Full Inclusion in Schools

A little over five years ago as I was carrying my unborn baby girl, I was told she would never be able to feed or dress herself because she would be born with Down syndrome. The fear within me took over and I was thrown into a darkness I had never known. I felt our world was crumbling down on us. My five year old, Ana Maria had been praying and begging for a little sister to play with. We tried for months to conceive and when we finally did, we were told our best option was termination.

I had never known anyone with Down syndrome so I believed the doctor and imagined our baby would not be capable of doing much in her life. The next half of my pregnancy was filled with tears and uncertainty, but we wanted this baby so much and we already loved her with all our hearts.

Through the months I mourned a daughter I would give birth to and though it was irrational, I had to grieve the loss of the daughter I imagined when we became pregnant. Our family united more than ever, Greg my sweet soulmate had all the faith in the world, he kept assuring me that our baby would be just perfect the way she was. Ana Maria was looking forward to finally having a sister by her side, she didn’t care about anything called “Down syndrome” her reaction to me saying that she may be a little different from everyone else was “so what mommy?”

I prayed and begged God to cure her before she was born. But a little miracle took over me instead, He cured me, He opened my heart and my mind. This little baby was my daughter no matter what, and I became a mama bear, by the time she was born, we were excited to meet her and pure joy filled the delivery room at the Grey Nuns hospital.

 

I decided to focus on my daughter and who she was, not what she was diagnosed with. With a teaching background, I focused on her needs and interests. I observed what interested her and went above and beyond to help her. Communication for me was extremely important, I made sure to speak clearly to her and describe everything I was doing throughout the day. I spoke to her in Spanish so she would know two languages. Of course I needed for her to be able to feed herself, I wanted to prove the doctor wrong. Jordan Grace had her own determination and drive to do things. She was showing us she was just like our older daughter, she did all things a baby would do. And as she kept growing she did all things like any other toddler did, just in her own time, but she did it!

We worked hard the past five years. We’ve always made books and educational toys the most important tools in our home. Reading every single day has paid off. Our beautiful daughter, inside and out now attends kindergarten and is fully included in her school. She reads her home reading books each week with excitement and pride. Being in the classroom has been wonderful for our Jordan Grace, she’s learned how to follow direction and she’s learning so much from her classmates everyday. She has a very supportive team including and especially her amazing teacher and aide. They have gone above and beyond to include her in all the daily activities. Her speech, occupational and behavioral therapists have also stepped up and come up with lots of creative ways to help her succeed. From the principal to the staff and secretaries who care so much to see her achieve greatness, It truly takes a village to raise our children of all abilities.

Jordan Grace can teach the world a thing or two about how to live life. She enjoys every moment, she lives for today, doesn’t dwell about yesterday and doesn’t worry about tomorrow. She stops to smell the flowers, she says hi to the birds, she notices when the moon is up high in the sky during the day, she enjoys the journey and isn’t in a hurry, she takes her time to reach the destination. But if you are in her presence she makes you feel like the most important person in the world. She loves with her entire soul and shows you in her actions and words.

Inclusion in the classroom is crucial to all children not just children with disabilities. Kids don’t have a judging bone in their body when they are little and growing, they accept and love everyone. Children with disabilities learn by observing other children, and typical children learn compassion and patience from our precious ones with other abilities. These are life lessons everyone needs to grow up with.

Secluding children and hiding them from society has only made us all fear those who are different, I’m a perfect example, I think if I would have grown up and seen more individuals like my sweet girl, I wouldn’t have been in a deep dark hole for months while awaiting her arrival. Some of the fear was the thought of what people would think of my daughter, because there’s a lack of acceptance of people who are different in this world, even now in 2019. We need to change these perspectives and start looking around our world towards those who are different and welcome them in our circles.

So today March 21st it is world Down syndrome day, the 21st day symbolizes the 21st chromosome and third month symbolizes the three copies. People with Down syndrome have three copies of the 21st chromosome. What makes them unique also makes them beautiful.


We were blessed to share out story on CTV Edmonton News today...here's the link

Raising Kindness

This past weekend we had our girls’ combined birthday party. Their birthdays are two months apart and we thought it would be fun to have them together. One big party a year is pretty doable.

Last year we had their first combined party and it was huge! A ton of kids and double the ton of gifts, it took them several days for them to open all the gifts, it was way too much. 

This year we suggested they would raise some money for the Stollery Hospital where Jordan Grace had open heart surgery. We thought it was be nice to pay it forward. They girls were all for it, well Ana María was, Jordan Grace doesn’t yet quite understand, but she does know about gifts and she likes opening them. 

We keep the expenses to a minimum. There is free community skating, all the kids are free and we rent a room with tables. We gather there after skating and have pizzas delivered, we bring snacks, juice boxes, and of course cake. 

The party was super relaxed and fun, no stress, just laughs and friends coming together. The girls had the best time and so did us parents. We couldn’t have felt more loved and blessed. 

The tears however came after the party. After getting Jordan Grace to bed, having more pizza and talking about the highlights. Ana María began to open all the beautiful cards, some of them homemade, but all of them filled with sweet words. I’m proud of my girls, but it’s so wonderful to hear when others say how sweet my girls are. 

And then the donations began to slip from each envelope and my tears just wouldn’t stop. Each bill donated with such love to a very wonderful cause. But the real breakdown, the loud, cry like a baby came when Ana María said “I want to donate some money.” I thought she was going to offer a couple of bucks, but she ran out of her room, I will never forget her beautiful face glowing with pride showing me a twenty dollar bill. 

This young lady had to grow up too fast, seeing her baby sister, the one she dreamed about for years to have, the one she prayed for so much, plugged in to all kinds of tubes in a hospital bed, she knew this money would go a long way. But she also knew what it truly meant to pay it forward. 

This year’s party was beyond a success! The grand total as I write this post is $1,088!!! Kindness is contagious! 💜 Pass it on...

Now I know my ABC’s

I have to say when I finally discovered my vocation that of becoming a teacher, I knew it was my true calling. I loved every second of it. I loved how the children came to school like little sponges, some of them learned differently and so I had to create ways for some kids to learn. But I didn’t like to see anyone fail. I was hard on myself if a child failed, because I’ve always believed that EVERY SINGLE CHILD IS CAPABLE OF LEARNING! 

One day as I was making dinner, Jordan Grace kept coming up to me and wanting to touch the stove to reach up to see what I was cooking. I was in a rush to finish dinner because as usual we had some kind of activity after for Ana María. 

I kept telling her to go get her toys but she wouldn’t have any of it, I finally grabbed the Leap Frog letters from the fridge and placed them on the floor away from the kitchen to entertain her. 

And that was the moment, the moment when she stopped me on my tracks, when I forgot about whatever was on the stove and honestly, I didn’t care if it burned or not. I also dropped to my knees and hugged her so tight, I cried and yelled “thank you God for this moment.” 

Because what she did was amazing! She began to grab each letter held it up for me to see and said the letter. They weren’t in order, she would just randomly pick them up from the ground, as I had desperately dropped them, and run back to stir whatever was on the pan. 

All that work, all those different activities I had placed in front of her, I’m not exactly sure what the magical teaching tool was but I’m positive it had a lot to do with consistency, perseverance, repetition and determination. I already knew she was capable! 

No matter how much we stress about our children typical or not, of how long it will take them to learn something, they will do it in their own time. But for my girls, it has always been a variaty of different tools.

Here are some of Jordan Grace’s favorite abc products. 

 

We are all her teachers

I received my Master’s degree in Elementary Education in Tucson, and I was blessed to teach second grade for about four years before I married Greg and moved to Canada eleven years ago now. 

Teaching was my true calling, though I didn’t realize it until after I graduated from the Univeristy of Arizona with a Bachelor’s degree in Busniess Management. I worked in Human Resources for a year and I knew that career was not for me.

When my oldest Ana María was born, I began to teach her things I thought she should learn. By the time she was in preschool, she could write her full name, yep, I taught her to write her entire name “Ana María” in her assignments and everything else she brought home.

On Valentine’s Day I realized her valentine cards were the only ones written by a child. Every single card that came home was written in either cursive or neat handwriting obviously done by an adult.  I was beaming with pride.

I do realize that I’m blessed to be home and guide my kids through the process, I cannot imagine coming home from a long day at work and having to sit for a few hours with both girls to do homework. There’s more time in the day to learn by play when a parent is able to be home. So I do count my lucky stars.

Fast forward to a Down syndrome diagnosis. Sometimes the unknown is a lie unfolding. I can honestly say I knew nothing about Down syndrome when I was told that Jordan Grace would have Down syndrome, I assumed the worst because the doctor said life would be hard, she wouldn’t be able to feed herself, or do anything for herself, he made it sound like she would be unteachable. 

When Jordan Grace came along, I didn’t acknowledge the diagnosis. I wasn’t in denial, I knew she had an extra chromosome, but she wouldn’t be defined by it. I was determined to get to know her for who she was, to know her personality and to learn what she needed from me, from us, from the world, before anything else. 

So I began to study her, sort of, I followed her lead, if she was curious in how a toy worked, I’d let her discover, if she was interested in eating toys, I made sure I got her the ones that were safe to taste. As she grew and grew, she began to show me she was capable of anything. 

Today, we have so many fun resources, she loves to learn, she loves to explore and she loves school. We have realized that she learns by watching others and imitating. She’s a fast learner and is interested in EVERYTHING. 

Here are some fun things she enjoys and work for her. Of course everyone is different and learns differently. My best advice is to know your child, know their interests, their loves and know you are their first and most important teacher. 

These felt ice cream counters are wonderful. I found them in the dollar section at Target. They have velcro to separate the ice cream scoop from the come. She counts the sprinkles and then matches it with the number on the cone. 

These pom pom balls are colorful and small enough to grab with different motor skill tools like these helping hands pack. She matches the color ball to the color ikea cup. 

These are felt shapes paired with lace to string all around. I got these at the awesome dollar section at target but I found these similar ones on amazon. 

She loves to color on anything and everything if I give her a pencil or crayon, so we are huge fans of any wonder or water magic tools. This Melissa & Doug water reveal pad is wonderful for tracing the alphabet.

Jordan Grace LOVES books so much, Elmo Clap Your Hands is fun and interactive. She places her tiny fingers in the Elmo puppet and hugs the babies and herself. It’s so adorable to watch. 

One of her very favorite things to do is “cut, cut” she used to say that before she could say “scissors” each Sunday when we go to Mass I have my bag of tricks, in it is always paper and scissors. It keeps her entertained. For Christmas we gifted her this awesome pack to teach her how to follow lines and cut straight. 

Hope you enjoy our ideas and tricks. Lots more to come. 

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I Wish We Were All Color Blind

I vividly remember the first time I explained to Ana Maria that people had different color of skin. She had come home so excited to let me know that there was a new student in her class and that she had made friends with her so that she wouldn’t be alone at recess. This is the kind of girl my first born is. She’s the kind of girl who accepts and loves everyone, equally, no matter what. Sometimes we tease her and ask her who she loves more, mommy or daddy. She always gets uncomfortable and says she loves us both the same. 

When I asked her what her new friend was like, she immediately said “she’s very nice,” I kept asking questions like did she move from somewhere else in the city or is she from another city? She said she was from another country but couldn’t remember which one. I then naively asked her what she looked like. She said “I don’t know.”  She didn’t seem to have any idea how to begin to describe her. Somehow she finally said she looked like another friend, who is African American. 

So I asked her “is her skin black” and she looked at me puzzled, she then said “I don’t know!” So I went on to ask her if her friend’s skin was darker than mine and hers, she kind of closed her eyes to remember what she looked like and she said “yes” almost like a light went on in her little head. I then realized that we had never spoken to her about differences of people’s skin. 

We had mentioned how Jordan Grace was difference because she has Down syndrome, but even when we tried to explain to her that she was different she kept asking how was she different, she couldn’t grasp that she looked different than anyone else, she had hair, she had eyes, she had arms, I mean she looked like us, she looked like a little girl to her. And when I tried to explain to her that people would see the difference even though she didn’t see it, she said “so what if she’s different” it really didn’t matter to this big girl who had been begging for a little sister in her life. 

Ana Maria has grown up in a very culturally mixed school, which has been such a blessing. The fact that it took her until she was in 4th grade to realize people had different skin colors, I mean, I don’t think she’s color blind, but rather innocent at heart to see any difference. Her very best friends and who she always wants to be around is this very friend we speak of here along with another sweet little lady who is Philippine, and another who is part East Indian. I love that about my precious girl, she bases love on a person’s heart, not where they come from or the color of their skin. 

I wish we could all be this innocent and pure at heart, I wish we were all color blind to people’s skin and I wish everyone was accepted and included no matter what they looked like. Maybe one sweet day...

Believing in magic

I have a precious 10 year old who still believes in all kinds of magic. She’s the kind of girl who believes in fairytales, who still looks forward to the magic of Santa Claus, who believes in the elf on the shelf, she loves magic shows, and learning tricks to share. She’s the kind of girl who believes all people are good and sometimes when things happen in this world, we have to remind her that bad people actually exist, her puzzled look and question is always “why” she can’t comprehend cruelty, tragedy and evil. 

Tonight she lost her 8th or so tooth. And so I’m always amazed of the beauty that she savors the process of losing a tooth, placing it under her pillow and waiting for the tooth fairy to leave her a surprise. But she also takes her time, tonight she said she wants to wait until we are back in Edmonton to place it under her pillow. 

I love that even in this day and age where kids her age are so advanced, that she can hold on to her childhood so passionately. I love that even though I came close to ruining it all for her years ago when we ended up at the wrong Mall, when we were meeting friends to take pictures with Santa, and then rushing over to the right Mall, that though she was very confused and surprised to see two different Santas she was able to continue to believe in the magic of the season. 

Tonight I’m reminded of the beauty that can still live in our hearts and project to the world around us. If we can hold on to magic and goodness, why can’t we spread it like wildfire? We can at least try. I’m proud that Ana María is my daughter, that she’s innocent and pure, that she believes in all things good and though this world is backwards and scary at times, that there is beauty in our world, and it lives in the heart and souls of our precious children. 

These lyrics are so powerful for me tonight...

“I still believe in Santa Claus, maybe that's just because I'm still
A child at heart,
And I still believe in old St. Nick, but then again maybe that's the
Trick we need, we need to retreat to a world of make believe.” I still believe in Santa Claus by NKOTB

New Year’s Day

I’m not a big New Year’s resolution kinda girl. I’m not into doing anything every single day. I don’t really like to commit to challenges all the way. I’m also not good at doing something specific each day. I’m more of a practical ‘I know what I’m capable of doing’ kinda gal. This year like every year, I will try to be more patient, have more peace in my life, be more content and happy with the cards we are dealt. I will declutter, like I do each year and though I signed up to this “challenge” I know I won’t follow it as closely as it says, it’s not that I don’t like following directions, it’s just that I’m more of a ‘go with the flow’ kinda girl. 

Some days the girls may require more attention or I may just want to call it a pj day. I’m not structured to follow things on a daily basis. I’m not sure I ever was, whether I may forget or whatever the reason, I simply know, acknowledge and accept that I’m just not made that way. Even when it comes to prayer, I sometimes forget to pray before a meal and the girls will remind me, or prayers at night with the busyness of the day, Greg may have to lead in prayer. It’s funny because prayer is natural to me, but that’s just who I am.

For better or for worse. It’s truly a miracle I have dinner ready for the family each night. 😂

Games for Special Needs

This summer, I came across this wonderful account on Instagram, ran by parents like us. Parents who have studied their children to learn what works best for them. 

Sound familiar? 

As parents we tend to live and breathe to help our children succeed. We think of things to create that may work for the way our children can better learn things. 

These parents get it! And because they are parents of a child with special needs they understand working hard to make something that will work for our children is worth all the time, swear and tears.

These games are created to help our children share their feelings, while having fun they can also learn to express themselves. Head on over to Games for Special Needs and back them today on their kickstarter link! 

Jordan Grace has a couple of their interactive games and we spend tons of time playing together! They are fun and engaging!

Click here to back them on Kickstarter

She gets mad too!

(Photo: Melissa Danielson )

This little lady has her moments. No, she's not always happy, she's not always sad or mad either. She's a regular 3 year old. In fact today at school, they told me she's a bit "naughty" like all the other kids in the classroom they said. 

I have to say I was shocked and it did bring me to tears. I'm not perfect in any way, I'm just a mom who wants her children to be loved and to be accepted. I was brought to tears because I want for Jordan Grace to be herself. However, she learns by watching, she imitates anything, ANYTHING, anyone does, good or bad, she does it! 

It's a blessing in some ways that she's great at imitating, but it's a curse when she imitates and gets caught doing things wrong. You see, she won't tell on anyone, but others tell on her. She fights her own fights and I need to let her do it. 

But today, I was emotional and mad, and needed to get my point across. Today, I observed a little girl take all of my daughter's materials away, I saw this little girl take advantage of my little girl and this mama bear was not a happy camper! My blood boiled. However, i said to the little girl as kindly as I could "you need to share." And then I told on her! Yes, I did!!! 

I called the teacher right over and I explained what I saw. I know I can't always be there to stand up for her, or to teach her what others are doing is wrong, but I also can't help my heart breaking when I see others disregard my precious one. 

I have the most faith in her! I know she will fight for what she wants, today, she chose to give the little girl all her materials and show kindness, another day she might have grabbed on to the cotton ball for dear life. This is my girl! This is the girl I'm proud of, the kind one, the fighter, the loving one, the sweet one, the determined one, the joyous one, the moody one, the one who brings us daily sunshine! I'm proud of all of her! 🌸

LIFE is Better With You

Lately I have been receiving a lot of private messages of beautiful mamas looking for advice and guidance. I am an not a professional, however I call myself a professional mama. Why? Because when I was pregnant a so called professional told me all the negative things about having a child with Down syndrome as if he had experienced it first hand. I just assumed he was right, that he knew what he was talking about. But, now I know, he had NO CLUE! 

He was wrong about pretty much everything, because my daughter CAN and DOES. The only thing I have no proof as of yet is: in his words "she will end up in an institution," I pray he's wrong about that, he tried to scare me and put that horrible fear in me. His main goal was termination of pregnancy. My main goal was a precious little baby to complete our family. 

However I could list all the things Jordan Grace could do, but it would take a million posts. What I can say for sure is that she has grown up like her big sister, I haven't done anything different except the given therapies. 

She is my teacher, and as her mother, I look for teachable moments and encourage her when she wants to do ANYTHING. That's right, I do not limit her, ever. I stand by her and help her. Life is better than I imagined. 

The only way someone can truly know what I mean is if they walk in our shoes, and becomes a professional mother of a child with special needs. We do get paid, with tons of joy, endless hugs and so much pure love. It truly is a secret society and I'm proud to be a part of it. Blessed beyond belief. 

This picture was taken seconds after she was born! We looked into each other's souls! We were instantly more in love than before! I'm truly blessed! 🌸

Impact

Sometimes things don't seem to affect me as much, but when it comes to my personal story and experiences, things such as words can bring me to my knees in pain. 

The other day a friend posted that she had heard of a couple who found out their child would be born with Ds and had an appointment scheduled to terminate their pregnancy. She asked us parents to chime in on what we would say to someone in the situation we were basically in however many years, months or days ago. 

The waterworks came immediately, I wasn't finished reading the post when my eyes were burning with tears. My heart sunk and my being went back to that deep dark hole I fell into more than three years ago. 

My "now" self wanted to tell my "then" self everything was going to be ok, that I shouldn't feel sad, mad or in horrible dispare, that this baby, this sweet girl was going to show me what her life was all about. I wanted to tell my "then" self that I was being melodramatic, that all those tears, all the yelling, all that being angry with God was literally not necessary, let alone a waste of precious time. 

But I had to stop myself and realize that I had to go through all those feelings and emotions, that only if I had known Jordan Grace herself, I could never be satisfied with knowing what it would be like to have a child with Down syndrome. Because anyone deserves to grieve the child they think they will have. The child that they perceive as their own perfect child. 

I still don't know what to tell my "then" self, the woman that suffers today with these news of diagnosis, or the ones who are yet to come. They call us the lucky few for a reason. I always say we live this amazing secret society, where only the ones who live it can understand, appreciate and rejoice in it. It's unlike anything else I've ever known, it's something that people can share with you but unless you dive in and swim in this pond of beauty, you may never know.

Because in the end, my child, our Jordan Grace, is truly better than who we expected her to be. I think it's safe, although sad to say, that I had very low expectations. Basing it from what the doctor lectured us, she would be incapable of being human I guess, he described someone who would be dependent, someone who needed help to do anything and everything. 

We all talk about it within our community, the way the news is delivered can make you or break you. It certainly broke me. I wasn't expecting to feel the way I did, to think that the hardest decision to make would be to continue on and live this life we were told was horrendous. 

Full of Worth!

 

Last week our Down syndrome community  was shaken to the core with the news coming out of Australia and Iceland. Many of my social media friends began posting their feelings and thoughts all over their blogs.

I wrote a little blurb but my heart is left confused and aching for sweet precious ones lost and babies who never had an opportunity to live.

When I found out that our Jordan Grace would be born with Down syndrome while I was pregnant. The first, well only option I was given by the professional was abortion. Right away he gave Greg and I a lecture about all the negative things we would face and horrible life we were about to discover. 

I sunk so low to a deep hole, my thoughts could only see what this doctor was describing, a life for my child that no mother wanted to picture. A life of pain. Some days I was completely numb to the world, I was so deep in dispare I felt like the only way out would be without this baby. 

We had been wanting her, praying for her, and trying to get pregnant for so long; why was this cruel world making me feel like I didn't want this precious life I already loved inside me? 

The answer was fear of the unknown. People are afraid or reject things that are not common to them. It's our natural instinct. But I'm here now as a witness of a life with An extra chromosome; and let me tell you, it's nothing to be afraid of, it's different, but nothing out of the ordinary. In fact, Jordan Grace has the same feelings and personality as others. 

I know I won't convince non believers of change and differences with my words. It would have been hard for me to understand looking in from the outside. 

What I cannot understand is why people think it's ok to terminate certain pregnancies. It's the woman's choice, but when it comes to disabilities everyone is up in arms about it. I say when it comes to human life EVERYONE should be up in arms about it. Life is precious, with living and enjoying. So why does the life in the womb not get a choice? 

It's a fair question. 

I'm here as a professional mother to let you all know that my daughter not only deserves to live, but she deserves respect, love and to be included. She is the light of our world! I wish the world could see that. 

Giving Herself Layers.

When Jordan Grace was little and even before she was born I was told she would need all kinds of therapies. The thought of having people work on my girl made me nervous, not because I don't believe in therapy, but because people didn't believe in my girl. The therapists  right away began to tell me about all the problems kids would have using anything from pencils to scissors. 

I am more of a believe it when I see it kind of person. So I waited for her to be born before I thought of anything that she wouldn't be able to do. I had more faith in her than most of the professionals I encountered. In my heart I felt she would be capable of more than the statistics that I chose not to Google. 

Fast forward to today, as we drove to the ice cream parlor, my mom and I were deep in conversation. We were headed to celebrate the first day of school for my precious niece Natalia, in the backseat sat my little lady quiet. I had placed Natalia's backpack beside Jordan Grace without a second thought, not sure why, I've always been proactive and sort of saw the danger of things I place next to her. I noticed she was curiously looking through her backpack but since it was the first day of school, I thought there would only be paperwork in there. As a former teacher and an experienced mom to my Ana Maria, an almost fifth grader, I've never known kids to keep scissors in their backpacks. They have always been left behind in their cubbies or desks at school, so call me crazy but I never thought that would be something she would find.

The image through my rearview mirror was one I won't forget. She proudly grabbed a piece of her hair over her eyes and placed the scissors just right, holding them in perfect form, it would take me a little while to process how proud I was for her skills. But first the shock of her about to cut her beautiful locks brought panic in my voice and I yelled, so loud in fact I scared her to tears. 

Mom reached back to take the scissors away as her lips began to tremble and she began to cry with passion. I didn't know if to laugh or cry, but I sure was in shock. All I could think was "her pretty hair is ruined." All those posts about other friends' kids cutting their own hair came to mind. I had just seen one recently on social media and thought it was so funny, but also thought of the dangers of having tools around that could cause harm. It wasn't enough to prevent this episode from happening today.

When we arrived at our destination, I opened the backseat door and saw her beautiful long locks on the seat and on her clothes. I wanted to make sure she knew that what she did was wrong. So I gave her a little lecture with words she would understand. 

"Jordan Grace, cut el pelo, NO, NO," she looked at me sweetly and shaking her little finger she repeated "cut, cut, pelo, NO, NO." We laughed about it in the restaurant and Ana María said proudly "Mommy, at least she knows how to use the scissors." Truth! Our precious one knew what she was doing, she knew what scissors were for and in her defense she probably couldn't reach the paper. 

 

3 Year Heartaversary

Three years ago tonight I couldn't sleep, our precious five month old was about to go in for open heart surgery. I felt I had to prepare for death but pray for life. All of my insides were shattered. I couldn't seem to find a way to breathe. One of the longest nights of my life.

 

Fear didn't leave my body the next day, my whole body filled with shakes, I couldn't feel God telling me it would be ok. I felt a blank outcome. Unfortunately some of my faith had left me. I continued to pray with my family, but it was almost like an out of body experience. I knew I was praying, but I didn't feel the prayer. 

I wanted to know the outcome, I needed to know my precious baby would be ok. We knew at twenty weeks pregnant this day would come. I prayed for a miracle, the kind of miracle where God would fix her and no one had to open up her precious heart. 

We had countless fetal echocardiograms and she had some after she was born as well. Each time we went in for the appointments, I left disappointed when they told me she still would need surgery. 

When we arrived at the Stollery, it still felt unreal, my heart was pounding out of my chest, a nervous jitter took over my body. It was difficult to focus. Thank God for my family who helped me, literally guided me and spent the hours trying to keep my mind off of things. 

 

Nurses came to let me know it was time. I was placed on a stretcher where I held her as we were rolled towards the operating room. She was wrapped in the tiniest hospital gown I had ever seen. She looked into my eyes as I cried silently, her stare trying to speak to my soul. But the fear would not let me feel, I was numb. When they took her from my arms, I let the tears flow as I said "please bring her back to me."

 

I remember thinking how difficult her diagnosis had been while I was pregnant, but this feeling of maybe losing her was beyond what a mother should ever feel. 

The hours were torturous, I didn't want to step too far away from where the doctor would come talk to us. He finally appeared at the end of the hall, he looked defeated and my heart sunk. I told Greg, "I don't think it's good." When he finally reached us, it felt like forever until I could comprehend his words that basically our baby was alive and well. 

 

And so I cried tears of hope and of gladness. 

This time of the year may never get easier for me. The reminder of how fast our lives can change sometimes is unbearable. Today I thank God that He carried me through this difficult time in my life, and that we are now past it. Our Jordan Grace's heart isn't perfect, but it's working well the way it is. My heart as her mama will always worry. But I'm so proud and blessed that she is ours! 

 

My cover girl!

 

This is my daughter Jordan Grace, I made this cover using an app. The fact is that people like my daughter aren't as common  to grace the covers of magazines. I became her advocate as she began to grow, because I wanted her to live in a world where all are respected and included. 

This was the last thing on my mind when I found out my baby would be born with Down syndrome. In fact I was so scared of the unknown and how my world would change.  Both of my daughters have their own beauty. They are not the exact image the ad world represents. But I'm driven each day to bring a new norm to the beauty of every sweet child out there.

 In the past few years, I pushed, I knocked on doors, I spoke to many individuals and ultimately I did not give up! When I found my team, together we brought Changing the face of beauty to Canada. I asked Our Canada Magazine to take a chance on us, to bravely place a child with Down syndrome on the cover, to be the change we want to see. The incredible team of Our Canada Magazine has given so many individuals and their loved ones hope for a brighter future. This wonderful magazine made 20 beautiful and unique models' dreams come alive. 

I'm so blessed to know such amazing people in my life. This "Parents" cover is not in stores. Maybe one day, but get the latest copy of "Our Canada Magazine" in newsstands now! ❤️

RIP Chester

 

I was at my friend Lals' house when I found out I would meet my favorite band of all time. I had been a fan since day one, since their first hit "One step closer." Back in the day I went to their concert in Phoenix and sang as loud as I could to every single word. I remember how amazing that day was! Snoop doggy dog opened for Linkin Park, he entered the stage riding a tricycle, I laughed so hard and was anxiously waiting for LP to come out. They were incredible live! Best show I had ever attended.

Life continued to unfold for me, their unique sound intrigued me and though it changed with the years, I continued to be a faithful fan. When I was sad, angry, happy, and any emotion in between, I would listen to LP. 

Greg is a country music guy so he never "got" my love for Linkin Park music, most people who knew me didn't get it either. But I got them. Their incredibly talented sound just kept me coming back for more.

These guys sang loud, hard and with true emotion when I needed it the most. Through my travels, getting married, health issues, Losing my dad, and loved ones, through happy times. Their music was just a click away. 

My precious first born singing their words, made me a proud mama, though my mother in law would tease me I was raising a revolutionist, 🎶 "we're building it up, to break it back down" 🎶 I was proud she had the same love for them. 

September 2nd came and I could not wait to finally meet these six guys who I knew within me, these guys who's music had been part of my ups and downs. The whole experience seemed unreal and I began to think that the email might be fake, or we would run late for the meet and greet, or that something would happen and my big chance would never come. 

But my dream was coming true, they transported us to another building, we were lined up and were given a few rules. 

And then the big moment, the guys began to come out, I couldn't believe my eyes. I wanted to scream and be a total fanatic. But I kept my cool. They made small talk with each of us. When Chester approached me, I reached into my purse and took out an Arizona deck of cards I had brought him, a little something to connect to him. He was so genuinely thankful and kind with his words, he said they needed a new deck and placed it in his back pocket before signing his name on my cd cover. As he was walking away he joked about how cold Edmonton was in September. I remember laughing and saying "bye Chester." 

Seriously on cloud nine, just meeting these guys we were taken back to the concert. I called Greg who I made sure was closest to the stage as possible holding our spot. I tried to get up to where he was but it was impossible, he had to come out of the mosh pit (he's never let that one go) and meet me at the side of the stage where I could rock out and sing as loud as I could to every single song from the past ten years! ONE OF THE BEST NIGHT EVER! My love for this incredible band just kept growing. 

I never thought they would carry me through the most difficult time in my life. Before and After Jordan Grace had open heart surgery I listened to "Final Masquerade" on repeat. The words "the scars began to fade" had great meaning to me. I had been worried about the long mark that would be left after they opened her up to fix her. Her chest would always show what she had gone through. I always saw it as a bad thing. I remember the tears flowed like a river down my cheeks. Anytime I could be alone with the song I would take my moment to let it all out. Hoping to heal myself from the fear I had of losing her. 

 

It's been one week since Chester passed away. My heart broke into pieces as I read on social media about this horrible news, it's ironic that Ana María, second biggest fan was with me at time. She saw the horror in my face as tears began to run down my cheek. She asked "mommy, what's wrong?" I was in shock and could not speak. I wasn't sure how to tell her. The words finally left my mouth and we hugged in the toy isle of Target. 

I received so many texts and messages from friends who knew what a true fan I was. It truly meant the world to me to know that they thought of me as soon as they heard the news.

 

I cannot imagine his unbelievable pain the last moments he lived, all I can think of is our Lord embracing him with love, and taking all the bad he'd endured in his short life away.

Our actions, our words, our songs have an impact in this world. His cry for help all these years through his music helped to save millions, in the end as his pained voice sings "no one can save me now" he leaves a huge void in all those he has touched. 

My heart aches for his precious family, his friends and us fans. Rest In Peace Chester and thank you for helping me through the trials and the triumphs. You will be missed. 

 

She is unique

 

We didn't know what to expect when we were given Jordan Grace's diagnosis. We were worried and we feared the unknown. 

Our lives couldn't be better. Our family is complete and hindsight is 20/20. If we would have known and experienced this life when we were given that diagnosis we would have been cheering and extatic. 

And now we want to shout it at the top of our lungs. Down syndrome is just a diagnosis, it's not a death sentence, it's nothing to fear, it doesn't define our daughter.

Some people may only see her diagnosis when they see her and we can't help that, but we have noticed the change in people when they see what she is capable of doing. We see her perseverance, we see her live life to the fullest, we have front row seat tickets to her life and we couldn't be more proud of this little lady. 

Life is good and God is great! 

Blessed beyond measure is what we are! 

Toothbrush Pillow

Our precious ones can do anything they want to do...some may need more help than others.  

This awesome invention is called a toothbrush pillow, it's a sweet way to give our littles the independence they need.  Jordan Grace loves brushing her teeth, she asks us all throughout the day to by rubbing her finger over her teeth with brushing motion while saying "teeth"

I love our wonderful community and how social media has connected us with so many wonderful friends and great resources such as this awesome product. 

This product is definitely Jordan Grace approved!!!

Our Mighty Super Hero

This little lady has endured so much in her sweet little life, more than anyone would even dream of. Somehow the cliche is right with her. She is happy, she is loving, she is everything sweet and positive people say about those we love, living the beauty of Down syndrome. 

She is our hero, she goes through hospital visits and sicknesses with grace. She rested in bed one morning, wanting mommy by her side saying she was "happy" and smiling. She asks for cookies by signing and saying the word to nurses and doctors because one day while we were waiting in yet another emergency waiting room, I taught her to sign and say cookie, so she associates it with hospitals now. 

From what I know without comparing, I can tell you my sweet little lady has changed my heart. My first born, Ana María was always bright and loving and everything good there is in this world. She was my first teacher on how to mother.

Jordan Grace is not only my teacher of mothering as well, she teaches me about her abilities as an individual who is looked down upon in the world. A condition that is rapidly terminated in the womb. 

I cannot comprehend for the life of me why someone wouldn't want a precious one like her. Don't get me wrong I was in that same boat thinking this is not what I wanted and "why me, God." I'm sad to confirm that I too mourned my daughter to be and lowered my expectations to a baby that would be disabled. 

I can understand why it is called a disability, except for the fact that even they can do anything they set their minds to, it's just at their own pace. I have seen it every single day, these past incredible three years we've been blessed with our, yes! Here I go again, our "precious gift from above."

I wish this world's perspective would change to a more open and loving one. Acceptance, inclusion and respect to those who are different should be our first instinct. The fact that she is here now, more than ever I want to bring awareness to our loved ones and how they can live a full and successful life, if we all just give them a chance. 

"You are strong"

(This is seconds before I have to hand over my precious baby to the nurses at the Stollery, my heart is in a million pieces as hers is about to be fixed.  My eyes swollen, my nose red from all the crying, it's only the beginning and I'm about to be on my knees in fear of the unknown)

I am humbled every time I hear that phrase. I hear it from everyone, those who know me and strangers I speak to. I'm just wondering, why do people say that? Is it to make me feel better? To give me hope? Give me pride?

I'm not sure why I hear this when I share our story, but I do. Even back when I was pregnant I heard it all..."God only sends these special children to the strongest and most loving parents," "I couldn't imagine a better family for an angel like the one you will have."

I'm not sure that's true. I do however know that us "lucky few" are families who plan for normalcy, we plan for a simple life, we plan for an amazing future for our children.

When we were given a diagnosis of a heart defect and Down syndrome, we fell to our knees with despair, we could not imagine that future we longed for for our precious one.  Our dreams turned to darkness and uncertainty.

At my darkest hour, crying and weeping, asking God for a miracle, loved ones still called me strong. I kept thinking is there something I'm not seeing in myself?

Our gift from above will be three years old next month. It's hard to believe how fast she's growing. As soon as she was born she brought us so much joy, we learned that she truly was incredible and that her diagnosis was just that, a diagnosis.

She is so much more than we could have imagined, and she has made me a pretty incredibly strong mom/woman.

I would do anything and everything to protect her, to make sure she's included, loved and accepted. I have become her number one advocate.

This is not what we imagined our second child would be like, in fact it is much better than we could have ever dreamed. She is her one little person, she has feelings, she has the best personality, she's funny and loving, she's caring and daring. She is unique just like every other child in this world. I couldn't be more proud of her.