29 June 2014

I See Down syndrome...

We had a busy and fun week! I love busy, I love getting the girls out and having a good time.

I know that summer holidays have just started but I am a planner! I found this link and think that Gillian has some great advice for teachers. It's a great read! Bring this to your child's school. Be pro-active. Be your child's strongest advocate.

10 Things Teachers Should Know About DOWN SYNDROME

Things are going pretty well right now. Adele's health has been great and she is getting bigger and stronger each and every day. We have another vision appointment next month and I'm pretty sure that she will need glasses. Her right eye crosses a lot and could use some strengthening. I'm ok with glasses, that is minor and besides, she will look even cuter. :)

We also have to go for her 12 month blood work in the near future. I'm not a fan and I know that they check for certain diseases. CANCER is one of those diseases. It worries me a lot. Our little ones have a greater chance of getting cancer, it's not fair and it's not right and I am not ok with it. I figure that if I throw it out there, we will be safe. Say a little prayer for us please.

I don't know if what I am about to write is wrong or if it will sound horrible.....

When I look at Adele, I see Down syndrome. I don't see Down syndrome in a bad way, so don't take it like that....it's hard to explain. I see the features and as she gets older, I see the features of Down syndrome become more prominent. Her eyes are shaped like almonds and the bridge of her nose is pretty flat. She doesn't have all of the features though, her pinky is straight, there isn't a big gap between her toes and the palm of her hand has more than one line. I think because she doesn't have all of the features, this is why the doctors questioned whether or not she actually had Down syndrome. I reassured them that the non-invasive testing and the amnio both came back positive. Adele has Down syndrome. Of course I see my child, of course I see Adele, I see a very beautiful little girl, but I see Down syndrome and sometimes I am reminded of the journey that lies ahead. I hope that this makes sense?!?!?

On the other hand.....

Sometimes, I am actually more relaxed with Adele's pace of development. I know that things will be a little slower. I know that she will speak later. I know that she will crawl later. I know that she will walk later. I know all of this and it actually puts me at ease. It's bizarre. It slows me down a bit and allows me to watch Adele develop at her own pace. It allows me to savour the milestones. It stressed me out before, but lately, I seem to just take it all in. I tell ya, this journey makes a momma overanalyze too many things.
I find that with Brinley, I stress more. She is my typical child, she is the one who should have crawled at 9 months, who should have walked at 12 months, who will speak at 2 years old. The path is set for Brinley. According to the charts and books and manuals, she will achieve all of these milestones at a certain time. There is a very small window. I don't know why we can't just let our children develop at their own speed and do things when they are ready. Brinley started crawling at 10 months, this was late. Brinley started walking at 14 months, this was late. Brinley does not say the 100 words that she should be saying by 2 years old. I see the posters when I take Adele to OT.
"Your child should be saying at least 100 words by 24 months. Please check with your doctor if your child should require speech therapy."

Mastering this whole sippy cup thing! :)

I spoke with Adele's pediatrician and asked if I should be concerned about Brinley's development. She put my mind at ease. She has watched Brinley. She has listened to Brinley speak. Brinley is coming out with new words daily. She told me to wait until she is 3 years old before I should show real concern.
I know that her comprehension level is amazing and she follows directions. Again, I need to savour all of the moments and enjoy this time, before long, she is going to be bossing me around and telling me how we should run this house. She kind of already does.....God help me!

I said the most ridiculous thing the other day. A girl that I had just met asked me if Adele looked like her sister. She didn't know that Adele has Down syndrome. I kind of paused, thought about it and said that Brinley's sister has Down syndrome.
Really? I actually said this to another person.
What was I thinking? It was like I was caught off guard. I have never been asked that question before and I didn't know how to answer it.
I should have said something else, but instead, I said that Adele has Down syndrome. I should have said that I wasn't too sure if they looked alike and shown her a picture of Adele and she could judge for herself.
I then realized that what I said was not the best answer. I corrected myself and said that just because she has Down syndrome, it doesn't mean that she doesn't look like her sister, Brinley. She understood.

I felt like an idiot. I just said something that others say who have no clue and it pisses me off. I just did it. I just wrote about this in my last post. SIGH
Both girls looked like their daddy when they were babies and now they are transforming into their own little identities. We made both girls (not in a factory) and of course they are going to look like us. I know that we are at the beginning of this journey and I have so much to learn. I will say things that won't come out the way they should and I will make mistakes. I follow a couple of other blogs, they have older children and they keep me in check. :)

Adele's Facebook page is doing stellar and the donations continue to come in. We are so grateful and thankful for all of the love and support. Thank you! Have a wonderful Sunday! xo

Adele's Over the Rainbow Baskets - Down syndrome LOVIN

22 June 2014


It's been a rough few weeks in the Down syndrome world. We have lost three, young and beautiful children.
I wanted to write about one of the little girls, Annie. Sometimes the internet and Facebook drive me nuts and other times, I love what it has done for our family and for others.
Rumours start floating around and I usually jump the gun.
I had read that Annie was denied a heart transplant because she has Down syndrome. I don't know if this is truly accurate information. I have heard many stories in the past few months, where a child was denied a transplant because they have Down syndrome. I have read articles from Canada and from the US, but it seems to be more of an issue in the United States.

My opinion....

I have two children and both girls should receive that exact same medical care and attention. I will not tolerate the medical profession telling me that because Adele has Down syndrome, she is not eligible for any kind of transplant. Adele is a human being, a valued life and she deserves the utmost care and attention, should she need it. She has the right to life, she has the right to be taken care of and should anything ever happen to Adele, she deserves to be taken care of just the same as somebody without Down syndrome.

This truly infuriates me and to be honest, when I first read that a child was denied a transplant because of Down syndrome, I thought it was false. There is no way that because a person has a beautiful ability, they would be denied a transplant.
We, as a community, need to come together and fight this, we need to take a stand. When I say community, I mean the whole world. Every child, every human being, deserves the same medical care.

Playing in the rain!! :)

I understand that if a child with Down syndrome has an underlying medical condition and their body will reject a transplant, I understand why they wouldn't be a candidate. I get it. I know that a person without Down syndrome, who has other medical concerns, would also not be a candidate. I just need to make sure that doctors are not discriminating. I need to know that hospitals are not discriminating. I need to know that every human being will be treated as equals.

James and I are the girls strongest advocates and we will fight for both of them, we will make sure that they are loved equally, respected and that they are viewed by others as equals, I can't stress this enough.

I think that in the future, I am going to write a book.....it will be called;
Please feel free to submit your own ridiculous lines.....

- She sure looks like she has a mild case of Down syndrome.
- Her head is so round, she must be mild.
- Kids with Down syndrome are ALWAYS happy.
- I'm so sorry that this happened to your family.
- She looks so normal.
- My uncle's brother's nephew's cousin is autistic, so I know what it's like.
- Why didn't you stop having kids after the first one? WHAT???
- Did this happen because you and your husband are related?
- Wow! How old were you when you had her?
- You are a saint.
- Will you ever have any more children? That's kind of scary!
- Well, I guess it could be worse!
- God has given you a child forever.
- Does she actually look like a family member?
- You sure are handling this well.
- Do her brothers and sisters have a bond?
- Did you actually know when you were pregnant?
- What's wrong with her?
- Did you drink? Smoke? Do drugs during pregnancy?
- Will she always be like that?
- Is it somebody's fault?
- Did it come from your side of the family?
- They don't live very long, do they?
- I guess you won't have grandchildren.
- I'm sure she will get a job, maybe at Wal Mart or something.
- Do you take her out?
- Is her sister handicapped?
- You should feed her more.
- Does she sleep?
- What will happen to her after you die?
- Is the rest of your family ok with this?
- You must be exhausted.
- Ummm....she's so......cute.
- Did you consider adoption?
- Is there a chance that she will outgrow it?
- I guess you can't go on vacations.
- Can I touch her?
- Stare....stare...stare....stare....stare.....

I get that in most instances, it comes from a place of misunderstanding. I love to be the one who explains and educates. I love when people ask questions, I love when I get to explain how our world is, some ups and some downs, but a whole lot of love. The only time that it really bothers me, is when somebody is intentionally hurtful. Some of the above are to make you giggle and have a little chuckle. Before Adele, I know that I would have said some of these, so please take this lightly. I am not bashing. I want others to ask questions, I just have no tolerance for disrespect and unkind comments.

When we try to be a big girl and not take a nap!

A Perfect Extra Chromosome - Awe-Inspiring Miracles

10 June 2014

Hip and Cool and Awe-Inspiring.....

The days seem to fly by lately. We haven't really been all that busy and part of me feels like I'm going stir crazy when things aren't as hectic. I don't know if that makes sense. Mornings are for; getting up, getting ready, feedings and naps. We leave our fun stuff for the afternoons.

I've taken the girls to Tommy K Play a few times now and it's a really great place. The first time we went, it wasn't busy, which made Brinley happy. She needs to get familiar with a place and take in her surroundings before she feels comfortable. There were a few kids and once Brinley felt safe, she started to interact with them a little more. It was a fun afternoon, no injuries, no tears, just fun.
I decided to go back again, but this time it was raining out, so I figured that it would be a little busier. It sure was.
We paid, got our bracelets and went to sit down. The only chairs that were available were behind a support beam. I took two chairs, one for the diaper bag and my purse and one for myself, Adele and Brinley. My plan was to snuggle with Adele while keeping Brinley in view. We sat beside the hip moms, the ones with the Peg car seats, the skinny jeans, the coiffed hair, the pretty babies, you know, those moms.

I set Adele down and figured that Brinley would be thirsty....ok, I could leave Adele for a minute, I can see her from the drink counter. I had the clip undone just on her chest but she was still buckled up, so she was secure.
Brinley and I made our way to the counter, I was watching Adele. I could see one of the hip, cool, trendy moms get up and jump over to Adele. AWESOME!!!!
She grabs Adele and starts to walk over towards me.
"Is she your baby?"
Well, I just walked past you, around 30 seconds ago, the one with the car seat (Graco), the diaper bag, the purse, the toddler, you know, me, the one who is sitting beside you?
"Yes, she is mine." I was feeling a little sheepish and neglectful. "Did she arch?"
"Yes, she almost flipped herself out."
I kind of doubted that considering she was still clipped in, unless my child is Houdini! Wouldn't that be cool!!
"Thank you for bringing her to me."
I take Adele and realize that she has a big, stinky dump.
So now, the trendy, hip, cool mom knows that I neglect my children and I don't change their diapers. This is going well.

Wearing red to support the RCMP

I head back with my two children, to our chairs, behind the beam.
Brinley wants me to climb through the tunnels with her and go down the slide. My first thought.....my ass won't fit on the slide and my second thought....I will get stuck in one of the tunnels and trendy, hip, cool mom will have to rescue me. She will call Child Protective Services and my day would soon be ruined. Mind you, if CPS came and took my children, I could go to Starbucks, it is so close, I could have a coffee, check my emails, pretend that I have a quiet and peaceful life. CPS would babysit my children for a few hours, do a background check and realize that I was probably just having an off day. I would be all rested and rejuvenated by the time they returned my children.
Hmmmm.....something to think about. :) (Please know that I am kidding for those of you who don't get my craziness)
Anyways, I had a baby that needed me, so Brinley would have to find some playmates to go through the tunnels with her.

She was more comfortable on the second day and actually went up to several of the kids and had a 'conversation' with them. It was pretty sweet.
The hip, cool, trendy moms would smile at Adele and comment on her cute outfit. I would smile back and continue to eavesdrop on their conversation. Nothing interesting going on, no real gossiping, such a disappointment.

I was trying to keep my eye on Brinley but it was difficult, the damn support beam. I would flip back and forth in my chair, looking like a dork, but whatever, I'm hip too....sometimes.

James showed up after work and climbed through the tunnels with Brinley and went down the slide. I was safe.

We went back to Tommy K Play today. The girls didn't have good naps and I was feeling frustrated and was losing my patience. I wanted to get out. The house was a mess and I didn't care, I needed to get in the car and go somewhere.
After we had been there for a while, one of the moms came up to me and asked if I was Krista. I was worried that I was being served. :)
Her name is Kandis and she reads the blog. She said that she has been reading the blog since the beginning. She got teary as she was talking to me and told me how much she loves it and that she checks every night to see if there is a new post. I got teary too, but a happy teary. How nice that she would come up to me and let me know that she appreciates what I am doing. It was a happy moment.

Brinley, Adele and I went back to our comfy chairs and while sitting there, another beautiful mom came up to me and asked if I was Krista. She told me that she follows Adele's Facebook page.... Adele's Over the Rainbow Baskets - Down syndrome LOVIN' :)
She loves the pictures and keeping up to date on the girls. Shauna told me that her son is autistic and that she can relate to some of the fears and struggles. We are all on our own journeys and it is something to always keep in mind.

I mentioned this in the last post about not being so quick to judge. There was a lady in a full burka today at the play place. All that was showing were her eyes. It is not a familiar site to any of us. Brinley was scared and a bit teary as she has never seen this before. Her little girls would come up to Adele and chat with her and touch her face. I'm ok with this because this is what kids do, they love babies and they love to touch. My first thought was that she probably didn't speak English and then I thought that maybe she wasn't allowed to talk to me. Her husband was there in western clothes, talking on his phone the entire time. I was sure that he made the rules. I thought about my last post and I wasn't going to pre-judge. I asked her how old her girls were and she asked me the same question. She could see Brinley hiding behind me and then she would peek around me to catch a glimpse of something that she didn't quite understand. I told her that Brinley is pretty shy and the kind woman told me that Brinley is probably scared and that she hasn't seen this type of dress before.
She was right.
I asked her how long she has been in Canada and she told me that they have been here for five years and that they came from Pakistan.
She was kind.

LOVE my new pyjamas!! :)

It is so important to me that my children see me as a kind and loving person. We accept people for who they are and we need to get to know others. Ask questions. Don't judge.
It was a really great moment.
Today at the play place, I met three amazing women all on their own journeys.
Take the time to meet people. Take the time to learn about their journeys. Take the time to teach your children that we are all unique. We are all special. We all have a story.


Adele's Over the Rainbow Baskets - Down syndrome LOVIN' presents - A Perfect Extra Chromosome - Awe-Inspiring Miracles.

This is a video about inclusion of ALL children, of ALL abilities and ALL walks of life. It is fille
d with love and acceptance and beauty. Please share this video with the world! Let's go viral!
Thank you to Brian Campbell for creating our video. Many hours and a lot of dedication went into the making of the video. We are forever grateful. My shameless plug for Brian - He is a member of the band Blades of Steel! They are on ITunes and they are pretty awesome.

A Perfect Extra Chromosome - Awe-Inspiring Miracles

Sometimes our babies just need some snuggles <3