Celebrate

Scenic route

I read this inspirational quote in a newsletter we received.

The author is unknown as far as I can find. Please correct me if I am wrong...

The picture above is my own. Feel free to print it for personal use.

So far this has been so true!

We have to work a little harder to get our little one to do certain things,

but once she does them, she makes us so proud.

And if she adds one of her huge grins to it, that's even better!

A year later...

It has been almost a year that I wrote about my little girl on this blog.

Mainly because this blog is a craft blog, but once a year I do make an exception,

because October is Down syndrome awareness month.

So how has our youngest been doing this year?

She is doing great!

She is sixteen months old,

and a happy and active little girl.

She was born with a heart problem, a so-called VSD and an ASD.

That is a condition that could solve on its own, but unfortunately that wasn't the case for her.

So in November, she had to have open heart surgery.

There haven't been many moments in my life that I was SO nervous and scared as the moment when we handed her over to be taken into surgery. But there was no option, not doing it would be fatal eventually.

Luckily, she went through it like a champ. Recovery was quick, and like her cardiologist wrote later in a letter "she seems to have set all kind of records in recovery and leaving the hospital so soon". 

Since then, things have been going pretty smoothly. 

She is healthy, and keeps learning new things.

We all love her to pieces!

October is Down syndrome awareness month!

Those of you who have been reading here for longer than a year, may remember that last year I took part in the "31 for 21" challenge:

Blogging every day of the month to raise awareness for Down syndrome.

31 days for Trisomy 21

Blogging every day is time consuming, but I decided to do it anyway.

The reason?

This little girl:

Meet our youngest!

So sweet,

funny,

active, 

curious,

entertaining,

lovable,

determined.

I could go on and on and on...

And, she happens to have an extra copy of the 21st chromosome,

also called Trisomy 21,

or Down syndrome.

I hope you'll follow along while I blog every day of the month to raise awareness for Down syndrome! You could also make others aware by posting this button on your blog, or even take part in the challenge. (You don't have to blog about Down syndrome every day, only mention daily that you do it to raise awareness...)

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World Down Syndrome Day - Check this out!

Today is World Down syndrome day:

3-21-2012 


World Down Syndrome Day is celebrated on the 21st day of the third month of each year to symbolize a third copy of the 21st chromosome in Down syndrome. This year is especially exciting as it is the first year that the date is officially recognized by the United Nations!

In honor of this day, parents of children with Down syndrome were asked the following question:

If they could go back right before they had, or adopted, their child(ren) with Down syndrome, 

what would they tell themselves?

Watch the following video for their answers, it's beautiful!

(My youngest daughter has Down syndrome, 
so that is why this clip is very touching to me.)

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21 things I love about you

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!

Favorite toy!

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 :)

A different perspective :)

(If you have Down syndrome, you have 47 chromosomes, instead of 46, which is typical.)

Sound asleep...

Down syndrome: what do siblings think?

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. 

Skotko BG, Levine SP, Goldstein R. 

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...

Lesson from my kids

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 :)

Hoppin' for 21

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 Love, The Bates Motel, and Carrie with Children. "

So I decided to join it!

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

"I make these genes look good..."

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

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...

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

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.

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

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:

Our perfectly imperfect life

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!




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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...

I have a voice

Down syndrome poem

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 

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

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 :)

Reece's Rainbow

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.