Showing posts with label 31 for 21. Show all posts
Showing posts with label 31 for 21. Show all posts

Friday, 5 October 2012

Daycare Handout.

When I let the daycare know that October was Ds Awareness Month, the director asked me to make a handout. So, here it is. In case you want to use it. Or in case you yourself wanted some information.




Hello friends!
October is Breast Cancer Awareness Month, but it is also Down Syndrome Awareness Month. You may not know me, but my name is Everleigh Gilbert and I have Down syndrome. My mom made up this little fact sheet for you! I am currently in the infant room, but should be moving up to the toddler room soon.
 
·        -Down syndrome is medically called Trisomy 21. It is a third copy of the 21st chromosome. Although the chances of having a child with Down syndrome increases with maternal age, 80% of people with Down syndrome are born to mothers under 35
·        -John Langdon Down was the man who characterized the condition, but he did not have Down Syndrome, and therefore there is no apostrophe in the name (such as Parkinson’s or Lou Gehrig’s Disease)
·        -There are 3 types of Down syndrome; non-disjunction, mosaic, and translocation.
·        Mosaic and translocation are more “rare” and can be genetically passed down. Non-disjunction is the most common kind and does not have a genetic link. 90% of people with Ds have non-disjunction, just like me!
·        -People with Down syndrome are more alike than different.
o   We like to run and play.
o   We like to colour and read.
o   We like to sing, dance, jump etc.
o   We can attend and graduate from high school and college.
o   We can have a successful career.
o   We can fall in love and get married.
·        -People with Ds can do most (if not all) the same things you can do, it just may take them a little longer to do things like sit up, walk, talk, write, read etc. They will learn to do it on their own time.
·        -People with Ds have a higher probability of being born with heart defects, gastrointestinal problems, eye problems etc. But with advancing medical care, we are able to live almost as long as a typical person.
·        -Fundraising efforts called Buddy Walks are held all over the world, and all monies raised go towards the local region where it is held, with a portion going back to the Canadian Down Syndrome Society.
·        -Although the word ‘retarded’ is still used in medical terminology, it is no longer socially acceptable to use as a synonym for stupid, silly, etc.
·        -Spread the Word to End the Word is (www.r-word.org) is a website with an online pledge, and lots of information on how using this word affects people and families dealing with a disability.

Thursday, 4 October 2012

Song of the day

So I've been increasingly obsessed with this song lately. I had heard it years ago and loved it, but I heard it again recently and it just hit a new chord. I'll post the video and lyrics for you.

Lightning crashes, a new mother cries
Her placenta falls to the floor
The angel opens her eyes
The confusion sets in
Before the doctor can even close the door

Lightning crashes, an old mother dies
Her intentions fall to the floor
The angel closes her eyes
The confusion that was hers
Belongs now to the baby down the hall

Oh, I feel it comin' back again
Like a rollin' thunder chasing the wind
Forces pullin' from the centre of the Earth again
I can feel it
Lightning crashes, a new mother cries
This moment she's been waiting for
The angel opens her eyes (Her eyes, her eyes)
Pale blue coloured eyes,
Presents the circle
Puts the glory out to hide, hide

Oh, I feel it comin' back again
Like a rollin' thunder chasing the wind
Forces pullin' from the centre of the Earth again
I can feel it, I can feel it

All right, all right, all right
I can feel it comin' back again
Like a rollin' thunder chasing the wind
Forces pullin' from the centre of the Earth again
I can feel it
I can feel it comin' back again
Like a rollin' thunder chasing the wind
Forces pullin' from the centre of the Earth again
I can feel it
I can feel it comin' back again (Back again)
Like a rollin' thunder chasing the wind
Forces pullin' from the centre of the Earth again (Centre of the Earth)
I can feel it, I can feel it, I can feel it


I know it has been said that this song hits a special place for special needs moms. And it's very true. It defintely sits in my mind all day every day. What an amazing song.

Wednesday, 19 October 2011

31 for 21 - Tuesday Night

I've been slacking. A bad blogger -slaps self on wrist-
But really? I've been working. I sort of jumped into this whole fulltime job thing with both feet and haven't managed to really surface yet. It's been three weeks and I'm still trying to find time to sleep properly, to be awake enough to walk up and down the stairs with Everleigh (and without falling) and to drive her to and from daycare. And drive myself to and from work. It's a losing battle that I'm fighting.

So I am sorry for the sporadic postings lately. I'm trying, I really am. To be honest, I have barely looked at a computer in the last few days. I'm lucky in that I can check my Facebook, Twitter and BBM right from my Blackberry, but I don't have a Blogger app to post from my phone (and I think I need an iPhone for that anyways).

So, I will do my best. Next weekend we are off to Florida for a little R&R/Tristen and Daven's belated birthday trip (they turned 15 on September 27th) so I'm hoping the break will allow me a little time to clear my head and maybe make some posts.

I really want to write a post on the new blood test for Down Syndrome but I keep forgetting about it so....there. It is in black and white on the page so I can't forget. As for right now though? This mama can barely keep her eyes open so....it's bedtime for moi!

Saturday, 15 October 2011

31 to 21 - A new gross motor skill!

Whilst we were at a friend's house today celebrating her littlest (but not for long) monkey's 2nd birthday, Everleigh was calmly enjoying her tummy time. She flipped over to her back (not a new skill around here mind you), so I thought nothing of it. Then, as I'm talking to someone at the party, out of the corner of my eye I see Miss E moving around on the floor. I look down at her just as she is completing her BACK TO FRONT roll!

Okay so my level of excitement was more !!!!!!!!!!!!!!!!!!!! than just !, if we're being honest. And I'm only sad that I didn't get it on camera.

Thursday, 13 October 2011

31 for 21 - Mind Block

I really have nothing new to post about.
Everleigh's reflux hasn't gotten any better really. Sometimes I think "hey she's been pretty good today" and then she hurls all over everything, repeatedly, and I get frustrated and I want to cry. I know it's not her fault. And I know it's not really hurting her, as evidenced by giant smiles from a puke-covered girl, but it really is a very frustrating situation.
I am on the job hunt again. I am NOT happy at Tim Horton's and I dread going in to work every night. An unhappy stressed mama does not make for a happy baby. I have been pointed in the direction of possible waitressing -so it's something to look into anyways. We'll see how that pans out.

November 6, 2011 Everleigh and I will be participating in our first ever Buddy Walk in the Waterloo Region. This is pretty exciting for me as the Halton Region doesn't currently have a Buddy Walk (and I'm not in the position at the moment to be able to organize one right now). I'm really just looking forward to being surrounded by people going through the same life we are. To not be alone for just a little bit. Everyone I've spoken to who has been to one says they are amazing shows of solidarity and support. We are excited.

Well, that's it for now. As always, if you have questions or suggestions for a future topic, feel free to email me at amanda.gilbert17@gmail.com

Wednesday, 12 October 2011

31 for 21 - Reflux

Well, it seems that the bug that Everleigh picked up from daycare last week made a reflux problem come to light. I've always had some small part of me that thought she had reflux but as it never caused an issue, I never thought too much on it. Well she's gotten over the bug from daycare and is still having issues keeping feeds down so I had my mom take her in to the pediatrician this morning...lo and behold he thinks she has reflux too.

So we have switched from Enfamil A+ to Enfamil A+ Thickened and so far today she's kept all her feeds down (YAY). I also have some mediciation if the reflux starts to come back again, but I'd like to keep her off medicine if at all possible.

The Developmental Consultant and Everleigh's new OT came today...but seeing as how I'm running late to get ready for work, that update will have to wait.

Tuesday, 11 October 2011

31 for 21 - A new milestone

Rice cereal has landed in our house!
Contemplating this new feeling in my mouth

Hmmm....

Grandma, I like it!!

Can I have some more??

Yeah..I almost finished the whole bowl...oink oink!

Monday, 10 October 2011

31 for 21 - What I'm Thankful For.

Okay so there are the normals: Family, friends, health, love, a roof over my head, food in my belly, my daughter etc.
But above all else, I am thankful for the people in my life who tell me and encourage me each day to never give up.

There have been many times, especially in the last year, where I just felt like lying down and giving up. But what would that have accomplished? I am stronger than that, I know I am. Sometimes I get tired of standing on my own two feet. And just when it seems to become too much to bear, someone in my life steps up and tells me that "it's okay. Lean on me. We'll get there together". This isn't a post about Down Syndrome today. This is a post about life. Above a lot of things - I am thankful for the life I have been given. For the knowledge that I didn't have a lot of things in my life handed to me - that working for what I wanted has shaped me into the person I am today. That the morals and values handed down from my parents to me are things that I am proud to pass on to my daughter. That I have friends in my life I can go to no matter what. No matter our past circumstances, past fights, words that have been exchanged. They still love me for me (and perhaps because I have such a cutie for a daughter :p)

Because really, nobody can make it in life completely alone. There is always going to be a time when you need someone else's shoulder to lean on, their ears to listen, their hearts to share the burden. And that is what I'm thankful for.

Sunday, 9 October 2011

31 for 21 - Happy Thanksgiving!

Sorry this is so late and will be so sparse in content - but Everleigh and I are now battling a bug. Well, she battled it and has seemed to have won - but now Momma's caught it and so I'm feeling completely under the weather.

I just wanted to tap this out before I fall into bed and succumb to sleep - chills and nausea just aren't my friends tonight! And this is the first holiday I've been really sick and unable to eat. I missed turkey and that makes me sad.

I am planning tomorrow to post on what I am thankful for in honor of (Canadian) Thanksgiving. Stay tuned :)

Saturday, 8 October 2011

31 for 21 - Welcome to Holland

Once Everleigh was born, I had people from all over telling me to read a poem entitled "Welcome to Holland". Only, since I'm not really much of a poetry person, I never got around to it. Well, just recently, I decided to sit down and read it. Originally written for autism, it seems to pertain to raising a child with any sort of special need/disability. Here it is for you to read along with me:


I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. 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, 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." The pain of that will never, ever, go away, because the loss of that dream is a 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.

Written by Emily Perl Kingsley

And it really is so true. Okay, so I really did have to mourn the 'loss' of the baby I thought I was going to have (a boy. His name was going to be Noah. I was convinced), a baby who was 'perfect' and had nothing wrong with them. That was my Italy. But instead, I ended up in Holland. With a little girl, Everleigh. 10 fingers, 10 toes, 2 eyes and ears etc. She's got all the bits and pieces she's supposed to. AND, she has a little bit extra. That third copy of the 21st chromosome. You know what? I was so upset that I ended up in Holland when I was expecting Italy, that I never stopped until recently to realize that there is nothing wrong with Holland. There are similarities, there are differences. But the most important part is that they are both geographical locations. That is the most important similarity of all.
Everleigh may not be "typical". She has 47 chromosomes instead of 46. She may have to work a little harder to achieve the same milestones that other kids do. But she'll get there. And really, what difference does the journey matter when the end result is the same?

Tuesday, 4 October 2011

31 for 21 - Day 4

Again, another day with nothing really decent to post. I think it's because I'm SO exhausted from work last night. Not only have I not had to work since February of this year, but I haven't done overnights in almost a year and therefore my body is kinda "wtf"ing me right now. My knees hurt, my back hurts, and I'm pretty sure trying to get back into the habit of sleeping during the day is hard when you know your daughter is at daycare. I called to check up on her today (something I said I wouldn't do) and as usual, she was doing great. Way to go momma, what were you worrying for?

Auntie Winter came over the other day to take some pictures of Everleigh...and out of all the ones she took, this is my favourite:
I absolutely HATE pictures of me (my brain is going "holy fuck, you have huge arms. Lose some weight, do some toning, you're disgusting) but I love it nonetheless. I don't have many "artsy" pictures of Ev and I, so this one does well.
This is my other favourite:




It's hard to believe she's come from this:
To this:
In only a few short months. My heart, it's overflowing.

Monday, 3 October 2011

31 for 21 - Day 3

I don't have anything mind-blowing to post right now. Everleigh is at daycare for her first day today, and this momma? Well I tidied up our room, folded and put away laundry and now I'm going to crawl into bed and try to get some sleep! (I start overnights tonight. Hopefully it goes well!)
I'll leave you with some snapshots of beauty:
Sleeping on the couch

Saturday, 1 October 2011

31 for 21

So today is the beginning of 31 for 21 - Down Syndrome Awareness Month.
I had a couple ideas for what to write earlier in the day and now I can't remember what they are.

Down Syndrome is the chromosomal abnormality characterized by an extra copy of the 21st chromosome. Hence the term, Trisomy 21. "Normal" people have two copies...one from mom and one from dad. 1 in 691 babies are born with this syndrome...so I guess that makes me pretty special for being blessed with Everleigh! And while at first I was afraid of the unknown, I'm slowly becoming much more accustomed as I learn all the different things she WILL do. We are more alike than different after all!
I leave you with a video that a mom of twin T21 angel boys made:

Friday, 30 September 2011

5 Months

Happy 5 month birthday, baby girl. You are so loved.
12lbs 9oz is what you weighed in at today. So you're gaining, slowly but surely. What more can I really ask for? You're small for your age, but this momma doesn't even care.

Tomorrow kicks off October. Which is Down Syndrome Awareness Month. This year I'm going to be participating in 31 for 21..which is basically 31 days of blogging to raise awareness for, you got it, T21 or Down Syndrome. Not every post has to be about Ds, but I feel that it should be. I will do my best.

I'm happy to report that Everleigh seems to be growing and learning every day. For a little while there, I was worried because she wasn't batting at toys like she had been. But then she busted out this new skill of holding her head up and sitting with assistance, and the batting at toys has resumed. So I think it's safe to say that if this Mama sees a decline in one skill, you can bet there's another (even better) skill lurking somewhere beneath the surface just waiting to make an appearance. Nothing to worry about. Easy peasy.

As soon as munchkin wakes up from her nap, we've gotta go on an outing to bring the car in to see the guy we bought it from...the brakes failed the other day (scary shit, I must add). Pulling out of the daycare parking lot on to the main road and I suddenly realized my foot (and the brake pedal) were to the floor and the car wasn't stopping! There is (or was) a giant leak of brake fluid from the rear driver's side so I've got to see what's going on. If it's a hole in the brake line, cool, I can fix or patch that. But if it's in the wheel cylinder, then I'm a little lost.
Kinda like I feel I just lost a couple of you guys. I know not everyone is as car savvy as I am. Guess I was blessed to grow up in a household where my parents (and most of my entire family) all work in the auto industry.

Well, I'm off like a dirty shirt (for now) but you can bet I'll be back soon!