Showing posts with label Down Syndrome. Show all posts
Showing posts with label Down Syndrome. Show all posts

Thursday, October 18, 2012

Invisible, Special, and Pride

There are a few things that I do worry about with Macy... Some may come as a shock, some may not.

These aren't the typical worries. Because of my beliefs, I know without a double that Macy's future is bright!
I know that she she will struggle in life as she grows and I will have to watch her closely and protect her, but these are some of the things I worry most about.


Macy becoming Invisible-

I am sure you have all seen an adult with Down Syndrome as you go about your lives. On many of those occasions, people keep their distance. They make wide distance between themselves and that individual. Or they simply ignore them. I have never had a single negative comment about Macy, but she is still young and cute and charismatic! She is a charmer. I fear that as she grows older and into adulthood, she will slowly become "that lady with Down Syndrome" or simply "invisible, ignored, shunned to the side."



Treated "Special"-

Out of compassion and doing what they think is best, many people think those with special needs need to be treated "special." I feel like everyone is special no matter who they are and everyone deserves to be treated the same. I don't want people to allow Macy to get away with behaviors that typical people can't get away with. I know through her life things will need to be altered slightly for her. She will need extra help, modified programs and such. But, I also want her to view herself as an equal to her peers. She should not be given special treatment.



Not know who she is or be proud of that -

Macy has Down Syndrome. That is part of who she is. I get so frustrated when parents don't want to tell their child that they have Down Syndrome. Are you ashamed? I'm not. Why does Down Syndrome have to be such a negative thing? How do you think it impacts your child when you are ashamed? I am proud of who Macy is and I am well aware that Down Syndrome is part of who she is. If she didn't have that extra Chromosome, she would be different than she is. I like her the way she is. So as she grows I hope to instill a sense of pride in her. She should be proud to say she has Down Syndrome. She should be proud of who she is. I am proud of who she is and so is her Heavenly Father.

 So I encourage everyone who reads this to notice those around you with special needs. Say hi, treat them like you would treat anyone, give a hand where needed, start a conversation and mostly allow them to feel proud of themselves!!!

Wednesday, October 17, 2012

Macy

A video for Down Syndrome Awareness Month!!! 

Macy, you are DOWN right AWESOME!!!!

Monday, October 1, 2012

October is...

Down Syndrome Awareness Month!!!

Even though Down Syndrome will forever be a part of our lives, it is something that I don't think too much about anymore. I don't worry about Macy's future. I just have a peaceful feeling that it will all work out! I don't worry about her not being noticed or accepted. In fact, sometimes I worry more that she steals the spotlight too much!! So, for Down Syndrome awareness, I just want to say this one thing. 

"Having Down Syndrome is no big deal!!! 
How you perceive it, deal with it, embrace it and accept it... IS everything!!!" 

Look how far we have come!!!

 3 weeks old (Above)
2 1/2 yrs old!

Monday, January 30, 2012

A friend has read my mind

Have you ever read something and it connected so gracefully to your own thoughts, that it is almost as if this person READ your thoughts?? 
That is what happened when I read this today, and I had to share. 
Written by a friend of mine and Macys who has recently moved away from us and settled in Cambridge, England. 
Her words are so eloquent. 
I could not have said it better... Click below!




Monday, January 16, 2012

Macy's 3rd Surgery

It is common among people with Down Syndrome to have hearing problems. That is a large part of the reason why many of them have difficulty communicating well. If you have ever heard a deaf person speak, they don't pronunciate their words as well. If you can't hear the correct pronunciation, you have a harder time repeating it.

Well, somehow Macy got overlooked in the beginning and never got her initial hearing test. Then when she finally got in around 8 months old, they found she has fluid behind her ears (to her it sounded like she was under water) and therefor she needed tubes to drain the water. She got those tubes last January.


Since than she has had multiple hearing tests. At some of them they thought she would need hearing aids, then some of the tests would be better. I really think it is hard to get a good result with an awake baby who could care less that she was being tested and didn't really cooperate. But, the testing continued, and I was okay with that. She has always been a chatter box and she has always responded to her name and acted like she could hear us. so I was just going with what the doctors wanted with little concern.


Eventually we got in to the Opthomologist again and she was stunned with how much wax Macy had produced, which surprised me because I never see wax in her ears. I guess it is a really sticky type that has completely blocked her ear tubes. Thus the failed tests! Though, we still know she can hear and she is doing great at her speech therapy appts.

Still, tomorrow she gets a new set of ear tubes, and though I am not supper nervous, there are still risks with every surgery! I am hoping that everything runs smoothly and that her new tubes stay nice and open! Unlucky for us, we have to be at the hospital at 6 am. I guess that means less time to wait for her to be done tomorrow! I'll be glad when I get to go see her in recovery and hug her and love on her!!

Monday, June 20, 2011

The joys of June...

This has been a busy and exciting month. Here are a few of the things we enjoyed!!

Another trip to Montana. Always so relaxing and fun!

This is why they call it BIG SKY!! Waking up to this and relaxing with the afternoon sunsets is probably my favorite part of it all!


 
 Took the kids to the Vortex and House of Mystery. Pretty wild! Because of the vortex, the trees grow crooked. It's pretty cool to see, wish I would have taken pictures of the trees.





Last weekend we walked in support of Macy and raised money for Ups and Downs. Thanks to all our friends and relatives, we raises $3,440.00 to give to Ups and Downs!!! It was a really fun event!!


 The walk of fame!!!
 Macy's friend Gage and his amazing Firetruck wagon! This team won the team spirit trophy. I think it is cool because Gage was delivered at birth by firefighters and had his first birthday at the fire station, so this was perfect!

Tommy played baseball again this year and really loved it! He took last year off so I wasn't sure if he would want to play this year. Well he did and every day after school he wanted to practice!
Isn't he so cute! His favorite position is Back Catcher.

 Some highlights from his baseball season...

Pitching the last inning against the #1 team in the league and striking them OUT!! We beat them!
Preventing a runner from stealing home and gettin him out while playing as back catcher.
Beating another one of the top teams by 8 points!
Hitting it out of the park!!
Playing with his best friend Carter!!



 Looking forward to July with Young Womens Camp, and a family reunion!!

Tuesday, April 26, 2011

Work it girl!

It seems like the majority of my life is consumed with therapy right now. Which is actually quite fun and entertaining! I love that I get so much time alone with Macy to watch her learn and grow.

Though I do feel bad that I never take photos of her at therapy... until last week :)

I finally remembered the ol' camera... and wasn't I proud!

Macy has done a huge jump in her abilities over the last few months. She is army crawling (almost full crawling) Pulls herself up to stand with minimal support and stands alone for long periods of time. She has started imitating me at times and is babbling more!

Here is a sneak peek of Macy at therapy with her amazing physical therapist Anita... more to come I hope!

Tuesday, April 12, 2011

Go team go!!!

To my fellow Kareen cheerleaders...

The Cox family has an appt in May with the government in Kareens country. So I believe they are headed to meet her on the 14th on May. SO EXCITING!!! I hope you are all following their progress. If you helped me raise funds for them than you get to experience the joy right along with them! You helped bring this little girl home!!!

Follow at http://kareensjourneyhome.blogspot.com/

Monday, March 21, 2011

Grateful

My heart is full today. But, my heart is also heavy.

Today is world Down Syndrome Awareness day. 3/21 because Macy has 3 of her 21st chromosome. I was hoping to throw a party with good friends. I was hoping to have cake and laughter and balloons with messages of Love, Acceptance and Understanding written in them.

But, sometimes life goes in its own direction. We have all been sick, for weeks it seems. So the parties will have to wait for another year.

But I want to take a minute...

For all those babies not given a chance. (and now the tears are coming)
For children that are told, "You are not good enough for our family."
For the gifts given that were not received.
For the fear of the unknown or imperfect.

I want to keep those thoughts very fresh today. So that I appreciate more and love deeper.
But I also want there to be lots of joy today!

Joy for those parents brave enough to face the obstacle and break down the barriers.
Joy for everyone in my life who loves Macy, who has wanted to hold her and enjoy her.
Joy for friends who without know it, have given me backbone!
To one friend in particular... that walked the path before me. She did it with grace and gave me the courage to know that it is a beautiful thing to raise a child with Down Syndrome.
Joy for a Heavenly Father who knew the world needed people with Down Syndrome. They have a spot here too and we can learn so much from them!

Mostly Joy for Macy... this little girl who has been placed in my care. Who the Lord has trusted me with. To love her, unconditionally. To teach her and let her teach me. I am so grateful!

Wednesday, March 16, 2011

Give Baby! It feels good!

If you have followed my blog, you are well aware of the hard year my daughter Macy has had. I fear this is just the beginning for her. Yes, she is a happy baby and very much loved. But, she has to work so much harder for everything and she is not in the clear with her medical problems yet. So many of her little friends go through similar journeys and it is important to me that these children are given every opportunity for a full and happy life!

We have decided as a family to walk in the Street Meet 2011 sponsoring Ups and Downs (The Calgary Down Syndrome Association.) They are a great organization that does more for their members than any other support group type charity in Calgary. A few of the things they do...
-Wonder Years Conference - for parents to learn how to give their child with Down Syndrome the best chance at life!
-Cooking classes, Dances, Young Adult Conferences, Socials and much more for Teens and Adults with Down Syndrome.
-They offer a huge resource library with learning DVD's, Books, Toys etc. To help our children reach their full potental.
-They offer grants for parents to travel to larger conferences if they don't have the funds.


This is only a small portion of what they give back! They are a great organization and we are hoping to raise $2,500.00 this year to give them. To spondor Macy click here. Thanks Everyone!


Saturday, February 12, 2011

Passionate!

Do you have children? Hug them tight, tell them you love them. and...

Be grateful that God's plan was to put them in your family, instead of a family that didn't want them.

I will not stop fighting, I will not stop advocating, I will not turn my back because it is easier!

Over the past year I have felt this strong pull. There is something needed of me in the Down Syndrome Community.

*Whether it is to help raise money for families to adopt or whether it is to adopt myself.
*Whether it is to raise awareness to decrease the 90% abortion rate or to increase love and acceptance of people living with Down Syndrome.
*Whether it is to be a face in my local community, to increase quality of life for families and children with DS or whether it is to spread my love and knowledge past my community.

I don't yet know what I'm wanted for, maybe a little of all of these things... But I will not stop searching and doing what I can. I will volunteer in my community, I will donate money, I will be a voice for others and I will spread awareness!

A few years ago one woman had that same pull. So she created Reece's Rainbow. Because of her... in the last 5 years 400+ children with Down Syndrome have been adopted out of orphanages! She is just one woman, a mother, filled with love and a desire to do more!

All children deserve a loving home! and yes, your small donation DOES make a difference!!!

Do something HERE!!

Friday, January 14, 2011

Give a little LOVE!



Thanks to fellow blogger Kelle Hampton for all you do!!!


and Donate!

Monday, December 6, 2010

Our time is up!

Our week with the Trisomy 21 afghan is over, but we gave it some love and we're sending it on it's way.
The timing could not have been better... since in a few days we are off.






Off to california to enjoy some time with friends



Off to california to warm up our frozen bodies



and Off to california for a much needed break!

Tuesday, November 30, 2010

What are we up to???

I was lucky enough to enjoy a day at a Down Syndrome Conference this weekend.
The Wonder Years Conference
put on by Ups and Downs

There were many great speakers and I learned so much. One of the best things I learned was that Calgary has more resources for a child with Down Syndrome than anywhere else in Canada. Hallelujah for living in Calgary! A friend of mine summed up the conference on her blog if your interested. You can fine that HERE.

In other great news! We were the proud recipients this week of the T21 Traveling Afghan. It is an Afghan that has been traveling the world, visiting families who have a child with Down Syndrome. We get it for a week and than we send it off to the next family. Along with pictures and a journal entry of our time with it! How cool is that? To have an amazing connection with people all over the globe because of one thing... AN AMAZING EXTRA CHROMOSOME!!!

Pictures to come!

Tuesday, November 23, 2010

A wonderful day!

Today is a fabulous day for Macy and Me!!
Macy was born with problems with her colon (Hirschsprungs disease)and had 1/3 of her large intestine removed at 3 weeks old. They were able to successfully attach the rest of the colon to her bum hole. Therefor she is able to poop normally. Yeah for that!

The down side.

Since that surgery (for 8 1/2 months now) I have had to dilate her bum hole once a day. This is to prevent the scar tissue from closing up her bum hole. I was going to post a picture of a dilator... but I didn't want to scare anyone. It's a metal probe that I have to put 2 inches up her bum everyday (just a quick in and out). Every few months the surgeon increases the diameter to further stretch the scar tissue. Obviously Macy hates it... wouldn't you! and I hate doing it to her.

Well, we had an appt with her surgeon today, we thought we were going to increase size again, but he said... She no longer needs the dilator!!! YES YES YES!!

Give me a minute to do my little happy dance!!!!

Monday, November 15, 2010

In all honesty...

I really do want to say something witty. I'd love to help you start your week off with a good laugh. Hey, I'd even love to inspire you today. But you know what?

I'm just not feeling it! Everyone is entitled to their moments, right!?

I was feeling it at one point this morning. That was around 7 am as I stepped up to the admitting desk at the Children's Hospital to check Macy in for her surgery (ear tubes). *note- this is the third time it has been scheduled.

Well, my bubble was burst when I was told that Macy's surgery was being postponed. This was after dealing with a hungry baby all night who could not be fed (because of the upcoming surgery), getting up at the crack of - well, no it was way earlier than dawn! And after changing her into her surgery clothes and even after they gave her a dose of medication to prep her.

Macy showed up with a bit of a cough, I can understand a little concern. But let me remind you we live in Alberta where is is extremely dry. She wakes every morning with nasal congestion. But this being an early morning, I didn't get the chance to syringe her nose. Well 2 nurses listen to her chest and said she was clear and it would be fine. Then a resident comes in and listens to her and says (in broken English) "oh, very noisy chest, we cannot do the surgery today." (The thing that makes me the most mad is that the surgeon did not come assess her and neither did the anesthesiologist.) So upset and near tears I leave and take Macy to the doctor.

Well, the doctor was shocked that they didn't do her procedure. She said Macy had a mild cold, but her chest was clear and she was in no respiratory distress. This surgery is an easy 5 min procedure.

Why am I mad?

- She will probably have to wait till January now when she should have had them done in September.
- I feel that I am at the hospital often enough and don't like going there for nothing!
- and a few other reasons that I will kindly keep to myself :)

K, I'm climbing off my soap box now!

Monday, October 25, 2010

Italy is overrated anyway!

For those who wonder what it may be like to raise a child with Down Syndrome.
Here is a little poem.
Welcome to Holland
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Emily Perl Kingsley
and in my opinion... holland is beautiful these days!!!

Saturday, October 23, 2010

I don't like labels!

Visiting with someone last night and She said,

"I used to work with special needs kids in a school. I had a few that had Down Syndrome. One was so sweet, and then there was another little girl who was a "more typical" down syndrome child. She was really pushy and didn't listen well."

There was more to the conversation and she wasn't trying to say anything bad... but I couldn't help the growing knot in my gut.

Why do we put labels on people? What is typical anyway?

People with Down Syndrome are just as much individuals as anyone else! They are unique and have different personalities.

Friday, October 22, 2010

Eye Candy!

Oh, the cuteness!!!
That extra chromosome sure has a positive effect!
Every family should be blessed by someone with Down Syndrome!

Thursday, October 21, 2010

What's so great about it??

All because of Macy and her Designer Genes, I get to make so many new friends! A handful of these ladies found my blog within days of Macy being born and were such a great support while she was in the hospital. I love having a huge DS family.
Till next time!
(most of their blogs can be found at the bottom right of this page)

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