Getting The Word OUT!!!

Love this picture....even though James is wearing his tighties and a pea bag!

Well, October is almost over...another month down. I know that it's so cliché to say, but time flies. I don't know where the months go. I look at Brinley and see this big girl now, all grown up! I know that people say to hold onto this time, but I'm happy with it moving on. I am enjoying all of the moments with her and Adele. It's awesome with two girls. Busy, but awesome. October has been super busy and I loved it.

All ready for Halloween!!

We are all ready for Halloween. Brinley still doesn't really get it, but we will dress her up and take her to a few homes. I hope that Trick or Treating in High River puts a lot of smiles on the faces of all the kids and parents. It continues to be tough for so many. 
I saw the special on High River last night with Mike Holmes. It brings back a lot of memories, but what it makes me realize is that I don't know so many of the stories. I don't know what others went through, the details. I just know that the whole town experienced devastation and that lives were lost. Animals were lost. Belongings were lost. I don't feel I need to know all of the stories, but part of me wants to know what others have been through and how they are feeling today. I want to hug the families who lost their homes, belongings, loved ones and animals.
I hear so often that it's important to hold onto all the memories, what you lost is just stuff. I mentioned before that it wasn't just stuff, it's what we purchased, it's what we valued, it's stuff that we held dear.
Anyways, my wish for tomorrow is happiness and joy for the families in High River.

Almost back to tummy! :)

My next, kind of random thought.....I was thinking the other night about the blog. I know that people read it and seem to enjoy it but I feel that it isn't quite enough. I'm not about the numbers, but I am about the numbers. I know that some write blogs purely for entertainment, but I truly write to get the word out about Down syndrome, ok, and some entertainment.  I don't always write about Down syndrome, but I write about life, our life. This would all be worthwhile, if somebody told me that because of the blog, they decided to proceed with the pregnancy, knowing that they are carrying a baby with Trisomy 21. All I need is for one person to tell me that the blog made them feel that they could do it, they could raise a special needs child.  I know how it feels to be told that there is a 1 in 2 chance that your baby would have Down syndrome. I remember thinking that it was going to be too difficult. I just want somebody to feel reassurance. I want somebody to feel comfort. I want somebody to feel joy. I want somebody to feel relief and optimism.

HI DAD!!

Every day, I try to think of more ways to get the word out there...every day, I try to figure out how to reach millions, not just thousands. I know some may think that's silly, but it's my mission. Educate. Share. Laugh. Cry. It can be done. I promise.
Some of you share the blog on your Facebook and I truly appreciate it, a lot. I have some friends who share the blog every day and haven't missed one since I started writing. Please share and re-post and get your friends to share and re-post. I want it everywhere, well, not that site that when I click on it, it's naked girls. Not exactly too sure how that happened. It's gross.

Next....lately, I've been told many times that I will probably have it easy with Adele because children with Down syndrome are always happy. They are always smiling and she will always be a joy to be around. I think people need to realize that Adele is still a typical, normal child. What is normal?? I don't know if that word should really be used with humans. Who is actually normal? Anyways, Adele will get mad at me, she will yell at me, she will refuse to do her homework, she will cry, she will spaz out, she will fight with her sister, she will refuse to eat her veggies. The only thing that she will not do, is twerk! We all know what James and I will do if this happens......

Tomorrow is my last day of the 31 for 21 Challenge. I have been writing now for 30 days straight. I hope that you have gained some knowledge on Down syndrome. I am hoping that over the past month, you have laughed, cried and enjoyed our life. It's crazy and silly and sometimes really difficult, but it's our life and I love it.

Who knew I was a teacher?? I want to be a Pinterest mom! I want to be talented. I want to be all artsy crafty!! My poor art project looks like somebody did it with their eyes covered and their hands tied behind their back. :)

I'm slipping......but coming back :)

**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 19 (BOO), 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! :)



Twerk or Treat!!

Brinley decided that when she saw this beautiful creation, she would like her daddy to make her a Miley pumpkin for Halloween! We are so proud of her! ;)
Daddy and mommy have decided that we will dress up as one of those creepy bears with our tongues hanging out and we will take her Twerk or Treating....TO EVERY HOUSE!!!
We WILL twerk for candy! :)

Thank God Adele only wants to be Minnie Mouse. She was using good judgement. :)


I'm slipping......but coming back :)

**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 17 (BOO), 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! :)

A Little Education :)

People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child," it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's."

Down syndrome is a condition or a syndrome, not a disease.

People "have" Down syndrome, they do not "suffer from" it and are not "afflicted by" it.

Down vs. Down's - NDSS uses the preferred spelling, Down syndrome, rather than Down's syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage is Down syndrome. This is because an "apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using "Down syndrome," as well.

While it is still clinically acceptable to say "mental retardation," you should use the more socially acceptable "intellectual disability" or "cognitive disability." NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

MYTH: Down syndrome is a rare disorder.

TRUTH: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies is born with Down syndrome, or approximately 6,000 births per year.

MYTH: People with Down syndrome have a short life span. 

TRUTH: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

MYTH: Down syndrome is hereditary and runs in families.  

TRUTH: Down syndrome is hereditary in approximately 1% of all instances.  In the other 99% of cases Down syndrome is completely random and the only known factor that increases the risk is the age of the mother (over 35).  Translocation is the only type of Down syndrome known to have hereditary link.  Translocation accounts for 3 to 4% of all cases of Down syndrome.  Of those, one third (or 1% of all cases of Down syndrome) are hereditary.

MYTH: Most children with Down syndrome are born to older parents.

TRUTH: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

MYTH: People with Down syndrome have severe cognitive delays.

TRUTH: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

MYTH: Most people with Down syndrome are institutionalized.

TRUTH: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

MYTH: Parents will not find community support in bringing up their child with Down syndrome.

TRUTH: In almost every community there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. 

MYTH: Children with Down syndrome must be placed in segregated special education programs.

TRUTH: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

MYTH: Adults with Down syndrome are unemployable.

TRUTH: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.

MYTH: People with Down syndrome are always happy.

TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

MYTH: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

TRUTH: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.

MYTH: Down syndrome can never be cured.

TRUTH: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

National Down Syndrome Society

I'm slipping......

**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 22 (BOO), 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! :)

Intervention!

In need of an intervention....

 

 

Box #1

 

 

 

 

Box #2

 

 

 

 

 Box #3

 

 

 

 

 Box #4

 

 

 

What is left of Box #4

 

 

 

Why do we buy Halloween candy so far in advance, knowing that we WILL open a box and eat it all??

I am ashamed! I am thinking that I am no longer down 30 pounds. I am using Smarties as a reward system for Brinley. I need help. Send help. 



Ice Packs and Sundre...

Today is the day after the vasectomy! James' nuts made it through the night. I was worried about him and whether or not they would possibly fall off and he would perhaps wake up a few ounces lighter. :)
He's feeling fine.
He told me today that he asked the doctor yesterday how many vasectomies he had performed that day. James was the last one, number nine.
James asked if it's better to be number one or the last snip snip of the day?? The doctor told James that it didn't really matter cause he doesn't really even think about it. It's a no brainer and it relaxes him....   ?????? Preforming the task of freeze, cut, snip, snip, stitch, bandage, doesn't require thinking. I don't really know what to say.
I'm thinking though that I wouldn't want to be the last snip of the day...you're tired, you've looked at a minimum of eight penises.......

These are awesome!

He also was perhaps in a bit of a rush because the doctor actually slit James before the freezing had kicked in. Needle in scrotum, three seconds later, CUT! I guess that was just a moment in time, maybe three or four breaths, compared to the twenty hours of pain that I experienced while labouring his children. I felt bad for approximately five seconds when he told me, then I moved on. :)
After we returned home from our family trip today, James forgot that he had undone his shorts to put some ice on the affected areas :) When he got out of the car at the house, his shorts went right down to his ankles....the neighbours, I'm pretty sure saw the three layers of tighties that he was wearing and the nine inches of gauze protruding from his frontal region. He looked at me and said "put that in your blog!"

Today, we went out to Sundre to visit a dear family friend. Mom and dad have known D for fifty years. That's a long time. D and his beautiful wife, welcomed us into their gorgeous home for lunch and for a visit. Many, many years ago, dad and D got themselves into a lot of trouble; fights, girls, parties, and lots of amazing times. Over the years, mom and dad have lost touch then gotten back in touch with them and it always has felt like no time has passed by.....
I recently saw a picture of D on Facebook and I called mom. I was well aware that he has Hepatitis and has been in and out of the hospital, but I know that D is a fighter and a strong man. He can overcome it! I told mom that D looked a bit unwell and that I thought it was time for a family visit. I know that D reads the blog every day, hopefully he realizes that I write out of love and respect for him and his family.

When we arrived, lots of hugs took place and the excitement of seeing somebody after so many years having passed by, felt like yesterday. D looked happy. His wife looked beautiful but you could see the concern and the love she has for her husband. Those two are soul mates. I know that some people feel that soul mates don't exist, that people just settle for somebody, that there is always somebody else out there, possibly better, possibly not....D and D are soul mates. They love each other and respect each other. It makes me smile.
Dad and D were deep in conversation as soon as we arrived. They didn't stop talking the whole time we were there, there was just so much to say. So much to get out. So much to cover just in case there weren't anymore visits.
I chatted with D's wife a little bit about his health and she hurts and is already grieving a loss that hasn't yet happened. She loves her husband dearly.
When I had a conversation with D over Facebook, he told me that he has come to terms with it, with his health, with knowing that his time is limited. He accepts that he has Hepatitis. He accepts that it was never his fault how it was contracted. D is an optimist. D is somebody who brings out the best in others. D is caring and loving and compassionate and a wonderful man. Our family has been so fortunate to have D in our lives. We feel blessed that we have so many memories and have had the opportunity to share many special moments with D and his family.

When you are told that you have a limited time, what do you do with the time that you are given? Do you live life how you always have lived it? Do you travel? Do you become a hermit? Do you cry? Do you isolate yourself from the world? Do you call your friends? Do you set up dates with the people you love the most? What would you do? I have mentioned in other posts that we take so many things for granted. We take others for granted. We take waking up in the morning for granted. Life is about doing the things that make you happy. It's about surrounding yourself with people who love and respect you. It's about telling others that you care about them. It's about loving your children so much that it sometimes hurts. It's about being the best person that you can be even when you don't feel like it.

**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 20 (BOO), 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! :)

RIP Dear Friends.....

SMILES

Well, today, we said goodbye to some very dear friends. These friends have been by my side for the past five years. They have always been reliable any time of day, sometimes they were even called on in the afternoon, always there.
They supported us through the hard times and the easy, crazy times. They loved us. They played a major role in James' life for many years, longer than the five years that they were always by my side. They were faithful to James and loving and caring.
When I think of our dear friends, this poem came to mind. I believe they were a part of our lives for a reason. They have taught us so much.

When someone is in your life for a REASON,
it is usually to meet a need you have expressed.
They have come to assist you through a difficulty;
to provide you with guidance and support;
to aid you physically, emotionally or spiritually.
They may seem like a godsend, and they are.
They are there for the reason you need them to be.


Then, without any wrongdoing on your part or at an inconvenient time,
this person will say or do something to bring the relationship to an end.
Sometimes they die. Sometimes they walk away.
Sometimes they act up and force you to take a stand.
What we must realize is that our need has been met, our desire fulfilled; their work is done.
The prayer you sent up has been answered and now it is time to move on.


Some people come into your life for a SEASON,
because your turn has come to share, grow or learn.
They bring you an experience of peace or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount of joy.
Believe it. It is real. But only for a season.


LIFETIME relationships teach you lifetime lessons;
things you must build upon in order to have a solid emotional foundation.
Your job is to accept the lesson, love the person,
and put what you have learned to use in all other relationships and areas of your life.
It is said that love is blind but friendship is clairvoyant.

— A poem by Brian Andrew "Drew" Chalker

Yes, today we said goodbye to the live swimmers. James had his vasectomy! Goodbye friends! Goodbye.

All stretched out!

When we walked into the office, there was a man walking down the hall and I heard him say "Well, good for another year."
Good for another year??? I thought vasectomies were for a lifetime. I'm so confused. Why does this man sound so old and he just had a vasectomy? Maybe he's a playboy? A gigolo? A man whore perhaps?
Then the door to the office opened and a lady walked up to the desk and said that she was there for her flu shot! Ok, I get it. They perform vasectomies and flu shots! What an office.

Fell on my face! Somebody buy me a helmet with a full face mask!

James was called to the back, he kissed me, I told him that I loved him...the receptionist reassured me that he would be coming back. Maybe I said 'I love you' like he was undergoing major surgery or that there was a chance that he would never return to us.

Around five minutes later, the doctor came out.
AHHHHHH...there must be something wrong!!! That was five minutes. I gave birth to two girls without epidurals and the pain lasted for over twenty hours, not to mention the hell after delivery. :) There is no way that a vasectomy is only five minutes. For sure his heart stopped or he bled out or the nurse wants to date him and he said yes and he is refusing to go through with the procedure.
Nope, all was good. I asked the doctor if James cried. He said that he whimpered like a little girl. I smiled.

James' girlfriends tonight! :)

I went back to see James and I could tell that there was so much gauze down his tighties. :)  I told him that he looked  HUGE. The doctor said that because Christmas was just around the corner, he added two inches. What a nice present, just for me. :)
There was a lot of laughing and joking and bad humour, then we headed home. James said that it felt like somebody had flicked him in the nuts. Now, the freezing was still going strong, so we came to the conclusion that by the time the freezing comes out, it will feel like he's been kicked in the nuts by a horse. It should be a good night. :)

Happy 3 months!! :))

Anyways, let's go back to when we were in the doctor's office. The older gentleman, who I thought had the vasectomy but instead only got the flu shot, ruining my hopes that he was a gigolo...we had a good chat.
He asked me if this decision to have the vasectomy was a very long and thorough conversation or was it a rather easy one?
 I told him that it was a fairly quick conversation.
"James, no more kids."
"Ok."
I told him that if we wanted another child, we would adopt. I told him that I was too old to have anymore. He thought I looked young. :)
I discussed with him, a little bit about our journey with Adele. He said that he thought maybe she had Down syndrome because of the shape of her eyes. He was kind.
He had a way with his words, it was never offensive or cruel. He was very matter of fact and articulate with what he had to say about Adele.
Before he left, he wished me luck and he was sincere.
While in the office, a few women came up to Adele and told me that she was the most beautiful baby. One of the women came up a few times just to see her and pay her a compliment. It was just one more beautiful moment in the life of Adele.

DAD!!! STOP TALKING AND MAKING FACES AT ME!

When Brinley was a baby, people complimented her and were kind and thoughtful, but Adele is different. She attracts so many people and gets so much attention. She draws people in and gives off a beautiful vibe. I don't know exactly what it is, but it always makes me smile.

Off to grab another pack of peas. Cheers to the vasectomy!

**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 20 (BOO), 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! :)

Our Miracle

On Tuesday, we went to The Children's Hospital for Adele's respiratory appointment. I was feeling a bit optimistic. Maybe she would only need oxygen at night? Well, the testing only lasted for a short time because when I turned the oxygen off, she dipped. We will keep pluggin away. As I have said before, we can't stand the oxygen, but we love it. We also met with the RN, OT, RT, MD, RDN :) It was a full day.
I have to be honest, I don't really enjoy going to The Children's Hospital. It makes me sad. I always see sick kids, very sick kids and it breaks my heart. It bothers me that there is an oncology unit. It just isn't fair.
Each time I've been to the hospital, there has been a code blue. I'm worried that I am bringing bad vibes with me...code blue in mental health and code blue in diagnostic imaging. I prefer no codes, just happy, healthy children.
When we arrived at the hospital, a lady joined me in the elevator. I believe she was Spanish, not that it really matters. She came right up to Adele, looked at her and said that she was the most adorable and beautiful baby. I thanked her. She then told me that this little girl was going to make a huge difference in my life. It's crazy when you need a little pick me up, and there she was....picking me up and making me smile. I was so appreciative.

The nurses and doctors all said that Adele was just beautiful. It really warms my heart.
The unit clerk kept calling Adele 'he' and I kept saying 'she', then she would say 'he' and I would say 'she'...I guess the pink blanket and pink sleeper didn't give it away. Finally she says 'oh, it's a baby girl'. Good lord!

Last night as I was laying in bed, now you will all find this very bizarre, but something hit me. We have a baby with Down syndrome. Honestly, in my head, I was thinking, holy, we have a little baby girl with Down syndrome. I know that I haven't been in denial. I know that I have accepted it. I know that we love Adele deeply. It  was like an epiphany yet something that I was already fully aware of...I don't know why this popped into my head. I had a moment of panic, then a moment of breathing, then a moment of panic and then a moment of calm. It's really difficult to explain.

Something else that has happened lately is that when people pay Adele a compliment, I tell them that she has Down syndrome. I don't do it for a reaction. I don't do it so people will think I am a martyr. I don't do it so others feel sorry for me. I realized that I say it with pride. I say it with a smile on my face. In one of my previous posts, I was stuck as to whether or not I should tell others that Adele has Down syndrome. I didn't know what others really needed to know, I felt that all they needed to know was that her name is Adele and she is our child. That is still how I feel yet, this other small epiphany made me smile. No, I don't need to share any information with others, but I am proud of Adele. I am proud of how far she has come. I am proud that she continues to grow and develop. I am proud that she is hitting milestones in a timely manner...for now. I am a proud momma.
I love taking Adele out and showing her off to others. I love it when people come up and check her out. I love that the majority of the people I have come in contact with, love Adele instantly. It's just such a good feeling!

My love seems to grow as Adele grows. As her personality develops, I feel more love. When she smiles at her momma, my love grows. She knows her momma and I love that when she hears my voice, she looks right at me. There is something so great and wonderful about this little girl....I know that is a mommy comment, but it's more than that, it's this little miracle baby who I get to love and be with every day. It's this little girl who came into our lives for a reason. As I was driving home from the hospital, I thought back to the day when we found out about Adele's diagnosis. We were shattered. The tears and the feeling of hopelessness was overwhelming. I cried even before we got the results, maybe because I knew that she would have Down syndrome. Why did I cry? Why would you be sad to find out that your child will have Down syndrome? Is that kind of selfish? Is it because I was told that our child wouldn't be perfect? Is it because in my head, I knew that she would be at the bottom of her class? Is it because I knew that she would need our help for the rest of her life? When I think of those reasons, I hear selfishness. I remember the day, James and I said to each other that it was impossible. We couldn't possibly raise a special needs child. That would be way too much work. Our dream of the perfect child was shattered. Again, I hear selfishness. How do we know that Brinley won't be at the bottom of her class? How do we know that Brinley will lead a successful life? How do we know that Adele won't excel at so many things? How do we know that Adele won't just shock the shit out of all of us? Why do we have a preconceived notion of what Down syndrome is all about? I remember when the hospital called and said that I was being induced at 17 weeks to terminate the pregnancy. I asked the OB to book an appointment for me, just in case. Just so I could say 'yes' or 'no.'
We made Adele. We made a perfect, little girl. We made a miracle.

**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 20 (BOO), 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! :)