and time again why she wasn't invited to a party. I know that sometimes parents can feel uncomfortable and maybe don't know what to say. It may be difficult to understand Adele. Who knows how her speech will be. Who knows where she is on the spectrum. It doesn't matter. She has feelings. Children with Down syndrome aren't always happy. Children with Down syndrome have bad days too. They are still children. They are regular children.

Just about there....come on Adele!

When you talk about Adele with your children, you need to explain what Down syndrome is all about. If you are unclear, ask me. I would love to explain to you and your children all about Down syndrome. I love being asked questions. What I don't like is if you stare. If you whisper. Just ask me and I will gladly explain.

It all begins at home. It all begins with the parents. You, as a mom and dad need to teach your children about inclusion and respect and caring for others.
If we didn't have Adele, I don't know if I would have chatted with my children about Down syndrome and how everybody is special and unique. This is why I am writing this blog. I see things differently. I want Adele to be included. I don't want sympathy, that is not needed. I want her to be loved. I want her to be respected. I want her to be happy. I want her to have the best possible life. I want Adele to have a beautiful life. <3

A little contest....I want to get to 100 000 views by April. I am at 76 700 right now. If you share my blog, tag me in the post and you will be entered in a draw for a great prize!! A really great prize. If you are sharing again today, you will have another chance to win! I will mail it to anywhere in the world. My goal...get the word out. Bring reassurance to families. Bring comfort and joy to those who are struggling. Lots of shares so far! If we are not friends on Facebook, send me an email after you have shared, at krowland23@hotmail.com or comment below. <3

8 January 2014

Back to Day 1....

Today was an up and down day.

A good friend of mine called and told me that her friend, who is 13 weeks pregnant, was told today by her doctor that her neuchal is positive. There was no other information given to her and her husband. No ratios. No information on what to do next. No care and no concern. They were told that they could go for an amnio, then proceed with an abortion if they were to find out that baby has Down syndrome. I'm sorry, the doctor said what to you? Tell me again that the doctor, an educated professional who follows a code of conduct, she didn't tell you that you could then go for an abortion?? Right???

What a douche! Yes, I used the word, douche. I've actually used it twice today and think that it will make a comeback and used on people who are incredibly insensitive and cold and unprofessional.

As my friend was telling me about the appointment, every feeling rushed back. Every feeling that I had that day, the day that we got the phone call. Told over the phone. Told in a way that I should have expected it, after all, I was 36 years old. I was no longer young. All the feelings that I felt that day, the feeling of having a perfect child, all down the drain. The feeling that my child would be adorable, all down the drain. The feeling that my child would go to university, all down the drain. The feeling that I had done something wrong. The feeling that we should have started trying right away after we got married. The feeling that I would have to take care of this little being for the rest of my life. The feeling that Brinley and her sister wouldn't like each other, there would be no bond, they would have nothing in common. The feeling that my child would have an aide, would start crawling later, start walking later, start talking later, be potty trained later. I felt that all of my dreams for a healthy, perfect child, just went down the drain.
It was a day that I will never forget and as my friend told me how her friend was told, it made me ill. She needed some facts, she needed some reassurance, she needed support. She is now left with a broken heart. She is left with not knowing what to do, what to say, how to react. Nothing. Just a cold doctor who told her that she could have an abortion.

On the day that we found out that we had a 1:2 chance that our baby would have Down syndrome, it was my doctor that made us smile. It was my doctor that gave us the facts. It was my doctor who set us up with the best genetics' counsellor. It was my doctor who hugged us and told us that we will be ok. It was my doctor who cried with us and let us cry with her and let us tell her that we couldn't possibly do any of this, because this wasn't the path that we were ready for....it wasn't the path that we had planned. It wasn't the path that we expected. We were on a path now with so many hurdles and bumps in the road and the unknown. It was a path that we never asked for. We didn't ask for this. Why would we be punished? Yes, that thought went through my mind. I never shared that with anybody, not even James. I wondered why we would be the ones to be punished? What did I do to deserve a baby that wasn't perfect? You have so many thoughts and emotions running through your head, you don't know which way is up. You slump into a bit of a depression and you cry so much that you can't cry anymore, then you figure out which path as a family, you will take. Will you take the path that 90% of women choose. Do you terminate? Do you keep going and love every minute of the path and learn from the bumps and hurdles?

It's tough. I remember hearing from so many women that if they ever found our during pregnancy that they were expecting a little one with Down syndrome, they would continue with the pregnancy, there is no way that they would terminate. Do I believe all of those comments? Not for a second. You will never know how it feels to be told that your trip to Italy, will turn into a trip to Holland. You don't know unless who have been placed in that position. I know that in your heart, you would love your child no matter what and that you could handle it, but when you are experiencing it first hand, it is very different. It is so difficult. You feel selfish. You think about yourself. You think about how difficult it could be on you. Then you think about your unborn baby. What if our baby has a heart defect? What if our baby can't suck and swallow properly? What if baby has GI concerns? What if our baby doesn't have a mild form of Down syndrome, but instead is on the moderate end of the spectrum? Is this fair?

That phone call today took me back. I could actually feel in the pit of my stomach, the feelings that they are experiencing today. The feeling of despair. The feeling of hopelessness especially when your doctor isn't supportive. Right now, she is sitting at home and her mind is racing. Her heart is pounding and she has so many questions. So many questions that her doctor should have answered today. They are so frustrated.

Where James and I are today is world's away from the day we found out. We are in a place of contentment. We are in a place of beauty. What I realized is that the trip to Italy would have been boring. Italy has a bunch of dirty streets and garbage on the roads and the scenery isn't always perfect and serene. We realized that the trip to Holland is beautiful. It is filled with joy and pretty scenery and beautiful people. It is going to be so much more interesting, filled with love and hand holding and laughs!

If you want to read the whole poem, it is just beautiful. I posted it a while ago. It is written by Emily Perl Kingsley.

The path that we chose is the path that was meant for us. It was the best decision. It's difficult when you are pregnant, the unknown. It's hard. When you hold your baby, your perfect baby, all you feel is love. You see perfection. You see this loving beautiful soul. You see this amazing being that you created. You don't see the journey ahead. You see a miracle. You don't see Down syndrome. You see your child. You don't see two sisters who will never connect. You see two sisters who from the moment they saw each other, there was true love.
Life is a journey whether you have a child with special needs or not...life is full of ups and downs. Life is going to throw us curveballs with both girls. Adele's life has been amazing and will only continue to get better. She will walk and talk and learn to go on the potty. She will go to school and play with friends and laugh and cry and fall in love. She IS adorable and has already melted many hearts. She has brought so many people into our lives, people who are the most amazing and loving human beings. James and I have been blessed. We feel honoured that we were chosen to be Adele's parents. I wouldn't change anything. Life is going to be beautiful.

A little contest....I want to get to 100 000 views by April. I am at 75 000 right now. I am up a thousand from yesterday. If you share my blog, tag me in the post and you will be entered in a draw for a great prize!! A really great prize. If you are sharing again today, you will have another chance to win! I will mail it to anywhere in the world. My goal...get the word out. Bring reassurance to families. Bring comfort and joy to those who are struggling. Lots of shares so far! If we are not friends on Facebook, send me an email after you have shared, at krowland23@hotmail.com or comment below. <3

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