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


  1. If I kicked myself for every 'stupid' comment I made in relation to a question about B in the past few years well...I'd be pretty sore! ;) Just think of how savvy you're response will be next time (and there is always a next time!). And BTW Adele DOES look like Brinley and both of her stunningly gorgeous makers! :) <3

  2. This is why we get along so well....we are both crazy, in a good way! ;) So much learning to do! Thank you for being so kind, I sure like you! I think that you are a pretty smashingly great mommy. xoxo

  3. Krista nobody is perfect and I surely dont expect you to be. *Hugs*

  4. Ah hell, I use to beat myself up over stuff like that all the time! I wanted to do and say everything perfectly when it came to Russell or Ds. I wanted to be the very best advocate I could...I wanted to always say the right thing so I could teach people. But the truth is, almost five years later, I am still learning. So don't sweat it my friend, we all get caught off guard, say something the wrong way or don't explain ourselves they way we mean to. You're an awesome Mom...And an amazing advocate for your daughter :)

    1. Seriously JC....where the hell have you been? I have been waiting patiently for you! :) Thank you for commenting...you know how I feel about you!!! xoxxo