Monday, October 31, 2011

21 things I love about you

Pin It

This is the last day of the "31-for-21 challenge", and I am glad I 'made' it, posting every day.
It was kind of hard, so I sort of 'cheated' here and there by keeping it short and just posting a picture. 
It takes a lot of time, and besides that, I am not one to easily share my feelings with 'the world'.
But I hope my posts have been interesting, and maybe even encouraging to someone out there that is going through similar experiences. Thanks to everyone who has been reading these posts! 

Since our baby girl has an extra copy of the 21st chromosome (Trisomy 21=Down syndrome), 
I thought I'd create a list of 21 things I love about her as my final post for the "31-for-21" challenge.


(In random order)


21 things I love about you

  1. Your big blue eyes - almond shaped and all
  2. The way you stare at your hands, you think they are amazing
  3. Your smiles, grins and giggles
  4. The way you talk, cute noises
  5. The way you gaze in our eyes as you're talking to us
  6. How you like to look at your big sisters when they are playing
  7. How you like to smile at your big sisters
  8. How you are usually sleeping between midnight and 7 - thank you, little girl!
  9. Your long, dark eyelashes
  10. Your chubby cheeks
  11. Seeing you kick your little legs happily when you spot one of us
  12. Your sweet baby smell - except for the diapers ;)
  13. How you are enjoying your baths
  14. The way you grab our fingers
  15. The cute long 'tail' of hair on top of your head
  16. Your chubby hands and feet
  17. The cute little sandal gap between your big toe and the next one
  18. How you like to suck your thumbs, either one is fine
  19. The way you stretch and try to roll over when you see a favorite toy or something interesting
  20. How you've taught us that perfection comes in different forms
  21. How you have shown us that having a baby with Down syndrome is not a bad thing - actually we're very lucky to have YOU
Love you, baby girl!

Pin It

Happy Halloween

Pin It


We've been busy with Halloween preparations:
carving our pumpkins, 
toasting pumpkin seeds,
making treats for school,
decorating the house with some cute pumpkin and candy corn lights 
(that I got for VERY cheap some time in November last year).

I even got the treats ready, since I'm usually surprised how early the first trick-or-treaters are coming, 
and then I am running around like crazy to get candy ready, the kids dressed up, etc.

So I guess we're ready for Halloween :)

Pin It

Sunday, October 30, 2011

A beautiful day at the park

Pin It


This weekend we went to the park to take some pictures.

The weather was so nice.

Loving all the fall colors!


These girls were excited to find a squirrel.


And the squirrel didn't seem to mind them so close, he was just looking at them.


Little sister was content to hang out in her stroller, taking it all in...

Pin It

Saturday, October 29, 2011

Favorite toy!

Pin It


This little cat is Little Miss N's favorite toy.

Whenever she spots it, she HAS to get it!

So we use it a lot to get her to roll over, reach for things, etc.

It's nice to have something that 'motivates' her to move, 
so we use it during Physical Therapy, too.

It's so cute to see her 'play' with it :)

Pin It

Friday, October 28, 2011

Thursday, October 27, 2011

No time to be bored...

Pin It

The past three days
in our house
we've had 

someone with a stomach bug
someone with hand, foot and mouth disease
someone who managed to get chewing gum stuck in her hair... TWICE 
someone who got a bead stuck in her ear, requiring a trip to the doctor to get it out.

Who does have time to get bored around here?!


Fortunately none of it involved the smallest member of the family...



Nope, she's just as innocent as she looks...

Pin It

Tuesday, October 25, 2011

Pin It




Our baby girl smiles a lot.
However, it's not so easy to take a picture of her smiling.
She is very curious, and the instant she spots a camera, she HAS to 'check it out', which results in a very serious look.

The trick is taking a picture of her without her seeing the camera.
So for now no pictures of her looking at the camera with a smile, but  pictures taken from the side when someone else is distracting her and trying to get her to smile.

This one is cute anyway :)


Pin It

Monday, October 24, 2011

Down syndrome: what do siblings think?

Pin It



Often one of the concerns of parents whose child is diagnosed with Down syndrome, 
is that it will burden the other kids down the road. 
They think the child with Down syndrome will need too much attention, thus taking it away from the other children, 
and when the parents are gone, the siblings might be the ones to take care of their brother or sister with Down syndrome.

But do siblings really see their brother or sister with Down syndrome as a burden?

Not according to this study:

Having a brother or sister with Down syndrome: Perspectives from siblings.

This study asks brothers and sisters about their feelings and perceptions toward their sibling with Down syndrome (DS). They analyzed valid and reliable surveys from 822 brothers and sisters whose families were on the mailing lists of six non-profit DS organizations around the country. 
  • More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; 
  • 94% of older siblings expressed feelings of pride. 
  • Less than 10% felt embarrassed 
  • Less than 5% expressed a desire to trade their sibling in for another brother or sister without DS. 
  • Among older siblings, 88% felt that they were better people because of their siblings with DS 
  • More than 90% plan to remain involved in their sibling's lives as they become adults. 
  • The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing. 
© 2011 Wiley-Liss, Inc. 


Patti from "A Perfect Lily" had her older children share about their feelings about this subject in this very touching video:




I remember talking to one mom who told me that she and her husband were debating whether or not they would keep the baby they were expecting, knowing that he had Down syndrome, when her older boy, who was 12 at the time, came in, and overheard the conversation of his parents. 
His response?
"Of course we are going to have this baby, he is our BROTHER!"
So touching!
And, I am happy to report they didn't terminate the pregnancy, and he is the best and most proud big brother that this little toddler with Down syndrome could wish for!


I have heard a lot of parents say that having a sibling with special needs made their other children better people.


These things have been very encouraging to me! 
And, looking at my oldest 2 girls and how they adore their baby sister makes me very happy and supports the findings in the study I mentioned above...

Pin It

Sunday, October 23, 2011

Lesson from my kids

Pin It

Two years ago we happened to have the privilege to be involved with the Special Olympics World Winter Games.

Our girls were 2 and 4 at the time, and they LOVED it.

They were so involved, and admired all the athletes. A lot of them had Down syndrome.

My girls really adored the athletes, and wanted to be just like them.
My 4 year old had noticed they were a little 'different', as we found out months later, 
but she didn't see that as a negative thing at all.

Admiring the gold medal of one of the athletes.

That is such a great lesson. 
I wish that everybody would see the person first, and their capacities, rather than look at the limitations someone might have.

I know a lot of parents of kids with Down syndrome are sort of offended when their kids are referred to as "Down syndrome babies" or "Down syndrome children". They would prefer the following: "Babies with Down syndrome" or "Children with Down syndrome". 
Putting the person first, rather than the syndrome.

Personally, I don't have too many issues with the way people phrase things. 
I think the intention matters much more than how people say it. 
If they mean well, I don't get offended too easily.
But since not everyone feels the same, I thought I'd mention it...

But I love the lesson from my little girls: admire the PERSON first :)

Pin It

Saturday, October 22, 2011

Having fun crocheting

Pin It

With the weather cooling down, 
our youngest needs her hats again!

But she outgrew all the hats I made her earlier.

So it was time to make some more...


 

I also fancied up some plain hats from the $ store, by sewing crocheted flowers and leaves on them. These are nice and stretchy, so they fit my older girls, who have to be able to wear them over their hair...




Simple and fun...


And since I am still doing the 31-for-21 challenge to raise awareness for Down syndrome , 
just one more picture of our dear little girl, wearing one of her new hats and showing off her beautiful almond shaped eyes :)

Pin It

Friday, October 21, 2011

Hoppin' for 21

Pin It


Today is October 21 (just a little bit longer), and I just learned about this blog hop:

"We want to support all those that rock that extra chromosome with a blog hop on the 21st!
Hoppin' for 21 is hosted by 

Crazy Beautiful LoveThe Bates Motel, and Carrie with Children. "

So I decided to join it!

Hope you like to check out some of the blogs on here!




Pin It

Wednesday, October 19, 2011

Things I wish I would have known when our baby got diagnosed with Down syndrome - Part 3

Pin It

This is probably the most important thing I wish I would have known a year ago.

I wish I would have known a year ago how falling in love with your baby would change everything.





Simply the joy of having her around, and how much we love her, totally outweighs the worries we had and still have.


Yes, we still have worries about her.
But we have worries about our other kids, too.
I think it's only natural for parents to worry about their kids,
or for people to worry about people they love.

The fact that your child has 46 chromosomes (which is the typical number of chromosomes in a human cell), 
is no guarantee for a life without worries.

But adding an extra chromosome definitely does not take away from the love you have for your child and the joy they bring...

Pin It

Tuesday, October 18, 2011

Things I wish I would have known when our baby got diagnosed with Down syndrome - Part 2

Pin It

Did you know that we were told not to read any literature about Down syndrome that is more than 10 years old?

People used to think that individuals with Down syndrome were not able to learn.
They thought they were 'trainable', but not 'teachable'.

It's not too long ago that parents of babies with Down syndrome were told to send them to an institution and forget about them.

Since it's not too long ago that these things happened, it's best to stay away from outdated information. Therefore, just looking around randomly for information is not always helpful. I think the NDSS website is a great start for people looking for accurate information on Down syndrome.


We have had a lot of help after our little girl was born, and even some beforehand, in different ways:

There are several therapies that help individuals with Down syndrome to reach their fullest potential:


Physical Therapy
Occupational Therapy
Speech and Language Therapy.


At the moment our little girl gets Physical Therapy, and the plan is to start Speech Therapy around 6 months. That might sound funny, but apparently even the way you feed your baby influences the way they use the muscles that are used for speaking down the road. 


So far little Miss N has reached all her milestones in time. She is smiling, cooing, rolling over, reaching for toys, etc.


Therapy sort of helps to stay ahead of the game.


We know that there will be a point that she will show developmental delays, but it really helps to know that she is getting all the help she needs to develop at her best potential. 


They make it easy to incorporate therapy in our daily lives, it's not like we have to do exercises all day long. For example, each time when we change her, she does a baby "sit-up", or we play on the floor to strengthen her neck and tummy muscles. Even her big sisters can help, which is a lot of fun.




I sort of dreaded the thought of therapists running in and out all the time, but guess what? It's not bad at all, we really like our therapists and we enjoy doing whatever we can do to help our girl.


We have more resources in our community, like Down syndrome playgroups, and even activities  for parents of children with Down syndrome, lectures, etc. All these things have been very helpful to us.

Pin It

Monday, October 17, 2011

Things I wish I would have known when our baby got diagnosed with Down syndrome - Part 1

Pin It

I think we have come a long way this last year.

It's almost exactly a year ago now that we had the ultrasound that showed that our little girl might have Down syndrome or another chromosomal abnormality. 
It took over a month before we knew for sure what was going on.

Now, a year later, there are some things I wish I would have known back then. 
So in case someone who is in the same boat as we were, reads this, or someone who knows people who are going through this, I thought it would be useful to share.
Of course, every person is different, situations might be different, but I hope this can be helpful and encouraging.

Did you know there are a lot of families that have a child with Down syndrome that decided to adopt another one? 
If it would be really that hard, I think nobody would be able to do that!

Some blogs that I really find interesting and encouraging are:

This family has 3 adorable kids, the youngest two have Down syndrome.
They adopted their youngest girl from Russia.


The following blog is very inspiring, too:



They have 3 kids, including Ben who has Down syndrome.
They are in the process of adopting Davis, who has Down syndrome, too.
These international adoptions are expensive, so they can use any help they can get!





Grab This!

Isn't he cute?

I love the fact that their mom, Amy, even has the room for him and his bigger brother ready already.
She is very crafty and has great taste.
You can look at the room that is waiting for him HERE.

I also love the following blog:
Confessions of the chromosomally enhanced

The writer of this blog has an older sister who has Down syndrome.
In 2010, she and her husband decided to adopt Josie, who has Down syndrome, too.
This blog is about Josie and her aunt Leanne. I like the subtitle: "A Diary of Dual Downs Divas".

There are so many more blogs out there of people who know first hand what it means to live with someone who has Down syndrome, and then go on to adopt a child with Down syndrome.

Wish I would have known that a year ago, that would have been very encouraging...

Pin It

Saturday, October 15, 2011

Down syndrome poem

Pin It


My face might be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To him I’m no different
His love knows no bounds
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I’ve chosen
Will help me get started
For I’m one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I’ll do as you do
But at my own pace.


                                                                           Author unknown 

Pin It

Friday, October 14, 2011

How do you tell people that your child has Down syndrome?

Pin It

That's a big question, and I know it is for a lot of parents that are in the same boat.

For us, it started during the pregnancy.

Since we found out pretty early (I was just a little over 3 months along), 
we decided we'd like people to know before our baby was born.

That way, by the time she was born, most people would be 'used to the idea', 
and would be ready to just be happy with us that she was here.

But then the next question: 
How do you tell people?



We started with our close family and some close friends, pretty much right after we found out.

We decided to leave it at that for a while, to allow ourselves some time to get used to the idea.

We waited about 2 more months to tell other people.
We needed that time, so that we'd feel "strong" enough to talk about it with other people.
We send out an email to let them know, just describing how we felt.

And that worked good for us.

It also gave the people that received that email the chance to think about it, rather than to have to come up with something to say immediately, which they would have had to do, if we would have told them in person. For some it was easier to write back to us, rather than say something in person, which was fine, too.

Still, the most awkward thing for me, is to tell people that I don't really know too well...

When someone in the store tells me how pretty my baby is, 
I just say "Thank you" and leave it at that.

But once I get to know someone a little more, for example other moms at my older daughter's school, 
I feel like there is a point I need to say something.

It's not that I'm sad or embarrassed or anything like that.

It's more that I feel it's a little awkward for the person I am talking to. 

I don't want them to feel bad for me, I don't want them to feel like they don't know what to say.

Usually I tell them that we knew before we had her, and that we were glad for that, so that it wasn't a shock at birth. That it gave us time to get used to it, which is so true. 
That usually is enough to make the other person feel "OK", since they see we're OK.

So far we have had -mostly- good reactions, which is nice.

But I always have to take a deep breath (in my mind that is) before I tell them...

That's OK, I guess :)

Pin It

Thursday, October 13, 2011

Reece's Rainbow

Pin It

While checking out blogs about Down syndrome, it didn't take long before I found some links to "Reece's Rainbow". 




"The mission of Reece's Rainbow is to rescue orphans with Down syndrome through the gift of adoption, to raise awareness for all of the children who are waiting in 25 countries around the world, and to raise funds as adoption grants that help adoptive families afford the high cost of adopting these beautiful children."

On their site, you can find so many little ones with Down syndrome in other countries, waiting to be adopted. 
It is heartbreaking to see and realize that the majority of these children ended up for adoption simply because they have Down syndrome.

I think, though hard, it is good to go to their site and see for yourself how many kids are waiting for a home.
And, like they say on their site:


"Even if you are not in a position to adopt or fund a child's adoption, there are countless ways to help these sweet children…."


Go HERE to see how.


I think that they are doing a great job, and have been following several blogs where people have adopted, or are in the process of adopting, one of these little ones. 
I might share some about that later this month.

Pin It

Tuesday, October 11, 2011

So cute

Pin It


This picture is sort of blurry,
but just love the expression on her sweet little face, 
 love her chubby cheeks,
love the little spot with long hairs right in the middle of her head,
just love HER...


So just had to share this picture in spite of it being blurry.
Wish I'd used a real camera to capture this instead of a phone...

Pin It

Monday, October 10, 2011

Some good advice

Pin It



When we learned that the baby we were expecting had Down syndrome,
I felt pretty overwhelmed.

I am sort of a control freak, and I like to plan things as much as possible.
I don't like to feel like I have no control of a situation.

This was definitely a situation where I felt like I was totally out of control.


I felt so worried about our little girl and what her future would be like.

We talked to some other families who had little ones with Down syndrome.

One mom gave me some good advice.

She said: "I am the kind of person who likes to plan everything. 
So when we learned our baby had Down syndrome, I wanted to plan out her whole life. 
But I had to let go of that. We don't plan our other kids' life up till retirement, either."

That was an eye opener. It was like I heard myself.

And I realized I needed to let go more.

Not worry too much about the future.

Just taking it one day at a time.

There are still days when I do feel overwhelmed by it all.

But trying to just take it one day at a time and enjoying the good moments, does help a lot.

When I try to focus on the good things, 
I am definitely able to just enjoy our little family and feel so rich!

So my little girl taught me a big lesson!


Pin It

Sunday, October 9, 2011

What can people with Down syndrome do?

Pin It

The answer is: A LOT

Probably a lot more than you would think :)

The blogger of Life is beautiful, who happens to have a sweet little girl with Down syndrome herself, made an awesome compilation of video clips and articles featuring some amazing people with Down syndrome.

It is really quite something to check out, so please go to the following link:


They can be musicians, athletes, teachers, actors, too many things to list really.

So please check out the link, you'll be amazed. 


And while you are there, you may as well check out some of her other posts and see her adorable little girl!

Pin It

Friday, October 7, 2011

Weekly Planner Dry Erase Board - Tutorial

Pin It

Just looking at my own blog during this first week of the 31 for 21 challenge, 
I realized something was sort of funny:

If you look at my blog and all these posts about Down syndrome,
it seems that it is the only thing I can think and talk about.

The reality?
It's not!

Mostly, we're just enjoying our little girl.
There are moments when we get reminded again that she has 
Down syndrome, but mostly, our life is just 'normal', 
whatever that is...

So to 'prove' that, here is another craft ;)

I needed something besides an ordinary calendar to keep track of my daughter's schedule. 
Since it would be hanging in our kitchen, I wanted it to be pretty, besides functional.

So I came up with this:



It's a dry erase board, that has her weekly schedule already printed on it, 
with things she needs to bring to school, and other things that happen every week.

I made sure I have plenty of room to fill out appointments, etc.

Now, every week, I can just add things that we need to remember that particular week.

Simple, but it works great.

Wanna make your own?

This is what you need:

* Picture frame
* Fabric, slightly larger than the glass in the frame
* Masking tape
* Cardstock (mine was just a standard 8.5x11), smaller than the glass in the frame
*Double sided tape
* A marker to write the schedule, or a computer and printer

1. Create the weekly schedule, by printing it or write it by hand.
Make sure you have enough room to write in extra things.
If you have more kids in school, you could make separate columns for each child, 
or even make a separate one for each child.

2. Take out the backing of the frame. 

3. Put the fabric on top of it, as if you were to frame it. 

4. Put some adhesive or double sided tape on the back of the schedule, and attach it to the center of the fabric.

5. Put the schedule and fabric, together with the backing of the frame, back in the frame.
(So it will be underneath the glass, that way you can write on the glass later.)

6. Fold over the extra fabric and stick it with masking tape to the back.
Not pretty, but who will see the back anyway?!

7. Grab a dry erase marker, and start using your new board!






And since this organizer thing (what do you call these?) is also hanging out in our kitchen, 
I might as well share it in this post, too...

I've had it for quite a while, but recently updated its look.

I gave it a fresh layer of spray paint and used some stencils to create this:


Since the cork board looked so plain, I stenciled part of that, too.


A fun, quick project, hardest thing for me was to wait till the spray paint was dry...

Pin It