15 March 2015
A Cancer Diagnosis
Dear Belinda,
This week you found out that your son has Leukemia. Your world came crashing down and your worst fears came true. You are staying strong for your family and friends but I can see the worry and hurt in your eyes. As a parent of a child with Down syndrome, this scares me. I worry about my child's future and if we will travel the same road as you. The day you found out, you reached out and the response showed me that you are surrounded by an amazing community. A community who loves you. A community that wants to hold you, protect you and lessen your heartache. In the midst of all of this, you continue to be a good friend to others and you continue to be supportive of those travelling their own journeys. My heart hurt for you this week and because of Grayson's diagnosis, I have decided that Adele's Over the Rainbow Baskets - Down syndrome LOVIN will now make baskets for families who have a child diagnosed with cancer. I delivered two this week and realized that I have the opportunity to bring some comfort to families who are grieving.
I am your friend and I will always be your friend. I will support you and Roger in any way that I can. I will cry with you, I will laugh with you and I will listen.
C....
Seeing you today you looked so sad, so worried, so tired and so beautiful. You looked like a momma who would do anything for her boy and is so scared of what is to come. Although our journeys differ I know those feelings and the fierceness of them. After losing one baby and almost losing my eldest, I wish I could protect every momma from ever feeling those feelings but that is not life. Instead I hope I can lessen the feeling of isolation that comes with those fears.
From a mom who has feared what the future has to hold for her baby, or if there would be one, you are never alone.
From a mom who has held her tummy, telling that baby I will protect and care for you through all this stress the best I can but it might get rough, please stay safe.
From a mom who felt angry that I should be enjoying this baby that is coming but I needed to care for the child that is so sick and sometimes I didn't know how to do both.
From a woman who wanted to be surrounded by friends and family in one moment, and in the next, left alone with my child, to hold and smell and feel them without interruption, and in the next wanting to run as far away from that room as I could get, and yet you can't imagine ever leaving their side.
As a wife I didn't know how to share my thoughts and fears with my husband.
It is all part of the journey...along with so many other experiences and emotions....and you are not alone.
Our journeys vary but most test relationships. Lean on those you know you can, forgive those that can't be there the way you'd like them to. Yell, scream, cry and laugh when you need to. Be kind and gentle and forgive yourself when you feel guilty....maybe not right away but eventually.
I will think of you, Roger, Grayson and that little babe every day. I will send prayers and loving, healthy vibes. And if you ever need anything I will do my very best to be there for you however I can.
K...
We come into this world, not knowing what the future holds, but what I have come to realize, is that we all need to support each other. We will meet many people along this journey, some will remain friends and some will continue on their own paths. What's important, is that we take care of one another, respect one another and know that sometimes the journey takes us in a direction that we never expected. With the help of those around us, we will prevail. We will become stronger, We will make it. It will be ok.
Love,
Krista and Chrissy xo
*** If you would like to donate any new baby items or special items for mom and dad, please feel free to send me a message or email me at krowland23@hotmail.com
Thank you!
Our two fundraisers....Please check them out and help us continue to make baskets for very deserving families.
Stella & Dot
Jamberry Nails
9 March 2015
21 Reasons.....
It's almost World Down Syndrome Day!
On March 21st, we will celebrate differences, we will celebrate being unique, we will celebrate all abilities and our wonderfully made children.
21 reasons why I love my daughter and how she has made our world a more beautiful place.
1) Her infectious laugh.
2) Her beauty; inside and out.
3) Her gentle ways.
4) How she has inspired others to do good.
5) How she has impacted so many lives in her short 19 months on earth.
6) Her ambition and drive.
7) The way she makes others feel. She is full of light and love and the world sees and feels it.
8) The joy and happiness that she brings to her family and friends.
9) Her brains.
10) She has taught us to not judge others, but to listen and learn about their journey.
11) She wakes up smiling and this has set the tone for how the day begins. It's beautiful.
12) She has shown us how to love. How to love the right way, deep and with raw emotion.
13) She has taught her family that we don't always need to be in a rush, but that we should enjoy the moment.
14) I love that Adele, since day one, has pushed her family to be better people.
15) Her love for her sister. It's a love like no other.
16) I love Adele because she naps. I love napping children.
17) Adele has inspired me to give back to the Down syndrome community.
18) She appreciates snuggles and I love to snuggle.
19) She has brought the most amazing people into my life. I wonder how I've made it this far without knowing some of these amazing women and men.
20) She dances. It makes me smile. It makes me laugh. It brings me so much joy.
21) Adele has this way about her that makes my world a perfect place. She grew inside of me for 35 weeks. I worried. I cried. I didn't know how to raise a child with Down syndrome. When I met Adele for the first time, I was overwhelmed with emotion. What I soon came to realize; she is not Down syndrome. She is my child. She is my heart. All I see is her love for life. It's a beautiful life.
“When you look into your mother’s eyes, you know that is the purest love you can find on this earth.”
Mitch Albom
20 February 2015
An Open Letter To Tom Leykis
Tom Leykis,
Yesterday as I was scrolling through Facebook, I came across a post that you shared on your wall. I remember looking at it, thinking that the person who added the words "This will go DOWN in retard history", must be one of the biggest assholes on the planet.
I was right.
A handful of friends told me that I should let it go, don't focus on another person's ignorance, just move on. The thing is Tom, it hurt, to the core. When it comes to my children, my family and my friends, I don't just move on and sweep revolting, disgusting and uneducated comments under the rug. I fight for what is right.
I thought about not sharing your post, not asking my friends to report your post and page to Facebook, but I realized that people like you need to be taken down. This is not the first time that you have publicly attacked those with special needs.
You have attacked the wrong group of mothers, fathers, sisters, brothers, grandparents, aunts and uncles. Your ignorance and shameful words have made their way all across the globe and people won't stop fighting for what is right until action is taken against you, against your Facebook page and against your radio program.
I read a handful of comments on the post that you shared; your response to those who left messages, expressing their upset and concern was that of a very shallow man. You attacked back. You continued to bash and use language that only an uneducated person would use. You went to google and copy and pasted inaccurate statistics off of the web. Your comments about how only old women give birth to retards couldn't be farther from the truth. Did you know Tom, that 80% of babies born with Down syndrome are to women under the age of 35? No, I don't think you knew that. The word retard Tom gets used by those who are uneducated and ignorant. You fit this category. You fit it very nicely.
After a lot of thought and reflection, I just wanted to tell you a few things.
1) Adele is my child, she was born with Trisomy 21, that is Down syndrome.
2) She has positively impacted more lives in her short 18 months then you will in your entire lifetime.
3) She doesn't drool as you said in a previous post about Special Olympics but I would be curious to see what your pillow looks like in the morning.
4) Adele is beautiful and smart. I will not comment on your looks.
5) Adele has feelings and so does her friends and family.
6) Adele and her friends will grow up to be productive members of society, you on the other hand, have not grown up and I fear that your maturity and IQ are stuck at the level of a toddler. But wait, I do not want to insult toddlers all over the world. I fear that your way of thinking will be stuck at that of a worm, yes, a worm.
7) Adele has a sense of humour, whereas you do not.
8) Adele makes the world a better place, you Tom, have embarrassed the human race.
9) Adele also has a Facebook page and is by far way more successful than your page. Your amount of followers shows me that you are not a role model, you don't share information or stories or post articles that the world cares about.
10) My child is a miracle. She has taught people all over the world to be kind, patient and to not judge others. You have done the opposite.
My emotions are running high right now and some of my words are harsh. I try not to judge others. I try to find the best in people. I am just so repulsed by you and to be honest, it's really difficult to be any other way at this point. I do not want to stoop to your level, but at this moment, I am angry and enraged.
Your post on Jamie Brewer was removed by you or your admin. You removed all comments pertaining to the post. Where is your public apology? Where are your producers in all of this? My daughter and her friends deserve a formal apology by you and your team.
You know what Tom? Although I think that you are a major douche bag, my child would forgive you. Her friends would forgive you. Our children have beautiful hearts and beautiful souls. You do not deserve forgiveness but to be as shallow as you, it is not in my nature.
We all make mistakes. You are a public figure and your voice carries some weight. Do what is right.
Sincerely,
Krista
15 February 2015
I Have To Love My Children, My Friends, Not So Much
The other night as we were all laying in bed, reading books, I looked at James and said "it's crazy how we still love our children at the end of the day."
He laughed.
I sort of fake laughed.
I turned the tables and thought about if our friends acted this way, we would be ending a lot of friendships. I think I need more fresh air. ;)
Wouldn't it be funny if we all acted like toddlers and our friends still loved us? The world would be so different. All of us, acting irrationally, childish, innocent and naïve. If we all acted like toddlers.....just think about it.
It's 5:30am and Brinley yells "Mommy, daddy, potty." We jump up, hearts are pounding and realize that the house is not burning down.
I still love you.
A friend is sleeping over, "Krista, James, potty." We jump up, hearts pounding, toss you your jacket and kick you out of the house.
I don't have to love you.
We make our way downstairs for breakfast, I make you oatmeal, you refuse to eat it. I make you two others delicious and nutritious meals and you ignore me.
I still love you.
I'm excited to make my friend breakfast, it's going to be good. You refuse to eat your scrambled eggs. I make you two others meals and you stare at me with a look of confusion. I toss you your jacket and kick you out of the house.
I don't have to love you.
It's time to get ready. I am looking all over for you. We are working on potty training; I find you in the closet taking a poop.
I still love you.
We are hanging out, watching movies and you head to my closet, open it, close it halfway, crouch down and take a big poop. I toss you your jacket, but first, I rub your nose in it and kick you out of the house.
I don't have to love you.
It's time to get dressed. I pick out something beautiful, just for you. You turn it into a wrestling match, I try to sit on you, pin you down, sweet talk you, offer candy. You kick, you scream.
I still love you.
We are getting ready to go out, it's girls' night. I lend you an outfit, you ask me if I can dress you. This is just weird and uncomfortable. I toss you your jacket and kick you out of the house.
I don't have to love you.
We are at Target, you decide to roll around on the floor, you kick, you scream, you pull random items off of the shelves. You open up packages and start eating the food. You yell 3 year old obscenities at me.
I still love you.
We are at Target, you decide to roll around on the floor, you kick, you scream, you pull random items off of the shelves. You open up packages and start eating the food. You yell 38 years old obscenities at me. I slowly back away from the cart and run as fast as I can out the door.
I don't have to love you.
We are at a school celebration, you start undressing yourself. I am wondering where this behaviour came from. Your father? It doesn't matter what I say, you want to be naked.
I still love you.
We are out at a school mass, you start undressing yourself............
Handing you a jacket would be useless. I pretend that I don't know you.
I don't have to love you.
We are driving home from the zoo, you are moody and tired. You yell that you want your DVD player turned on, you yell that you want a juice box, you kick the seat.
I still love you.
We are driving home from the mall, you are moody and tired. You yell that you want the DVD player turned on, you yell that you want a juice box, you kick the seat. I'm thinking WTF?!?!? This girl is whacked. I toss you your jacket and kick you out of the car, while it's still moving.
I don't have to love you.
It's bed time and you refuse to go on the potty, you want the IPad, you won't read books, you will only wear your Minnie Mouse dress to bed.
I still love you.
We are out at a hotel, just getting away, you refuse to go to the bathroom before bed ;), you want the IPad, you won't read a good night story and you will only wear your super hero costume to bed.....with me. I feel a little weirded out, worry about my safety, try to giggle about it and go sleep on the couch.
I don't have to love you.
The amount of stress, worry, tears and heartache that children cause their parents, but we still love you. It's truly the craziest thing. You spend all day and night with your children and they do so many things that drive you nuts, but you love them. You forgive. You move on. You love unconditionally. The commitment that it takes, the hours and the patience. How do we do it? Seriously parents, give yourself a pat on the back, stop being so hard on yourself, be proud that you made it through another day. You are a champion, a hero, an amazing person. Good lord, this parenting thing is the hardest job in the whole world.
9 February 2015
There's Gonna Be A Smack Down!
Well, I took the plunge and attended my first WWE event. (http://www.wwe.com) James has always enjoyed wrestling and when he was younger, he had the opportunity to take in some events. We took our nephews and were hoping that it wasn’t too rough or out of control for the boys.
When
we walked into the Saddledome, the first thing that we noticed was that it was
quieter, it seemed as though it would be a more intimate event, which in turn
made it more family friendly. There was lots of excitement and a buzz in the
air. We got our hot dogs and slurpees and sat down, waiting for the announcer
to introduce the first set of wrestlers.
The
crowd went wild. People really get into this wrestling stuff! I looked around
and saw kids of all ages, spending quality time with their dads, uncles and
grandfathers. There were smiles and laughter, people rose to their feet. Our
nephews were full of anticipation and enjoying their first WWE Live Event.
WWE
is a PG family friendly brand with a strong appeal to boys
ages 2-17. The brand is multi-generational as their shows have been around for
over 30 years and as such are very much a family co-viewing experience. I was
concerned about the language and whether or not the boys would be subjected to
a bunch of wrestlers who took it overboard. There was no need for concern.
There was no swearing. There was no inappropriate language used. I have to
admit, I was a bit surprised. It was a time for laughter and getting into a
wrestling event that the boys would remember for a long time to come.
The event lasted a few hours, which in my opinion, the WWE offers the best value in
entertainment, with tickets starting at $20. With the price of concert tickets
on the rise, this was an affordable and engaging afternoon for the whole
family.
Since having Adele in our
lives, we are more aware and look for events that support community outreach
programs [https://community.wwe.com/]. It’s important to our whole family that we
become involved with those who provide activities and mentorship to our
children.
Knowing that the WWE is committed to helping our youth and getting involved with our children, this has reassured our family that we can trust their values, policies and beliefs.
An outstanding company with superior and exceptional morals. Yes, I just said that about the WWE. It’s funny how we all have this preconceived notion of what wrestling entails, then you attend a show and read up on the company and you are blown away by their principles and standards.
The only downfall was when the girls’ dad got home, he whipped out his wrestling moves (which could use some serious work), on all of us. Thank the lord he didn’t buy any tight fitting garments while at the event. The thought of James wearing some lightening patterned speedos in our living room, would make anybody shutter in fear. J
This post was brought to you by WWE, however, the two live images and opinions are my own. For more information please visit http://www.wwe.com
7 February 2015
Shame on Dad?
Well, the articles have gone viral, everybody throws in their opinions and the attacks on the mom are wicked and cruel.
I always jump on board when it comes to ignorance surrounding Down syndrome. I automatically assume that what the media is telling me, is accurate and truthful. I have learnt from past experience that the media twists and turns the stories to make them more attractive to readers and viewers.
After reading numerous articles, I decided to sit back and think about both sides, what was going on in mom's head and how dad was feeling at the time that he was told that he would be raising his son on his own.
Today, mom hits back at father's claims and denies the allegations.
The world has attacked this mom on social media sites all around the world, meanwhile, we have only read and watched dad's side of the story. I have to admit, mom really didn't make herself sound that much better in her article, but at least she came forward to share her version.
This is how I see it.....
We have all given dad this big pat on the back for keeping his son. Wow, a father who wants to keep his newborn son, who has been diagnosed with Down syndrome. He is a saint. What a stand up kind of guy. He deserves a medal for wanting to actually raise this boy who will be a lot more work than a 'typical' child. Why are we doing this? Why are we giving him so much praise and support when he is doing what he should be doing. Nobody ever said to James that he was an amazing father for staying with me after we gave birth to Adele. Nobody patted him on the back or whispered in his ear that they were floored that he stayed and that he didn't go running.
He is Adele's daddy and Brinley's daddy. He has a job to do, which is to take care of his wife and children. We all take care of each other.
The other thing, I was taken aback that a Go Fund Me page was set up so quickly. Where was my fundraising page? Nobody stepped up and said "it's going to be work Krista, here is some money." In 11 days, he has raised almost half a million dollars. Now, Samuel promises to give back to orphanages and to help those with disabilities, so that they have a more promising future. This is not how the world works. What is happening? Mom gives birth to baby with Down syndrome. Mom runs. Dad sets up Go Fund Me page. Dad makes a whack of money.
Little Leo has Down syndrome. Why is the world treating him like he has a life threatening disease? The world sees Down syndrome as something so horrible, so much more work, that the only way that dad will make it through this, is if we all donate money and bash mom.
If Samuel has plans on moving back to Auckland, he needs to contact his local Down syndrome chapter, find out about services and resources in the community. He is Leo's dad. This is what a parent does, they take care of their child, they love their child and they do whatever is possible to ensure the health and safety of the child.
The mother.....
After reading numerous articles, I have come up with one conclusion, mom is uneducated when it comes to Down syndrome. The doctors provided her with such a grim picture. They felt sorry for her and gave her the option to run. They didn't walk into her room and congratulate her, they didn't give her a hug and tell her that it would all be ok and that they would provide her with the necessary supports. They made Down syndrome sound like it was a curse, it will ruin her life and that the future would be dismal and full of upset.
What would I have done? I don't know to be honest. Those first words are the most important words that a mother will hear. Those first words that come out of the doctor's mouth, sets the tone for how a family will proceed; with confidence or with fear and worry.
Why is this happening in our world today? There have been huge advancements in medicine and technology, why can we not fix this? Why are doctors not educated on how to deliver the news that a new baby has Down syndrome? Why is there still so much shame and ignorance surrounding Down syndrome? There needs to be a shift and it needs to happen right away. I feel sorry for Ruzan Badalyan. She was robbed of the excitement and joy of having a brand new baby. How wrong. I blame the doctors and the nurses. I blame them for not doing their jobs properly. They should be ashamed. I also put blame on the mother for not seeking support, for not wanting to be educated.
None of us know the real story. None of us know if the marriage was falling apart long before the arrival of this beautiful miracle. Instead of criticizing and spitting venom at this mom, let's spread awareness and continue to educate the world. Let's change how the news is delivered. Let's jump on board together and show others that this journey is beautiful. This journey is rewarding and full of blessings and joy.
A sweet little miracle named Leo was born.
The littlest feet make the biggest footprints in our hearts. (unknown)
3 February 2015
Talking To Your Child About Down Syndrome
Recently, a few friends have asked me how they should explain Down syndrome to their child. This is only my opinion, it may not work for everybody and not everybody will agree. I am very open to discussion and love when others come up and talk to us about Adele.
When I explain Down syndrome to younger children, I try to keep it fairly simple.
Down syndrome is not a disease. You can not catch it. It is a chromosomal condition.
We have 46 chromosomes...they make up who we are as people. Mommy and daddy both 'give' us chromosomes, we get 23 from mom and 23 from dad. These chromosomes decide how we develop and grow, how we act, if we will look like mom or dad. When talking to your child about Down syndrome, some won't understand your explanation on chromosomes and that is ok, it's not the most important part about Down syndrome. :)
Adele has 47 chromosomes. This one extra chromosome gives her some extra special gifts.
Her eyes are almond shaped, her nose bridge is flatter, her ears are smaller and lower-set, her mouth is shaped differently, her tongue is a bit bigger, she has a smaller mouth and her palette is shaped differently, this affects her speech. It might be harder to understand her not because she doesn't know how to talk but because she lacks some muscle strength and the inside of her mouth is shaped differently. She will do all of the same things that you do, but it's going to take her a little longer....sitting up, crawling and walking. Because of her extra chromosome, she is a bit floppy, like a rag doll, so crawling and standing are a little more difficult, but she'll get there. She needs to work on getting stronger, we do this with the help of some really great people. Adele does some special exercises that help with her strength and her speech. When you go skiing, or play really hard or have a big long game of hockey or soccer, sometimes your muscles feel a bit weak and you feel kind of floppy, this is how it is for Adele, every day. She just needs some time.
She will love the same music as you and will like sports and gymnastics, just like you.
She has feelings, just like you and she will love playing with her friends and laughing at silly jokes. Having the extra chromosome, doesn't make her any less of a person, she's just like you, she just has to work a little bit harder at some things. Some school subjects might be a bit more difficult for her to catch on to and some will be a little easier. Maybe math will be harder for her to understand because the numbers might be confusing, but she may write really great stories in Language Arts class.
It's ok to look, I do too and it's ok to ask questions. I like it when you come up to me and ask questions about Adele. It's important to ask when you don't understand something, we do this in school all of the time. When you are confused or you need more clarification, you ask your teacher for help. This is how I feel when it comes to Adele, just ask me. I will answer your questions and hopefully help you to understand why Adele has some extra special gifts and how they affect her day to day life. Always remember that different is beautiful. We were all made to not look like each other. We are all unique. If we all looked identical or if we all liked the same subjects and played the same sports, life would be boring.
Children and adults with Down syndrome are just like you and me. We are all beautiful, we all have our own gifts, talents, weaknesses and strengths.
Be kind to each other. Be a good friend. Include others.
*** If you are in the Calgary area, this is going to be an awesome event! I'll be there! :)
I made this brochure last year for World Down Syndrome Day. I'm sorry that it cuts into the side bar if you are viewing on your laptop. I needed to make it big enough. :)
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