Winter Wonderland

It may be the earl grey tea and biscotti, the fact that my house is clean, or the beauty that has taken over this frozen tundra but for whatever reason the view today is marvelous. 

I will avoid much explanation and just say that the weekend is looking pretty good from Monday's perspective. Highlights include:

1. A Girl's night filled with Christmas baking, red wine, delectable cheese, Jane Austen and some amazing women.
2. Warm coffee and fresh cinnamon buns at the Tea house
3. The Three Hills Christmas Market: community, music and art. Be sure to check out Chickadee Swing and Three Acorns for some great christmas gifts.

4. Patron of the Arts reception to say a big thank you to all of the Arts Academy's donors and volunteers. Thank you again for investing in your the arts and your community.
5. Home For Christmas Concert:  homespun stories of Christmas past, choir,strings, bells and brass.
6. The First Sunday of Advent

"Advent is a season of anticipation and preparation for the coming of our Lord Jesus Christ who became flesh, died on the cross for our sins and was resurrected by the power of God. It is a spiritual journey as we affirm that Christ came and will come again in power. Just as the Israelites looked to their salvation from the hand of the Egyptians, we also look to redemption for all of creation and stand firm in our hope for eternal life.

Today we light the first candle, which represents hope. The light reminds us that Jesus is the light of the world. He entered into the darkness to bring newness, life and hope.

The light also reminds us that we are called to be light in a world filled with darkness as we reflect the light of God’s grace to others."

7. The Wonder Years Conference put on by Ups and Downs: inspiration, encouragement, friends and the leaders of tomorrow. Thanks to Amber and team for all the work that went into the planning of such a great and beneficial event. And thank you Arlene for the highlights.

Happy Monday Everyone!

It Gets In Your Blood...

There is a strange transformation of the soul as you live out each day with a child with Down Syndrome. You fall in love......not only with your own angel but with every set of almond eyes you see. You realize that these children need to be loved, and are a blessing, and can teach you more than you can ever imagine. Your heart aches as watch the world reject these "imperfect" individuals: from conception to their very last breath. I've read it over and over - parents who are surprised with the joy of having that one extra chromosome take over your life. Its gets in your blood and your world is turned upside down, and you need more....I must confess that Ben and I were certain we would be done having children after two, but my heart has been changing. And whereas adoption was non-applicable to us before, God is pulling at my heart strings. This is not to say we will adopt or even that we will have more children but the ministry of finding these angels their forever families seems all the more important. These children are in a race against time. Most are transferred by the age of 4 from orphanages to institutions where they may or may not get the medical attention that they need let alone, love, stimulation or the chance fulfill their God given potential. More than half die within the first year.
I have been convicted over and over by the many passages of scripture where God speaks of taking care of the orphans and the fatherless. God is calling us to action. Reece's Rainbow is a ministry which strives to find every angel their forever family. You may not feel that you are able to care for one of these "forgotten" children, but there are people out there who do, and you can be a part of bringing their angels home. Please give. I am posting the profile of Melanie. I have gotten to know Melanie's forever family and their deep love for her is evident - they just need some help financially to get her in to their loving arms, warm bed and care that she deserves. Even if it is only a dollar, or five, it makes a difference. All donations are tax deductible.

http://reecesrainbow.org/sponsorsader

You can also donate on the Sader's blog:
http://reecesrainbow.org/sponsorsader

I don't often post things like this on my blog but I keep thinking about how if it was me, if down the road Ben and I felt such a high call to care for one of these children, I could only hope that there would be people out there willing to help us.

Please help this family get their Christmas wish....

Thank you.

Thankful.....(caution-not so inspiring rant)

Written today around 3pm...
Today, our friends south of the border are celebrating Thanksgiving and I am feeling the need to count my blessings likewise but am having extreme difficulty. I thought I was prepared for the start of Advent. By  the beginning of November my christmas shopping was well underway, I had made my spreadsheet of christmas card recipients, started to write our church advent readings and was generally stoked and ready to go. But at some point in this past week pandora's box opened and chaos insued. Things had been put on hold during Ella's epic week of the flu and now it is catch up time. I thought if I just focused on one thing at a time, checked it off and moved onto the next I would be okay. I could feel the seams stretching but was managing to keep it together. Well today....I think the seam has broken....and I am about to come undone.
Thankfully the Advent readings are done. The album I had to do this week in a hurry so it would be ready for a client by Christmas is done, big shop for Saturday's reception is done. Staff meeting and review: done. And now, I am taking a break from creating about 100 favors for the Patron of the Arts Reception. But here is how I know the seam has come undone: I am not having fun doing it. It is clouded by the chaos that still reigns. Jakob flooded the basement again in attempts to get rid of the snow by leaving the hose on outside, he has taken to peeing on his carpet for the fun of it and lets just say, there is no nap time in the Ewert house today.

Its now 10pm:

Favors are done. I just got back from teaching a choreography workshop for a bunch of highschool students and it's now past my bedtime but I feel like I need to write. I need to take inventory and count my blessings now that the storm has settled, at least for the next 8 hours. I hadn't finished my post this afternoon because after reading it, I didn't want to post it. I don't want to write things that are full of self-pity and completely uninspiring, but the bottom line is that I am human and I have my moments (okay, my days....sometimes even weeks). And hopefully at the end of a day like to today, I can look back and say that I have lots to be thankful for. And I do. I called the doctor's office today and confirmed that Ella's blood count was normal. Praise the Lord! And although this week has been busy it has been busy with good things: opportunities that I had hoped for. My life is beautiful.

He can be a little hellion at times but he really is a good big brother.

Little Baby Doe

All day long I have been following news on little baby doe. I mentioned him in my last post. What had happened was a family had committed to adopting a set of twins. Upon arrival at the hospital they discovered that one of the twins had DS and was in critical condition. They took one baby home and left the other twin with a Do Not Resuscitate order. Throughout the day there has been posts on facebooks and blogs pleading individuals to write the Governor of Arkansas, where the twins were born and the DS Adoption Awareness coordinator for the area. There also is apparently a homestudy ready family prepared to adopt the baby.
Here is the thing-all correspondence in regards to this matter have been on facebook. Naturally, one then calls to questions the validity of facts. But here is how I see it - true or not, whether this was the way it appears or simply a "drill" the DS community proved themselves today. DON'T MESS WITH OUR KIDS OR WE WILL ALL COME AND GET YOU! I knew I was welcomed into a special community when Ella was born, but today takes it to a whole new level. When word was out that the DNR order was taken off there was an uproar of rejoicing and pride. The group of 200 that was just set up today exploded with "Praise the Lord"s Cheers and Prayers.
Take it as you will, but God was in this situation today and it was beautiful.

Sneak peaks
The Arkansas Children's hospital facebook page
The Support Baby Doe Group Page

It's Coming on Christmas...

It seems like this past week....past month really, has been filled with highs and lows. Its been a kaleidoscope of ideas and emotions keeping me from focus and reality. It generally happens when my children are sick, but it seems worse this time round. Seemingly more than usual I am having trouble making sense of the world around me, my circumstances and life in general. I find myself disorganized, thrown off by the smallest change, tossed into a tizzy of emotional chaos. But here is the odd thing - right now, aside from Ella's epic flu bug, life is good. I am so grateful for the friends that I have both here and away. Our life is anything but dull.

So let me take you through some of the highs and lows...and maybe you will get what I mean. And I'll insert cute pictures to lighten the lows.

LOW-So Ella has been sick. She ran a fever for 6 days (not your run of the mill 24 hour flu). Through it all, I wasn't overly worried, it was very flu-like (as opposed to Jakob's epic sickness which lasted from May to August and ranged from low-grade fever to strep throat...twice.) But it did get the wheels in my head turning - which is never good and of course it went straight to leukemia. Up to this point I have no reason to believe Ella might have L** but her sickness brought to mind her medical history, how she has been sick far less than her perfectly healthy "normal" brother, and how at her one year check up, they did a Thyroid test but didn't get enough blood to do a CBC (standard for the one year lab work). They didn't do a test that had been requisitioned by our very capable Doctor who made sure a req was put in before he moved away. And since, he moved away nobody seemed to care enough that it got done correctly. Needless to say, no CBC and a child who just happens to have Down Syndrome and has a much higher chance of suffering from such disease. You see my issue. So finally, I take Ella into the new Doctor, who is very nice to silly woman bringing her child in with standard flu like symptoms and he humours me with a new req for a CBC. That was Friday - probably won't hear anything until Monday or Tuesday.  No big deal, no change from  two weeks ago when I was perfectly fine with the fact that the CBC hadn't been done when it should have.

HIGH- Yesterday was inter-racial marriage support group (aka- a bunch of foodies who happen to be married to different ethnicities) and it was MEXICAN night! Home-made Sangria, Homemade flour tortillas, Mexican rice, beans, burritos, churros, flan, good coffee and great company! It was delightful, as always. Good work ladies!

HIGH- We threw today's plans of putting up the Christmas tree and went to the Spruce Meadows Christmas Market instead. I had wanted to go yesterday but poor weather held us back - so today, we packed up the kids and savoured a Christmas memory. They have tonnes of Christmas goodies, live music, Irish dancers, a petting zoo, pony rides and food...oh the food. Bratwurst and sauerkraut, Ukrainian perogies and sausage, strudel.... Well worth the drive.

LOW- We were supposed to go to a birthday party tonight but Ben had been the one corresponding with the organizer. We drive past the Arts Academy surrounded by cars and I ask what time it starts. Ben finally calls organizer to find out it starts....NOW. This is at 5:30 when we pull into our drive way....Did I mention we are singing at this birthday party....did I mention we hadn't practiced.

HIGH- It was a really great party! There was babysitting, good food, old friends and a bunch of guests performed musical numbers. I wish I had been in better spirits to begin with.....

LOW- Check facebook when I get home to find out a DS baby had been abandoned at a hospital in Arkansas. This kills me.

So there you have it. Seems simple enough when I type it out and yet there is more to it. There is an internal struggle that causes me to question if God is trying to speak to me and I am not listening. I really don't know. We are approaching a time of transition which will reveal itself in due time so perhaps I will be a little overwhelmed with life until then. And in the meantime, I just keeping counting the many blessings in this one beautiful life.

Two Loves...

I have many loves and one of them is the country of Ukraine. This country is fighting hard to overcome the reign of communism. The people are open and passionate. The landscaped is breath-taking. Their culture is rich.
Another love I have is for the forgotten children of the world. You've seen the Reece's rainbow badge on the side margin. They fight for these children, they fight to find them homes to rescue them from death in an institution. What do these loves have to do with each other?

This. and This. It breaks my heart. Read, pray. This is Emory- he needs a home

The Hats I Wear

I wear many hats in any given day. There's the mom hat of course and today that involved holding my baby girl with her 100+ temperature. Still sick. I thought she might be getting better yesterday but today after refusing breakfast she went to bed from 10 until 2:30 and then laid down again just after 3 and didn't get up until about 5pm. She was miserable. I was ready to take her back to emerg after dinner when out of the blue she perked up a bit and actually ate some dinner. (All she has eaten in the last 3 days is a little toast, some rice and milk). It was probably the cuddles with daddy that made things all better. We'll see what tomorrow brings.

Ella even had enough energy after dinner to practice a little piano. And since Jakob doesn't like having his picture taken this was the best I could do.

Another hat I wear is that of Worship Coordinator at our church. Today, I finished up the readings for Advent or at least the first drafts and I am so excited. We are re-instituting the Advent wreath this year after a little hiatus.  When we didn't do it last year I was somewhat appalled and insisted that it is a vital part of the church year and adds to the corporate worship experience during the Advent season. I couldn't find readings that suited our congregation however. You see we are evangelical, non denominational and a little scared of things like "liturgy", so I needed readings that communicated the message of Advent and had sound theology while resonating with each generation of our congregation. I'd like to share the readings with you but am unsure how to publish them at this time, so stay tuned.

And yet another hat I wear is that of an Advocate. I wish sometimes that I had the gumption of others who do a much better job at advocating than I. One of those people is Krista Flint. She is the former Executive Director of the Canadian Down Syndrome Society and she has a new blog. I strongly recommend you check it out. She believes in change, equality and inclusive humanity.
http://inclusivehumanity.com/blog/

one hundred and three...and a half

That was Ella's temperature yesterday. She threw up dinner and then breakfast. Its the first time she has been sick sick. She has had colds here  and there but she has managed to be far healthier than her big brother ever was at her age. Funny? My little weakened immune system designer genes girl. This too is a blessing, because unlike with Jakob...or like with Jakob, everytime my little ones get sick I start worrying about the worst. What if? What if? What if? It's a horrible way to live and reflects a deeper trust issue with God that I have to work through. When I had Ella, I thought to myself Yeah, that would happen to me. I've talked about this before in this post. But regardless, part of working through that trust issue is recognizing the blessings of every situation that I encounter.
Last night I was so thankful for the nurse in Emerg. She was my nurse for a few days when I was in the hospital with Ella after she was born. She was kind, and although at the time she remarked at my "post-partum emotions" (I call them - normal, I think my child has Down Syndrome emotions) she was always very supportive. I remember breaking down when Ella had to go under the lights for her jaundice. She cried and cried and all I wanted to do was hold her. go home. run away. Now, I look back and recognize how blessed I was. How blessed I was to have Ella here in Three Hills, where there is no NICU to whisk her away to, not that anyone would have thought to - nobody seemed to believe me when I said I thought she had Down Syndrome - that, or they just didn't want to say it to my face. But regardless, I am so thankful that she was able to stay with me. That we could work through nursing, bond in the wee hours of the morning and spend time with family and all of my wonderful friends who came to visit.

Ella seems to be doing better today. Her fever is down and she seems more herself (aside from not really wanting to eat and throwing up the only toast she would accept.)

And while, I tell you the woes of my little girl, I am reminded that there are so many other little ones out there that have bigger fish to fry. Keep in your prayers another little Ella who is having heart surgery in Edmonton. A new addition to my dear friends' family just adopted and waiting for a passport so they can bring sweet Evyn home. And all the little children who are waiting for their forever families.

Blessings, Happy Monday!
Krista

Advent and Peace.

The Second Sunday of Advent is Peace. Now, it should be noted that there are many variations of Advent, in that there are a variety of themes which are represented each Sunday. I have just chosen four of those themes.


Peace is symbolized by the Nativity. Anyone that has given birth knows that the actual birth of Christ was probably anything but peaceful, but the images that follow invoke contentment in one’s soul. Joseph stands watch over mother and child among the animals sharing their humble abode. They represent the antithesis of Christmas shopping on Christmas Eve in the middle of a hustling bustling city full of traffic, lights and other such pleasantries.

Teach:

The Nativity represents the Christ’s family. I think this is a beautiful image. Many see power as independent, strong and confident. Instead, God emphasized the need for family. And through this family, he sent a baby to bring peace to the World. I found this concept especially interesting this week as we “remembered”. How do you explain Remembrance Day to a 3 year old. “We are honouring these men who fought for peace.” Do you see the problem here. I opted out of this explanation and instead said that we were honouring the peacemakers. Jesus, is the Prince of Peace and he said, blessed are the peacemakers - those who make peace in our world, our homes, and our hearts.

One person who sought to bring peace was Saint Nicholas.

Saint Nicholas was born in the third century in a village called Patara. Presently, this village would have rested on the southern coast of Turkey. He was the son of devout Christians who were very wealthy. When they died in an epidemic, while St. Nicholas was quite young, they left him a hefty inheritance. Nicholas then, in obedience to scripture, sold all that he had and gave the money to the poor. He was dedicated to serving God and became known for his generosity and his love for children. He was named the Bishop of Myra, while quite young, however was exiled and imprisoned by the Roman Emperor Diocletian, who was known for his persecution of Christians. After he was released he attended the Council of Nicaea and later died in AD 343 on December 6th.

From this account, many stories were created and told. There is little evidence as to what is true or not, however the spirit of St. Nicholas was birthed from his devotion to God and is an example of generosity and peacemaking. You can read more about St. Nick below.

http://www.stnicholascenter.org/Brix?pageID=23
http://www.cptryon.org/prayer/adx/adnick.html
Create:

Instead of decorating a gingerbread season this year, create your own nativity. It can be made out of a gingerbread type cookie, cardboard, or even wood. Shredded wheat makes a great roof! Then each day of advent, instead of buying a cardboard advent calendar filled with cheap chocolate, put one more piece of your advent scene in its place. A sheep, followed by a cow, followed by some shepherds, angels, Wiseman, Mary, Joseph and finally the baby Jesus on Christmas morning.

Connect:

Here in Three Hills, our Church puts on something called Bethlehem walk. We convert an old warehouse into the town of Bethlehem which you can walk through and experience with all your senses. This is a great family activity to walk through the story of the Nativity. Most cities have something similar, like a live nativity. In Calgary, try out the Nativity Pageant which is right outside of Heritage Park.

I also found out that Thriving Families is putting out Advent readings this year. They are readings that will take you through the season of Advent. I encourage you to check them out.
And lastly, on a side note, I have been on the lookout for an Advent Calendar that I can use over and over, and can choose what surprises are behind each door. I finally found one.....at superstore.

Wordless Wednesday: October Catch-up

Well, after an epic week, I am left with little to say. But as I was going through some pictures, I realized that the whole end of October got missed. So here it is - photographic documentary style. Gramp and Omi came to visit in the end of October, as mentioned in this post. We were so glad to have them and miss them already.

They left on Halloween day so sadly didn't get to take kids out. Confession- I do not do Halloween well. I am a last minute, whatever is in the closet kinda dresser upper. Luckily, Grammy keeps us stocked and we just happened to have a Thomas costume kicking around and of course, Ella was an elephant. This is a picture of all the cousins with Great Grandpa.

Other than that, things have slowed down a bit, at least this week. Ella found the TV yesterday, which I thought was so cute. The moment they finally realize, hey, this is cool.



And the Winner is....

Well, I would like to say a big THANK YOU! To all of you who stayed with me through a very long week. I wrote a few articles in our local paper as well and a few people have thanked me for my articles or said, “Wow, it is really great that you are getting involved.” To which I reply, “It is the least I can do.” And it is.


Bear with my disjointed post but you need to understand that as a parent of a child with Down Syndrome if it were not for all the parents and professionals before me, I would be fighting the system to keep Ella out of an institution. You also need to understand that DS changes your life. The things you took for granted with your “normal” children become huge victories for us. I just finished reading a blog, in which the mother was raving about her son who just learned how to pass a ball. Or a mom who’s son just learned how to point to her nose, or blow a kiss, or crawl, or walk, or pull up to standing. After months of intense practice, enormous patience and a lot of hope, victories are won.

Three last questions which I am more than happy to answer.

Lola asked: Wow, I hope someone hasn't asked this question yet but I was just wondering what some of your fears for Ella are as you watch her grow up? And also what are some of your proudest moments with her?

Fears? My fears are that of any other parent - if you read the last post you will see a glimpse of that. Beyond those however, I can only take every day as it comes, and trust that the God that gave her life, will protect her.

And as I alluded to, everything is a victory! Small victories everyday, like signing for milk and food, or pointing to her nose. Big victories like when I look to the living room and see that she has pulled herself up on the hearth. She is continually giving me more reasons to make me proud.

And Beth said: I know that typically DS people are portrayed as happy and optimistic... do you think this is an accurate portrayal, and if so, why is this?

Hmmmm, I don’t think I am qualified to answer this. I can only speculate that when you one has faced as many challenges as them, you learn what really matters in life. They aren’t looking to be the best, or the most popular, or prettiest – they just want to be accepted.

Last but not least Wendy asked: Finally thought of a question - Are there two types of down syndrome; one found in women who have babies later in life and one that can happen at any time, regardless of the age of the mother?

It’s a good question that I fear I do not have an answer for and I am pretty sure no one else does either. Although older women have a greater chance of having a baby with Down Syndrome, clearly, from Ella’s case, we can see it does not discriminate. Did you know, though, that there are 3 different types of Down Syndrome. I had said before that an individual either has DS or not – they have an extra chromosome or they don’t. It isn’t a matter of how badly they have it (which is what people often say to me – “oh, she must not have it very bad.” This statement doesn’t make sense.

But there are different ways this “extra chromosome” manifests itself.

There is Trisomy 21. This is what Ella has. All cells tested had a 3rd copy of the 21st chromosome.

In Mosaic Down Syndrome only some of the cells have the 3rd copy of the 21st chromosome.

And in Atypical Down Syndrome, instead of an extra copy of chromosome 21 there is extra material on one or both of the existing pair. When I tried to google it to check my facts (no comments please) only a few links come up and it is all the exact same excerpt from a case study. But we have a little girl in our pool physio session that has it.

Crazy isn’t it!

Thank you all again for being a part of this very important week. And now for the winner. Psst, I am stealing the photo idea from lola...except she is a way better photographer...

Congrats Kiko....sorry we missed Gyoza night. I'll drop your winnings by sometime this week!
Lots of Love Everyone! Here is to Daylight savings time and the start of new week.

A New Button just in time NDSAW

Look to your right, now scroll down a bit. TADAH! A new button! I would like to give a huge shout out to Adrienne for creating this for us! It's time to connect! Its time to advocate! It's time to spread the word!

Someone, on my last post asked a great question about DS. She said: I know children with DS have therapists to help with their speech. Why does it seem that most of them talk as if they are deaf.(meaning how they sound) Is this one of the many complications of DS, that they cannot form the words properly or is there in fact some difficulties with hearing?

There area couple of reasons why individuals with Down Syndrome have a hard time with speech. One reason is of course hearing. They tend to have very small ear passages and many have hearing problems. The second reason is that they have low muscle tone. We take for granted the muscles in our tongue, cheeks and lips, when those muscles are weak, it makes it very difficult to shape them in the appropriate ways to form specific sounds. And the third hurdle that individuals with DS face when it comes to speech is that they actually often have a different shaped mouth. Some say that it looks like their tongues are too big for their mouths, when in reality, while being related to low muscle tone it is also because they have a much more narrow and high upper palette (the roof of your mouth). Remind me to show you Ella's mouth, next time I see you and you will see what I mean.

Keep the questions coming! There is just one more day to enter to win, so spread the word!

Enter to win here Just leave a comment or question. And the winner of these fabulous products will be announced on Sunday.

Thank you so much for reading! You are playing a huge part in raising awareness and giving Ella the best possible chance at fulfilling her God given potential!

This is Ella at 11 months with her Great Grandpa

Answers-Part Two

Let me begin by confessing that I really should be folding laundry but instead I am excitedly distracted by your questions! It’s like when my husband wants to tell me something about how a bird’s chirp is a perfect triad the same pitch as say, the 3rd bar in the 2nd movement of Rachmaninoff’s piano concerto #2. Really, I have no idea what he is talking about, and perhaps under other circumstances wouldn’t find it interesting and yet ask him to explain anyway. Because Down Syndrome means a lot to me and I want everyone around me to know about it and how wonderful Ella is. So here is round two of Answers.


Mel asked: Just curious if you have had direct conversations with Jakob about DS yet. No doubt it's already a term that he's heard verbalized many times, and as such will you wait for him to ask questions about it or have you already brought it up?

In short, no, we have never had a direct conversation with Jakob about DS (Jakob is 3yrs old). I was asking a brother of an individual with Down Syndrome if he could remember when he realized that his brother had DS and he couldn’t. He said it was just something that he always knew. I am sure there will come a time when Jakob asks the why’s and how’s but I think I am going to let that come in its own time. Because to him, she is no different than all of his friends little sisters and because of this he will be one of her biggest fans.

Rosalie asked: How do people seem to react to her? Are they awkward around her? Do they seem fearful? Do they withdraw? How do other people's reactions affect you?

To be honest, I wonder how many people look at her and say to themselves, “That child has Down Syndrome.” I have no way of knowing because as of yet, there is no reaction. In the nursery at church she is equal, at school she is equal, among friends, she is equal. I know that this, in time will change, but at this point, if I don’t react, other don’t either.

Anonymous said: My biggest question is how much tougher is it to raise a child with DS?

Well, to be truthful, I am the worst person to ask this to. First of all, because Ella has been blessed in so many ways, and there is nothing wrong with her. She hasn’t had bowel problems, heart surgery, tubes, glasses, thyroid problems, feeding problems, no sign of low platelets or leukemia, or any other cause for concern. This is the minority. As I say, we are VERY blessed. On top of which children with DS need intentional parenting. Routine, therapy, exercises –so do I. So we are a great fit.

There are many other stories though and if you glance at my blogroll, there are many (namely the two little girls whose buttons I display) who have not had it so easy. If you want a good cry, just click on one of those buttons and you will see why some fight a hatred for the 47th chromosome.

By the way, have ever read Ella’s story. Recently, someone said that an artist can’t properly process an event or idea until they have expressed it. My medium is words and it’s true –Ella’s story is the outpouring of my heart in a time of chaos. Enjoy.

Answers

Thank you so much for the questions! Many people’s perceptions of Down Syndrome or individuals with DS are based on misconceptions. I asked my husband if he thought that he treated people with DS differently. And he said yes, he said it was because when he was talking to them, he didn’t know what they were thinking and he knew that they processed things differently so was unsure how they would respond. And although this may be true in some cases it is characteristic of individuals that don’t have DS as well, we all process things differently. But in many cases, they process life more the same, than different.


So here are some answers to your questions:

Kmarie said: Beautiful. I heard someone say that they loved having a baby with DS because they get to stay in never land a little longer. I think that is just so perfect - I love that aspect. How do you feel about that?

When you do an official fact post along with a personal story can I link it or post it too?

Neverland? Have I loved that Ella barely cries? Yes. But she has been very alert since day one. Her bright blue almond eyes have watched my every move from the moment she opened them. Will she always seem to process the world through the eyes of a child? I hope so and I hope that can learn from that.

Red said: I would love to meet Ella, we have had a brief encounter when she was 6 weeks old & I'm looking forward to another chance to meet/visit one day again. The little glimpses that I have seen in pictures or videos of her and within your beautiful life she has an incredible smile and contagious joy. Does she enjoy music? Do people treat you & Ben as her parents any different when they realize she has DS?

She loves music! She loves make music as well as listening to it. We spend over 6 hours in the car together every week driving to and from Calgary and the radio is always on CBC. I am hoping that by the time she is 5 she will be well versed in all types of music. From Bob Mackowycz in the morning, playing anything from Joni Mitchell to U2 and the brilliant Julie Nesrallah on Tempo, which is all classical music.

Yes and no to question number two – people don’t really treat us differently, but especially at church, people will always tend to put a hand on my shoulder and say, “How is your special little girl? She is such a blessing”

Kiko said: Because of the fact I have been involved in working with persons with disabilities most of my life, we have had unique opportunities for my children to have interactions with people with different disabilities. I have always just immersed my kids, introducing them by name, just treating them like any other one of my friends. My kids have always been very open and enjoyed meeting my friends who live with disabilities. and I do believe whole heartedly how much they bless me and how they are wonderful part of our life and community. I am coming to the point though that my kids really want to know.....after understanding the wonderful things about people with disabilities, they really want to know about the uniqueness of the disability. I am not worried about if it may change their perception because my kids know them as friends. Maya asked me about DS the other day and what it is. And we have had discussions like above but now she really wants to know all the medical details and facts about DS and other disabilities. It's inevitable I suppose because of my career choice, but I had a hard time finding words to explain to a 9 yr old. I have taken seminars on DS etc, and I know all the facts, but I had a hard time explaining....hmmm What would you say to Maya?

Here is what I would say to Maya:

Most people have 2 apples, 2 oranges and 2 strawberries and it makes a wonderfully tasty juice blend.

People with Down Syndrome have 2 apples, and 2 oranges but they have 3 strawberries. So their juice is also wonderfully tasty, but has more of a berry flavour.

And if she is too smart for that, read this post to her.

Claire asked: I guess what I want to ask is, how can I (and my family) support you and other families that have a child with DS? What can we do to help? How can we get involved in raising awareness?

And then Christine asked: What can we do to support families who have someone with DS? And are there unintentional things we might ask or say that are offensive or unsupportive?

Okay Claire and Christine, I am going to let you in on a little DS secret. When somebody says to me, “Oh, I knew someone with Down Syndrome and they were just so sweet and joyful.” (and it happens often) I diplomatically smile and nod but really I want to say, “That may or may not be true and quite frankly, I have bigger plans for my daughter than being sweet- that’s what tootsies rolls are for.” So how can you help? Treat people with DS with all the same respect and intellect that you would treat anyone else. They all may appear to have the same cover, but the book contents are completely different. Did you know that some individuals with DS are married, have jobs and live completely independent lives? Practically speaking, if you know a family with a child with DS, rest and understanding is huge. We are investing 24/7 like other parents but in much more intentional ways – surgeries, therapy, exercises, speech, ot, physio, the list goes on. Those around us need to know it is a major part of our lives and it isn’t going away so we need to talk about it....a lot and we need time to rest. Financially speaking there are many ways. The CDSS acts as Canada’s number one voice for individuals with DS. They fight for inclusion, equal opportunities and advocacy. Local organizations like Ups and Downs, provide community and education to families in their areas, and an organization like PREP focuses on education, speech and occupational therapy for kids with DS. All of which need financial support. Another way, is Reece’s Rainbow. DS kids need families to love them! And give them the support they need, but most of these kids are institutionalized by the age of 4. You can sponsor a child, which adds to the grant available to the parents that adopt them. See their Angel Tree on the side of my blog.

Motherofangels said: So have my own child with DS I don't have to many questions regarding that. But... at what point did you realize having a child with DS was actually a blessing?

I don’t know....and to be honest I think it will be an ongoing discussion in my heart. ...nope, even now, I can't think of when or why.

Ruthie said: Krista, what do you find the biggest challenge in day to day living that presents itself because of Down Syndrome?

I'm sure most health issues are like this... unless you walk it you don't really know it. What are the challenges that might surprise us who don't know?

Ruthie, we are very blessed. And I recognize this and remember it every night as I pray for Ella. Ella has gotten through, thus far, unscathed....but perhaps one of the biggest challenges I have, and I know you can relate, is the fear of the unknown. When Ella was first born I read a book called Babies with Down Syndrome. It went through and talked about all of the things that are MORE likely to happen to your child- Epilepsy, diabetes, leukemia, low platelets, GI tract disorders, the list goes on. But remember telling these percentages to a person who had a 1 in 1300 chance of having a child with DS to begin with, doesn’t mean much. And I will tell you what the Elephant in every home with DS is – chances are, as Kelle put it, you are going to hold their hand before they hold yours.

But is because of this, because of all the challenges they face and the hurdles put in their way, the little victories are all the more beautiful.
And I leave you with this thought:

95% of pregnancies diagnosed with DS are aborted. What would the world be like if all of these beautiful babies were birthed with joy, and as children coloured our classrooms, as adolescents fought the stereotypes and as adults shaped the world?

Here we go! A giveaway for National Down Syndrome Awareness Week

Yesterday marked the start of National Down Syndrome Awareness Week in Canada. A year ago, I awkwardly posted on this same occassion on celebrating being. Ella was 5 months old and I hadn't quite found my way in this world called "Down Syndrome". But I have since, had a chance to sort through the books, pamphlets, therapy, organizations, and thoughts and I am starting to find my voice. I am starting to see the role I can play as a parent and an advocate. Down Syndrome is tricky, because it isn't consistent beyond the extra chromosome, and individual symtoms affect some and not others. And although it doesn't affect the same number of people as say, cancer it still  needs attention. Why? Because as a parent I want Ella to grow up having people recognize the other 46 chromosomes, giving her equal opportunities to learn, work, and grow. I want her to have access to the therapy she needs and the treatment she deserves.

So this week, I am going to do what is within my capabilites and post about DS to bring about awareness. What do you want to know? What questions do you have about DS or about Ella (I'm not talking about what she had for breakfast). Post a question and you will be entered to win a Kiehl's Baby Gift Package donated by the new Kiehl's store in Chinook Center! I love these products for my kids and they make a great Baby Shower or Christmas Gift. I will draw a winner at the close of NDSAW on November 7th.

For now, I leave you with a story featured in the book "Lightness" written by a new friend, Deanne Frere. The baby she is talking about is Ella. And you know what, although there are still somedays that fear grips me, the saddness has been replaced by and overwhelming sense of thankfulness. I am thankful for Ella and thankful for all that she adds to my life. Enjoy.

The Wisdom of Wyatt

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The best conversations with my six-year-old son Noah often occur over pancakes at his favorite restaurant. The topic was Down syndrome; not unfamiliar territory as his four-old-year brother Wyatt has DS. After I explained that when parents find out their baby has Down syndrome they are sometimes sad, he asked “Why were you so sad?”

I had to think hard about why the diagnosis seemed so daunting and I said, “I guess because I knew it would take Wyatt much longer to learn to do things.”

Noah took a sip of water, then looked straight at me and said, “Mom - what’s so sad about that?”
Indeed - what’s so sad about that? I was speechless, relieved and proud beyond words. “Not one thing Pal,” I said as I watched him consume more pancakes.

He continued by listing things Wyatt could do; all the skills cherished by a six year old, like wrestling, or roaring like a T-Rex, or coloring with his big brother. Noah had learned to focus on the abilities his brother has, when so much focus is often placed on his disability. What an amazing gift to be given at such a young age. I wanted to run home and write this new mantra on my fridge or get a T-shirt made up ...“What’s so sad about that?”

My new mantra came to mind the next week when an email arrived from a friend titled “in need of advice,” as a family in her church had just received the “life altering” news their daughter has Down syndrome. Yes, I thought, Wyatt has altered our lives, and yet mostly in ways I never would have imagined. I did not know Wyatt would be born with DS, but I also had no idea he would be born with such incredible ice blue eyes, or that he would grow to have a voracious appetite for books or that he would open corners of my heart I never even knew existed.

After Wyatt was born, and the diagnosis seemed overwhelming, I began to question our family’s plan to adopt an African orphan. This time it was my husband who revealed the wisdom his second son had bestowed. He said, “Wyatt has showed me that every kid, regardless of where they were born, and what issues they might have...they all just need love and a chance to thrive.” Thanks again Wyatt.

I started typing a response to the email. “Let your friends know the sadness will fade,” I wrote, “tell them - do not worry that she will not learn, but open your hearts to what she can teach. Tell them to expect to be dazzled by her accomplishments and by her capacity to bring them joy in the simplest ways. And tell them, yes - your life will be altered forever.”

What’s so sad about that?

Not one thing.



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