Friday, 21 March 2014

3:21 2014

On this day, which means so much to our community. To our family and friends. To the hundreds of thousands of people across the globe living with Down syndrome. On this day, I say...
As time continues to fly past us at neck-breaking speeds, as the three-year anniversary of your birth fast approaches, I must say this....
Auntie Amanda rocking her blue/yellow and her funky socks
 I love you EXACTLY as you are. I would not change a single hair on your head. I could never take away your extra chromosome.
Auntie Coco's work reppin' the blue/yellow!

Auntie Coco's funky socks!
If you had asked me this a little bit ago, I would have stumbled over my words trying to get my feelings across. There is a difference between having a child with an intellectual disability and having a retarded child. The medical terminology has changed so much in the past few years - and is continuing to change - and I hope that one day you will be able to live in a world where the word retard is no longer used to describe another human being.

Great-Auntie Kim and Cousin Emily's socks!
In three years you have learned so much. And your journey is uniquely yours. Nobody will learn things exactly as you do. Nobody will ever have your personality. Nobody will ever have your exact mixture of DNA.

People all over the world with Down syndrome may share some of your characteristics, but the extra chromosome manifests itself differently in each one of you...and for that I am thankful. I am thankful that you will always have a community of friends, family, teachers, and acquaintances who are willing to walk your journey with you while appreciating the fact that each step you take is one that can never be duplicated.
Kathy and her awesome socks, and her blue/yellow!

On this day - as people who love someone with Down syndrome share pictures of themselves wearing blue and yellow, wearing funky socks, or both - I am amazed at just how large the network is. People we have never met join with those who are both near and far to us to join in a show of just how much you, Everleigh, are loved.
Kiki and her outfit!

Sarah's Down syndrome bracelet charm
Sarah's socks

Great-Aunt Teresa, Cousin Melissa and Cousin Chris with their socks!

Thursday, 21 November 2013

One Myth, One Truth, One Picture

I've been trying to think of something to write about for a few days now...but seeing as we are coming to the end of the semester, all my free time is taken up with doing homework or doing nothing in an attempt to take a break from school brain. Coming up with a coherent blog post isn't high on that list.

I've seen a blog hop around the Ds community, where you post one myth, one truth, and one picture. since I don't feel like linking up to the hop, I'll just post my three things here.

One Myth
People with Down syndrome are always happy.
HA
Anyone who's ever been around Everleigh can attest to the fact that this is a total myth, plain and simple. Sure, she may be in a better mood more often than some kids, but she is as emotionally diverse as they come. Tantrums are an every day occurance around here, along with sadness, frustration, annoyance, upset, and pretty much any other emotion you can think of.

One Truth
Kids (46 or 47 chromosomes) teach you patience.
Well, this is a truth I'm still in the midst of learning. I had NO patience for anything before Everleigh came along, and the truth is, I still pretty much don't. I want it done now, and if I'm waiting on someone, I'd usually just rather do it myself and get it done. That being said, I have been trying very hard to be more patient with Everleigh (and in general). And while I still don't have a lot of patience for people who are old enough to know better, I am slowly learning that I don't have a choice BUT to be patient with Everleigh. It's hard - her independent streak is becoming more and more apparent - but I'm getting there.

One Picture
....just one? Hmmm...
Cheeeese! (with a mouth full of arrowroot cookie)

Friday, 1 November 2013

Vaccinations

What a touchy topic. I know that every family makes the best decisions for their specific situation. But what I would like to talk about is my side of the story.

For every child that does not get vaccinated, you raise the risk of my child contracting whatever it is you neglected to vaccinate for. For the purposes of this post, I'll pick MMR.

You may be saying "well it's only one kid, that barely even raises the chances". This is true. YOUR family is only one family. But consider, briefly, how many parents do not vaccinate their kids (for religious reasons, personal reasons, what have you), and then consider how many kids are not being vaccinated. If MMR were to have an outbreak, and your child contracts it and manages the illness fine, that's great. But if your child passes it to my child, who has a compromised immune system, it could mean some serious health repercussions. And then my child may not be taken out of daycare fast enough, pass it to another child....well you see where I'm going with this.

Okay. I get it. MMR has been vaccinated against for so long, it won't be making a come back. Same with polio. Pertussis. The other vaccines we pump into our kids. And besides, don't vaccines cause autism?!
No. No they do not. It has been debunked. The doctor that originally made the claim has had his license revoked. Vaccines do not cause autism. And even if they did - I would rather my child become autistic than die or suffer serious ongoing health issues from an illness that could have been prevented.

Warning, the video below is NSFW due to vulgarity. But it perfectly illustrates my point on vaccinations.

 



So, tell me, do you vaccinate your kids? I do realize, again, that it is a personal decision, but I'd like to hear your thoughts! (side note: Any inappropriate comments will be deleted)

Thursday, 31 October 2013

31 for 21 - Day 31

Happy Halloween!

Okay, so I didn't blog all 31 days (actually only 10 days including today). But I tried. And the jist of it is, I have other things I would rather do than blog sometimes. Like spending time with Ev snuggling on the couch, or taking a nap with her, or stringing beads...or just watching her play.

I thought I would try to find some pictures of past Halloweens for you.
2011. First Halloween!
2011. She wasn't crying, it was cold outside!
2012. Ladybug. This was also the theme of her birthday earlier that year

2012.


2013. Little Strawberry :)

2013

2013. Everyone says she looks like me, but I just don't see it!







Tuesday, 29 October 2013

31 for 21 - Day 29

It's been a busy weekend (as usual). I worked Friday and Saturday night 3:18-11:18 pm, then spent Sunday with Everleigh. She went to bed at Grandma's, then I went home to bed myself. I then worked 6:30-2:30pm on Monday. Yawn.

Now, back to school today. I also forgot that today is picture day at the daycare (oops. Good job mom).

I thoroughly enjoyed my week off last week. I didn't do a whole lot, which was most of the beauty of it. It was just nice to bring Everleigh to daycare in the morning, then go back home and do whatever I felt like doing, or nothing at all. I did laundry, dishes, Scentsy, took Ev to the dentist....beautiful and laid back. Just what I needed.

Now, back to the grind. We are now starting week 8 of 13/14. My last classes should be the week of December 9. Here's hoping the last weeks fly by, because I can't wait for December so I can be off for most of the whole month!

Thursday, 24 October 2013

31 for 21 - Day 24

I thought I'd take today to write a little bit about someone very special to me. Sari and her daughter Sydney, live in VA Beach. Sari also has a son, Sam, who is 7 and has Ds and ASD. Sam was removed from his home just over a year ago, and custody was given to his father. There is no rhyme or reason to their story. Somehow, this amazing woman pushes through each day surviving solely on the faith that Sam will come home someday soon and that there has to be a reason, a testing, for all these happenings.

I met Sari online just after Everleigh was born. I do not remember how we met, but looking back now, it doesn't even matter. It doesn't happen often in life, when you meet someone who just fits so perfectly with your situation. Sari is in her 40s, her daughter is 18, and her son is 7. So technically, I should get along better with Sydney than I do with her mom...but the truth is, this woman is just so...SARI...that the age difference does not matter.

Last Christmas (just before actually), I finally decided to fly down to Virginia Beach and meet this woman who I had connected with so well. I was nervous. Nervous about getting off the plane, her not being there, and me realizing a horrible mistake had been made. Nervous about meeting (and living) with someone with autism for a week...because people with autism are SO different from one another, it is impossible to say "this is how they will react to -insert situation here-". Worried about flying with Everleigh, getting through the airports, security, customs etc.

Let me tell you. I got off the airplane in VA Beach, gathered our carry-ons and stroller from the bins/gate, and headed up the runway. I was scanning the crowds for a familliar face, when she saw me, walked over cautiously, and asked if I was Amanda. When I said yes, she wrapped me in this bone-crushing hug that never wanted to end. Seriously, it was like coming home to a loved one you haven't seen in a long time. She then introduced me to Sam, who was fidgeting with his beads, refused to make eye contact, but did say "hi" and then grabbed my hand. My heart melted instantly.

The week was a lot of the kids getting to know eachother, us having heart-felt talks (with tea!) on the couch, some shopping (for me), but mostly just vegging out at her house and just being together. Everleigh and Sam got along very well, as well as a then-6 year old and a 20 month old could. They grew on eachother. Everleigh took her very first steps there (!!). She also came down with a nasty case of something-or-other that landed us in the hospital (thank you travel insurance!).

Shortly after we left, things transpired (it's a long, drawn-out, bullshit story), and Sam was removed from his mother's care and placed with his father. It has been a downhill slide of never-ending lies and deceit on his father's part that keeps Sam with him, even now. Sari has been allotted one visit a week, supervised, which she must pay for (she does not work currently, due to a heart attack brought on by stress from this whole situation). But even then, sometimes she does not see her son. It has been court ordered that she be allowed to Skype with Sam twice a week...she does not get this priviledge, and if she does, it is a rarity. Her ex-husband sits just out of range of the camera, and will cut the call short if he hears anything he doesn't like.

Did I forget to mention that Sam is non-verbal? Part of me wonders if this is why her ex is doing what he is. Because Sam can't speak up and tell us exactly what is happening. Breaks my heart, I tell ya.

Sari has been keeping notes since the beginning of all this (and even before), and not one professional has listened to her. Yet she daily continues to fight for her son. To bring him home, and away from the hurt and sickeness he is enduring with his father. She keeps notes of EVERYTHING she observes when she has her visits with Sam. She makes notes based on his appearance when they Skype. She has doctor's notes showing that Sam is enduring medical neglect because his father refuses to keep appointments that are scheduled for Sam's well-being (he is supposed to see a Cardiologist, a Gastroenterologist, an Ophthalmologist, he is supposed to recieve ABA therapy etc). 

NOBODY PROFESSIONAL WILL LISTEN TO THIS WOMAN'S CRY FOR HELP.

It breaks my heart that these pictures are from the first and last time I saw Sam. I can't imagine what Sari goes through on a daily basis not being able to hold her son. To touch him, smell him, breathe him in. 



Being in Canada, I have no way to help her. She has tried every avenue she knows of to try and end the nightmare, but nothing seems to be working. This beautiful little boy does not see his mother, and it must be slowly killing his mom (and sister) to have him ripped from their lives. Oh, and I forgot to mention that Sydney is not allowed to attend these supervised meetings. Her ex-husband won't allow it (Sydney is not his daughter, but this is beyond the point. Syds is Sam's sister).

At the risk of sounding like a broken record, I will just leave you with this one last picture. Sari has a heart of gold, and I can't imagine anything like this ever happening. It's one of those situations that you hear about in the movies...it's so unbelievable, appalling that this is happening. And that I am powerless to help her.

For anyone who wants to read more about Sari, Sydney, and Sam....Sari keeps a blog over at Normalcy Challenged. She does not update often, but the whole account of this nightmare is. Head on over and read. Send her some love. Find her on FB, Twitter, IG, etc. and just let her know we are all thinking of her. I know I do this daily, but it would be nice to know she has others thinking of her too.