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.