30 September 2014

I Wish My Child Didn't Have Down Syndrome.....

Lately, our lives have been filled with a lot of greatness. We had our interview with Global News and it went really well. The donations and messages have been coming in and the words of support have been overwhelmingly heart warming. It aired four times and each time, I got more likes on Adele's page and more support from people all over the world. I am so happy that we chose to do the segment, although, it's not me. I didn't do this for me, I did this for the girls. I did this for all of Adele's friends. It warms my heart to see all of the love come pouring in for our amazing little miracle. We have a few more media opportunities that are coming up in the near future. We are grateful.


The other night, as I was laying in bed, I was thinking about our life with Adele. I do this often, think about the future, think about things that I would change, things that I would do differently and how I honestly feel about Down syndrome.
It's difficult to explain exactly how I feel. There are so many aspects of Down syndrome that warms my heart, but there are so many other things that I detest. I've been reading a lot lately, different posts from moms saying that they would never change their child, they would never change the fact that their child has Down syndrome. I've thought a lot about this and I think I've even said that I wouldn't change Adele. I think I say this to others because I should say it, I should tell others that she is perfect just as she is, she can do anything, she can do everything that 'typical' children can do. The truth is, I'm not too sure if I actually feel this way, if I believe my own words.
Would I change Adele? No, I wouldn't change that we have her in our lives. I wouldn't change her eyes, her smile, her giggle, her little legs and perfectly round face. I wouldn't change Adele, but I would change that she has Down syndrome. Yup, I said it, I would get rid of the extra chromosome. 
I don't know if this sounds harsh. I don't know if it's the wrong thing to say. I just don't know if I believe parents when they say that their child is perfect with Down syndrome. I read posts from parents sharing their fears as their child heads back to the operating room for the fifth, tenth, thirtieth time. I see feeding tubes. I see cannulas. I see scars. I see stress and upset and fear.
How, as a parent, would you not want all of this to go away? Maybe you do want it all to go away, but you would not ever consider wanting a child without Down syndrome. I don't know.

There is a list of things that I don't like about Down syndrome:


Medical Problems Associated With DS

While some kids with DS have no significant health problems, others may experience a host of medical issues that require extra care. For example, almost half of all children born with Ds will have a congenital heart defect.

Kids with Down syndrome are also at an increased risk of developing pulmonary hypertension, a serious condition that can lead to irreversible damage to the lungs. All infants with Down syndrome should be evaluated by a pediatric cardiologist.

Approximately half of all kids with Ds also have problems with hearing and vision. Hearing loss can be related to fluid buildup in the inner ear or to structural problems of the ear itself. Vision problems commonly include strabismus (cross-eyed), near- or farsightedness, and an increased risk of cataracts.

Regular evaluations by an otolaryngologist (ear, nose, and throat doctor), audiologist, and an ophthalmologist are necessary to detect and correct any problems before they affect language and learning skills.

Other medical conditions that may occur more frequently in kids with Ds include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection, and a higher risk of childhood leukemia. Upper neck abnormalities are sometimes found and should be evaluated by a doctor (these can be detected by cervical spine X-rays). Fortunately, many of these conditions are treatable.

Low muscle tone (called hypotonia) is also characteristic of children with Ds, and babies in particular may seem especially "floppy." Though this can and often does improve over time, most children with DS typically reach developmental milestones — like sitting up, crawling, and walking — later than other kids.

At birth, kids with Ds are usually of average size, but they tend to grow at a slower rate and remain smaller than their peers. For infants, low muscle tone may contribute to sucking and feeding problems, as well as constipation and other digestive issues. Toddlers and older kids may have delays in speech and self-care skills like feeding, dressing, and toilet teaching.

I have this fear every day that something may go wrong, that her health may take a turn for the worse, that all of a sudden, I'm told that she has cancer. People who don't know a lot about Down syndrome, they see the physical features associated with Ds, but they don't realize that there are so many other medical concerns that come along with the diagnosis. They see happy and joyful Adele. They have a preconceived notion that people with Down syndrome are always content and easy going. They don't think about how Adele will need extra support and attention for the entirety of her life.
I get that we all worry about our children, that's what we do as parents. There are a lot of blog posts floating around about being a parent to a child with special needs. They talk about sleepless nights, appointments, surgeries, illnesses, stress, the loss of a normal life. I have read a few of them and I get it, but they all seem to end with, I would never change all of this for the world. I don't get it.

I don't regret for an instant that we brought Adele into this world. She is a perfect little miracle. I would rather a child without Down syndrome. It's not the journey that we asked for but are learning how to cope and deal with the appointments and the delays. It's difficult when your 14 month old is not sitting up unassisted, she's not crawling, she is just getting her first tooth, she is behind. People will say that she will get there. I am totally aware that she will get there. I get that she is going to crawl and walk and talk. It makes me mad some days that she has these mountains to climb. That's what they are, mountains. Our children have to work so hard. It makes me sad. I cry when she hits milestones. It's so emotional because I have watched this little being work and work and work just to achieve a small goal. I wish it was easier.
I need to think about the future because Adele will always need support. We will need to have a plan in place for when she is older. You have to do this when you have a child with Down syndrome.

There is no embarrassment that my child has Down syndrome. I don't feel ashamed. I just want her to be able to take the easy road, not the one that is filled with windy curves and bumps. Life should be easy. It sucks when you bring a child into the world and you know that it's going to be difficult. It's going to be difficult for all of us.
All of the projects that I have started are for the girls. I love making the baskets. I love taking them to the hospitals. I am doing this because it is important to me. I want to change the world. I want to educate and let others know that it can be done, but it is work. It is tough. It has its moments. There will be times when you sit down and cry because you feel sorry for your child, you feel sorry for yourself. I have been told many times that we were given Adele for a reason. I do believe that both of our children were given to us for a reason. They have made me a better person. They make me want to do good for others. Some days, I feel that maybe I am working too hard at making sure that Adele has a good future. Does that make sense?
I've read the poem 'Welcome to Holland' may times. I loved it when I initially read it and then I realized that I want Adele to see Italy and all of the architecture and beauty and to be a part of the fast pace. I know that Holland is beautiful, there is no doubt, but I wanted her to choose where she wanted to go. I didn't want her future to be decided for her, that's not fair.

To wrap this up. I love Adele and Brinley with all of my heart. I could not imagine my life without either of them. I love my days. I love taking the girls out. I love showing them both off to new friends and sharing their pictures with the world. I will continue to work with both girls so that they are able to achieve their dreams and goals and their father and I will always be their strongest advocates. I love both girls equally. I am still new to this journey. I don't know what the future holds. Maybe I feel sorry for myself, that I have to raise a child with Down syndrome. Maybe I am the one who doesn't want to work harder than other parents. Maybe as Adele gets older, my brain will relax. I will take life day by day. I will let Adele just be Adele and accept that we were chosen to be on this journey.

I just want the journey to be beautiful for Adele.


21 September 2014

4 things that a mom needs to hear

4 things that a mom needs to hear

Thank you. I think back to the days when my sister and I were younger. My mom worked full-time, took care of the house, did all of the chores, got us to school, made lunches every night for the whole family, walked the dog, tucked us in at night, bought us clothes, had dinner on the table by 5:00pm every day, did all of the laundry. The list goes on. What did my mom want to hear? All she needs to hear is "THANK YOU MOM."

I appreciate you. Moms work tirelessly and without complaining. They carpool, they take the kids to soccer, hockey, dance, ballet, lacrosse. Moms go to all of your practices, they cheer you on even when you are the weakest player on the team. They tell you just how proud they are of you when you walk off the field. They hug you when you lose the game. They put band-aids on your cuts and scrapes. They hold your hand and tell you that you will be ok. They cry with you when things aren't going well at school. They stand up for you. They comfort you when you need a shoulder to cry on. They are your biggest fan. All she needs to hear is "I APPRECIATE YOU MOM."

You're pretty. You've worn the same pair of Lulus for the past three days and your thighs are rubbing and you have pilling in between your legs. Your hair is pulled back in a ponytail and you haven't put any makeup on your face in months. You haven't shaved your legs in weeks, possibly months, except for the one day that you had nothing else to wear except for the capris pants that are rolled up into a ball at the back of your closet, so that day, you shaved up to the pant line, four inches up from your ankle. You haven't plucked your eyebrows in a year and by now, you have just given up. Bushy is in?!?! You have gained 15 pounds since the kids returned to school, because you keep hitting the drive-thru on your way to run errands for your kids. All she needs to hear is "YOU'RE PRETTY MOM."

You're an amazing cook. You have made the same meal twice in a week, forgot some ingredients in one of your dishes, failed at attempting a new meal, forget the veggies twice in a row, got KFC on your way home because you need to have everybody fed and watered before soccer practice at 6:00pm, a baseball game at 7:00pm and ballet for the youngest at 6:30pm. Wait!! How do you manage to be at three different extracurricular activities all around the same time? You gave your children Lunchables three days in a row and you aren't even feeling guilty. You promise to make up for it at dinner time....a nice roasted chicken with veggies and potatoes....but wait, that will have to be next week, because your husband has a work function and you need to find a babysitter. I guess it's pizza night. All she needs to hear is "YOU'RE AN AMAZING COOK."

4 things a wife needs to hear

You're beautiful. See You're pretty with the added.....although you have decided that womanscaping is no longer needed because you have been married for so many years and you are sure that your husband couldn't care a less what it looks like. You have neglected some personal grooming and you feel awful about it and it makes you feel less sexy, but you only have 5 minutes allotted for shower time in the morning, because your children will destroy the house and harm each other. All she needs to hear is "YOU'RE BEAUTIFUL."

I love you. Although there are days when things suck and she infuriates you, her every move, her nagging and complaining, her unshaved legs, her lack of creativity in the kitchen, her monthly rollercoaster ride, she managed to play, care for, feed, love and take care of your children. She had your home cleaned and organized for when you walked in the door and she promised to make up for it later that night, although, you know that she will be fast asleep by the time you shower and crawl into bed next to her. All she needs to hear is "I LOVE YOU."

Thank you for being an awesome mom. Although there are days when you feel like you have completely failed as a mom and the thought of driving off of a bridge is tempting, you still came out on top. Your children got fed and watered, they learned a new colour and shape, they took naps, they got snuggles from you, they smiled, they laughed. When your husband walks in the door from work, you hand the kids over and take a deep breath. You think about how tomorrow can be better and how you need to find new ways to deal with your lack of patience. All she needs to hear is "THANK YOU FOR BEING AN AWESOME MOM."

I want you for the rest of my life. A house, kids, activities, lack of patience, lack of romance and kissing, frustration, lack of excitement, too busy, too much to get done, forget about each other's needs, anger, exhaustion, money is tight, bills, boredom. There is a long list of negatives when you are married. There are days when you want to walk out the door because it must be better somewhere else. There are days when you feel so overwhelmed by life that you wonder what you were ever thinking, how could married life work? This is so much work and I don't know if I have it in me to keep going. You then have a moment, where you stop and look around at all that you have, your children, your husband, the man who chose you as his wife. He walks in the door and hugs you and reassures you that you can do this together. He tells you "I WANT YOU FOR THE REST OF MY LIFE."

** The past few days have been difficult for the family and for a dear friend. My mom's best friend was diagnosed with cancer in March and was given 4-6 weeks to live. She fought hard and continued to be an amazing wife, mother and friend. She always had a smile on her face, a joke, a silly story to share. She was a remarkable woman.
I was fortunate enough to have spent several hours with her and her husband on Friday at the hospice. I sat beside her bed for seven hours, rubbed her hand, rubbed her arm, rubbed her face and her head. I told her stories, I showed her pictures of the girls. I told her how much I loved her and how I need for her to watch over Brinley and Adele.
I watched the man who had been married to his loving wife for 44 years. I watched how he caressed her hand, her cheek. I listened to his loving words, trying to get in every thought and emotion before it was her time, knowing that she had only a few hours left. He told her that he was her hubby and she was his wifey. He told her how much he loved her and how he would always love her, until forever. He kissed her lips. He kissed her hand. He kissed her cheek. He had to say goodbye to the woman who he had promised to spend the rest of his life with, forever and ever. He said good bye to his best friend, his partner, his love.

Remember to love with all of your heart.


11 September 2014

Your Child is a BULLY and it's YOUR Fault....

Well, it's that time of year, back to school.

New clothes - check
New hairdo - check
New school supplies - check
New backpack - check

Parents are ready for summer holidays to be over and for routine and schedules to start up again. The summers are long for some parents and the thought of school, it's the happiest time of the year. The children are excited to be reunited with old friends, meet new friends and find out if they got their favourite teacher. This is pretty much the same across the board from kindergarten to grade 12. We all get excited, although it is short lived with the older kids. :) As a teacher, I used to get excited to start the new year, meet all of my new students and get the year going.

Most of our schools here in Canada, on the traditional calendar, started school last week. It hasn't been long but the bullying has started. Let's be clear and define bullying.


Bullying is unwanted, aggressive behavior among school aged children that involves a real or perceived power imbalance. The behavior is repeated, or has the potential to be repeated, over time. Both kids who are bullied and who bully others may have serious, lasting problems.
In order to be considered bullying, the behavior must be aggressive and include:
  • An Imbalance of Power: Kids who bully use their power—such as physical strength, access to embarrassing information, or popularity—to control or harm others. Power imbalances can change over time and in different situations, even if they involve the same people.
  • Repetition: Bullying behaviors happen more than once or have the potential to happen more than once.
Bullying includes actions such as making threats, spreading rumors, attacking someone physically or verbally, and excluding someone from a group on purpose.

Types of Bullying 

There are three types of bullying:
  • Verbal bullying is saying or writing mean things. Verbal bullying includes:
    • Teasing
    • Name-calling
    • Inappropriate sexual comments
    • Taunting
    • Threatening to cause harm
  • Social bullying, sometimes referred to as relational bullying, involves hurting someone’s reputation or relationships. Social bullying includes:
    • Leaving someone out on purpose
    • Telling other children not to be friends with someone
    • Spreading rumors about someone
    • Embarrassing someone in public
  • Physical bullying involves hurting a person’s body or possessions. Physical bullying includes:
    • Hitting/kicking/pinching
    • Spitting
    • Tripping/pushing
    • Taking or breaking someone’s things
    • Making mean or rude hand gestures

What are the effects of bullying?
Bullying makes people upset. It can make children feel lonely, unhappy and frightened. It can make them feel unsafe and think there must be something wrong with them. Children can lose confidence and may not want to go to school anymore. It may even make them sick.

Some people think bullying is just part of growing up and a way for young people to learn to stick up for themselves. But bullying can have long-term physical and psychological consequences. Some of these include:

Withdrawal from family and school activities, wanting to be left alone.

Stomach aches
Panic Attacks
Not being able to sleep
Sleeping too much
Being exhausted

I think back to my elementary, junior high and high school years. I clearly remember being bullied. I remember it like it was yesterday. I remember sitting in Language Arts class and the boy sitting in front of me called me FAT, he did this many times. He has never apologized. I was in grade 9. I was 14 years old. This was 23 years ago. I remember the 'cool' girls in high school. I remember them being too cool to be kind to others. I remember all of the incidents. It doesn't go away. It never goes away. It was years of bullying, disrespect and tears.

I can hear some people saying, "Oh, just get over it."
"You know it's not true."
"It's time to get on with life."
"Don't dwell on it."
The pain never goes away.

For those who bullied, do you just get over it? Do you think back to the days when you harassed, name called, made others feel worthless? I hope that you do. I hope that you make right with others who you hurt. They aren't over it. It doesn't just go away. I remember the times that I bullied others. I did it too. I was tall, I was loud, I wasn't shy. I remember times in elementary and junior high school when I bullied others. I do remember and it hurts me to this day, that I behaved that way. If I could go back and fix it, I would in a second. This is what children need to understand, be a good person today, be kind to others today. Your words and actions will remain with others forever. A lifetime.

The saying 'sticks and stones can break your bones, but names with never hurt me.' I'm not too sure who came up with the most ridiculous saying. It is the most untrue statement that I have ever heard. Words hurt. Words hurt a lot and for a lifetime.

When I hear my niece tell my sister that she is being picked on at school because of her shoes, because of an outfit, because of an answer she gave in class, I get mad, I get upset, I feel such hurt and pain for her. She has been at school for less then 2 weeks and the bullying has started. It's not just an isolated incident, it's over and over again. It's my niece coming home crying because she was teased. It's my niece getting in the car after school and telling my sister that she tried her hardest to fight back the tears when she was the target of bullying that day at school. She's in grade 4, grade 4! These are the years to laugh, play, learn, meet good friends, learn about the good in the world. This is not the time to feel so much pain, not want to go to school, be afraid of your peers. She told my sister that she's afraid to tell the 'mean' girls to stop because then she thinks they will tell on her and she'll get into trouble. She doesn't want to tell the teacher because she thinks that she will get into trouble for being a tattle tale, so it's easier to keep quiet and to not say anything at all. She was so conflicted. Why does an 8 year old have to deal with this?

My next point. Where does your child learn how to bully others? Yup, I'm going to tell you. They learn it from you. That is it. Your child listens to all of your words. Your child watches your every move. Your child is your shadow. When you are fighting with your spouse, when you are gossiping about others, when you are bad mouthing a teacher, another child, a friend, your child is taking in every word, every action. YOU are creating a bully because you are one yourself.
I've seen parents yell at others, other adults, in front of their child and then the following week punish their child for yelling at students on the playground. I have seen a father grab his child by the throat and push her up against the wall, blood shooting out of her mouth, yelling at her, berating her. This meeting was set up because the previous day, she physically harmed a staff member, yelled at the staff member and berated her in front of others.
Your child is a product of you. Do you understand?

I have spoken with parents who deny adamantly that their child bullies others, yet they have been approached by others, talked to by teachers, talked to by parents in the community, but continue to put the blame on others. Talk to your children. Listen to what others are telling you.
It starts in the home. It all starts in the home.

Please sit down with your children. Please discuss their day. Here are some good questions....

1. What was the best thing that happened at school today? (What was the worst thing that happened at school today?)
2. Tell me something that made you laugh today.
3. If you could choose, who would you like to sit by in class? (Who would you NOT want to sit by in class? Why?)
4. Where is the coolest place at the school?
5. Tell me a weird word that you heard today. (Or something weird that someone said.)
6. If I called your teacher tonight, what would she tell me about you?
7. How did you help somebody today?
8. How did somebody help you today?
9. Tell me one thing that you learned today.
10. When were you the happiest today?
11. When were you bored today?
12. If an alien spaceship came to your class and beamed someone up, who would you want them to take?
13. Who would you like to play with at recess that you've never played with before?
14. Tell me something good that happened today.
15. What word did your teacher say most today?
16. What do you think you should do/learn more of at school?
17. What do you think you should do/learn less of at school?
18. Who in your class do you think you could be nicer to?
19. Where do you play the most at recess?
20. Who is the funniest person in your class? Why is he/she so funny?
21. What was your favorite part of lunch?
22. If you got to be the teacher tomorrow, what would you do?
23. Is there anyone in your class who needs a time-out?
24. If you could switch seats with anyone in the class, who would you trade with? Why?
25. Tell me about three different times you used your pencil today at school.

Be the positive and healthy role model that you should be for your children. Be the parent who walks into a parent/teacher interview and the teacher tells you that your child is being awarded the kindness award. That your child is always willing to help others. That your child is a good friend to all students.

I'm going to leave you with this last thought....


The statistics on bullying and suicide are alarming: 
  • Suicide is the third leading cause of death among young people, resulting in about 4,400 deaths per year, according to the CDC. For every suicide among young people, there are at least 100 suicide attempts. Over 14 percent of high school students have considered suicide, and almost 7 percent have attempted it.
  • Bully victims are between 2 to 9 times more likely to consider suicide than non-victims, according to studies by Yale University
  • A study in Britain found that at least half of suicides among young people are related to bullying
  • 10 to 14 year old girls may be at even higher risk for suicide, according to the study above
  • According to statistics reported by ABC News, nearly 30 percent of students are either bullies or victims of bullying, and 160,000 kids stay home from school every day because of fear of bullying

7 September 2014

Pictures and an Update....

Today's post is all about the girls! PICTURES!!! Just in case you missed it ;) I have set up a Go Fund Me page to raise money to buy more goodies for the baskets. I would love to keep the project going, at least long enough so that the girls can help out one day. I don't expect people to donate hundreds, $5.00 would buy a couple of onesies. I just handed out the last blanket but there may be more incentives in the next while... I would love it if we could make the baskets for families in other areas, not just Calgary. The only way that I am able to do this, is if we continue to get donations. Please share Adele's page. We appreciate all of your support. Thank you.

Go Fund Me

I have also set up an online store, where you can buy A Perfect Extra Chromosome merchandise. Profits will go right back into Adele's Baskets. It's a win win!! :)

Adele's Over the Rainbow Baskets - Online Store


A little update on Adele....she had an overnight oxymeter test and she did stellar. Her average was 96, which is pretty great. She continues to grow and gain weight at a good rate. Her pediatrician is quite impressed with how well she is doing. She recently had her yearly blood work done and all of the numbers came back perfect, so there are no concerns right now. I worried about the blood work. I have to be honest, it stressed me out. I was waiting for a phone call telling me that she has cancer. I know that I can't live each day feeling this way, and I don't, but it's tough when our little ones have a greater chance of getting cancer.
We are still working on pooping...yes, pooping. We hope for poops. I think I've even prayed for the poops. I think we will get her going on PEG and see if that gives her the boost she needs.
She was given glasses so that we could strengthen her eyes a bit, but we have not found a band that works yet. We met a little girl yesterday and it looks like the band she has, may just work for us. Going to do a little more research.
She is not sitting unassisted yet or crawling. She will roll all over the place and she knows how to get to where she needs to be. At first, it bothered me, seeing all of these little ones who are seven and eight months, sitting up, but then I realized that Adele is working so hard on some other skills, we will keep at the OT and PT and hopefully we get there soon. Adele is really verbal and makes a lot of different sounds. This makes me incredibly happy. I am learning that our little miracles focus hard on one area and this is what Adele is doing right now. We are working on signing and the whole family watches Signing Times at bedtime. The girls stay glued to the IPad. My, how my life has changed!!
Happy Sunday! :)
If you would like to be a guest blogger, please let me know. I would love to share your journey.