A Glimpse Into My Life As A Musician's Wife.

I had written a post. It was amazing. "Some of your best work yet" my husband said. I wanted to save it and publish it this morning, being Monday, because it is bloggy rush hour and I knew it would get a lot of traffic but when I went to post it, it was gone. Not the post itself, I couldn't have deleted the post because the title was still there but the content...not a word. And blogger autosaves! I have no idea what happened but when it wasn't there, I got  teary eyed. I felt like Hemingway when all of his manuscripts were stolen off a train except that no one stole my one petty blog post, which had no potential for monetary compensation and now I have no motivation to try and re-write it. The moment has passed. It wouldn't be as the same. It wouldn't be as good.

But do you know what I thought after I was sure that it was gone? I want to write something that is worth losing. It was just a blog post about how strange my life is. It wouldn't have made me any money, made me famous or otherwise enriched the world at all. I feel so small and insignificant and I feel like my writing is trivial. Losing my post made me realize just how much I want to write something that I would consider a great tragedy to lose. Something really amazing, life-changing, paradigm shaking.....maybe one day.

Thoughts on "Bloom"

This morning I sent Ben off to take Jakob to a birthday party, I made myself another cup of coffee and finished Bloom: Finding Beauty in the Unexpected--A Memoir by Kelle Hampton. It was important to me that I buy it and read it not only to support Kelle, who I view as a sister in this big DS family but also because she is, whether she knows the impact of it or not, the present voice of DS Mommas. She has the ability to speak and be heard by many, raising awareness and showing the world how wonderful a life with designer genes can be.


Let me begin by saying, Kelle has produced a very aesthetically pleasing book filled with many of her beautiful photographs. Her writing style stays true to her blog, which could be a good or bad thing depending on your own preferences. And while it is not the genre I tend to be drawn to, it definitely resonates with the larger population of Mommas who read it. She has written out her story beautifully, a story which a lot of people find themselves in. But note, I am not going to try and push aside my feelings towards Kelle in my review of this book. I read it with all of my own preconceptions from the journey we have had together for the last two years whether she is aware of it or not (which I am pretty sure she is not, as I have never met her nor conversed with her).


I remember the first time someone sent me the link to her blog. Ella was already 8 or 9 months and I too had blogged my journey. So when I read her story, I hesitated before adding to over a thousand comments to welcome her to the DS family. But I did. Because, just in case she read it, I wanted her to know it was going to be okay. If I had known her feelings towards "support" at the time, I probably wouldn't have offered a hand but I did and I put a link to my blog to say you're not alone. Our kids were about the same age and probably like hundreds of other moms out there, I thought maybe she would find a connection and a comfort. I think she was already too big for that though. Regardless, I began to follow her blog, like I do many other DS mommas and had to swallow my tongue and my pride every time someone sent me a link to her site, which was often.


Kelle and I are very different people even though many of the circumstances and events in our lives are so similar. We both come from broken families where the church took sides and we, as kids were caught in the middle of a manipulative game. We have families that have taught us to love despite mistakes, misgivings, sexual orientation and pressure from those we trusted. The first chapters of Bloom couldn't make our differences more evident. I was captivated by her response to Nella. It was completely foreign to me and I while I felt my throat tighten as I read of her first night, the gut-wrenching pain that she spoke of was something I knew very little about.


Do you know the phrase, What doesn't kill you will only make you stronger? I hate that phrase. But now thinking back on it, I guess it is true. My life has been through many valleys. A friend commented on the last part of Ella's story, that she cried when she heard about Ella: How could this happen to my beautiful Krista? Hadn't their family been through enough? I won't go into the details but lets just say there has been major refining in my life. This refining I cursed at the time, but perhaps it was the reason that instead of crying out "WHY ME?!", I thought quietly, of course, me.


I have never had a "perfect" life at least not in the way society views perfect, so unlike Kelle, I didn't feel like I was losing out on anything when Ella was born. And when looking at this book as a whole, I think that would be my biggest disappointment: Kelle spends more time talking about herself, how she would accept the challenge...that she has been given lemons but with her incredible attitude and strength will make lemonade. Instead, I saw Ella as a gift. A precious gift that I had been entrusted with from God and he would give me the strength and grace to raise this child. And this, my friends is what our differences hinge on. While Kelle talks about God and even believes in God, He plays a very different role in her life than mine. She knows the lingo, she was a PK (pastor's kid) for goodness' sake but there is a serious disconnect and relationship that needs to be mended there.


This brokeness shines through in Chapter Nine when she talks about "God-spinners".

"And so I pictured myself, on a hill, fist raised to the thundering skies shouting to it all - to God, to the Universe, to Coincidence, to Science - "I see your challenge. I accept. I accept. I'll show you how I can do it. You have no idea just how I'm gonna rock this out."

That being said, I know she is not alone and many of her readers probably praise her for her honesty. They can relate to being hurt by the church. Its a common and complicated problem that comes from having finite sinners as the representatives of God here on earth.

There is a lot of growth that goes on between chapter six with her stories of getting completely wasted, skinny dipping and walking home stark naked and chapter 11 when she starts to sober up. After that, I can relate a bit more, and isn't that what so many people are looking for in reading this book? Hoping to find something they can relate to? Find out what the secret is to the courage, hope and optimism that Kelle seems to emanate?

From Chapter 11 to the end of the book she recognizes that she has been handed a torch. Whether she wanted it or not, she graciously accepted it and did as she says, faked it until she could make it. She was made a leader, or maybe always was and when you are a leader, sometimes, even though you are not completely convinced in your heart, you know what is right in your head and so you are bold and carry on. She maintains her personal touch and it sometimes resembles more of a Grad yearbook write-up than a New York Times best seller but I think she always knew she wasn't out to write a textbook or a self-help book, just one person's story, her story and that is why so many people love it, besides, we are a blogging generation.

In the last chapters, that inward focus turns outward as she talks about the Buddy Walk that she said she would never do, but raised over $6000 from, and Nella's Onefunder that raised over $100,000 all for the National Down Syndrome Society. I have watched her blog grow, and seen her attempts to connect with her thousands of followers. And despite my honest opinions on some of the shortcomings of the book I have to applaud her and recognize that she has faced a huge learning curve with grace. She has come a long way from the first negative feedback she received via Enjoying the Small Things to now, when I am sure, people feel much less hesitant about telling her when she has said something wrong. 

Taking it beyond the book, I am pretty impressed that she has been able to maintain the essence of her blog since the book was released, considering her life is probably full of emails, writing, PR, etc. I often wonder if she has since gotten herself an assistant. We'll see what the future holds for Kelle Hampton. 

Now that you know what I think, why don't you find out for yourself. Long story short, I accidentally ordered two. So just leave me a comment or email to let me know and it's yours.

Mothering a Child with a Disability: The Secret Thoughts on Speech

As a mother of a child with a disability one of my greatest goals is to raise awareness. With 94% of women aborting pregnancies diagnosed with Down Syndrome I believe that if women only knew what a joy raising a child with Down Syndrome is, then maybe they would see in their womb, not just a life full of challenges and hardship but instead, a life worth living.The risk in this however, is that I write less for those who have chosen life, and while sharing the beauty of everyday with an extra chromosome, I fail to bring light to the inevitable frustrations and fears that are also part of life...every life. So last night when I spilled to my DS momma friends that  I was frustrated with Ella's progress in the language department, I was called out on my fear to blog about such things. What if there are other mother's out there feeling the same way I do but are afraid to say anything? And like me, they just need a little validation and encouragement. So here it is....

Lately, every time a momma posts about their child's new word or how they call "Momma" from their crib or make animal sounds, basically anything speech related, my celebration with them is overshadowed by sadness. Not a tearful sadness but more like a grey cloud that lingers blocking the sunshine because I wish I could post the same about my Ella. I wish I could share a video on Bragbook displaying her latest and greatest language skills and prove to the world that she is defying statistics and is developing "normally" despite her diagnosis. When in reality, the gap is widening and development is so slow and I am becoming frustrated. Ella will be three in June, but if anyone asks, I say she is two and a half because I am afraid. I think that they think that she is younger because she doesn't talk and for some reason, I actually believe that people might not think that she has Down Syndrome.
And when I say she doesn't talk, what I mean is that she doesn't say words. She babbles and has her own variations on phrases but probably unrecognizable to anyone but Momma, who, in reality, doesn't have a name. Mothers! never complain that your child says "momma" too much and if I ever do, slap me and then remind me of today, when my heart is sad that my baby girl doesn't call me by name or anything else for that matter. Jakob is the only one that she has a sound for and it takes the form of "Ob".
But here's the kicker. She can make the sounds. She says "ma" often in her babble but when asked to say "mama" she blows a kiss and when asked what sound a cow makes, she gives a glottal roar....the same for every other animal.

In other areas Ella is doing well. Her receptive language is moderate and physically, I can't keep up. But speech, to me, is huge. I feel like it is a key to acceptance. Perhaps it is because, for myself, when I speak to a person with Down Syndrome and they respond with articulation and clarity, whether it be true or not, I feel that somehow it is a reflection of intelligence....now before you go and slam me for saying that, realize I am just admitting to my own stereotypes which, guess what, don't completely vanish the day you have a child with DS. So naturally, I feel that if she can speak well then she will not be judged as much, and will not have to work so hard to earn the respect of her peers and society as a whole.

But here is what I have to keep reminding myself and what so many wonderful ladies have reminded me of: these frustrations, these hardships, these hurdles only make the victories sweeter. It will come. It may not happen the way I want it to. We may have to work our butts off every day for YEARS but it will come....In His time.

One thing is for certain: the girl has sass.

For the Moms Out There

Home, Bloom And My Baby's Blues

On Tuesday, it will be exactly three months until we fly "home". But where home will be, is still unknown. 

Ends are a different reality when there is no beginning to look forward to and this is the case for us. There is the lingering fear that come the end of July we will be unemployed and homeless…again. While we have a plan B, we hope for the best. We hope for opportunity, and we hope for a place that we can call home in a community where we can make life long friends, where my kids can make life long friends and where Ben can thrive, personally and professionally. I dream of a house that can create memories, facilitate gatherings of friends new and old and be a sanctuary. A place we can call our own- make our own.

I try not to invest too heavily in any prospect for fear of disappointment but it's hard and I have to catch myself picturing the moving van pulling into the house I have already scoped out and picked paint colours for. Then other times, I feel peace and I know it is because of those who pray on behalf of our family. So thank you, whoever you are.

We have always taken the road less travelled and at times, it can be lonely. I am understanding this even more as I read Bloom. I will write more about it later but let's just say, while Kelle Hampton has produced a beautiful book that has and will touch many people, she and I are very different people and sometimes I need to remind myself that that is okay.

Living in England has been very liberating for that reason. I am free to be who I am without judgement. I am moody and introspective, I prefer tea and a good book to dance parties and beer and I didn't wish Ella away when she was born, I didn't feel she stole any happiness and I didn't sob but then again, I didn't have hoards of people visiting me and don't have thousands of followers, so what does that say? So much... which maybe I will share about... one day.

Lots going on. Lots of thoughts. Lots to love and be excited about and lots of fear and insecurities too. A bit heavy for a Sunday night but tomorrow is the start of a new week. Jakob goes back to school and Ella has an Opthalmology appointment followed by Early support and the Paediatric Orthopaedic clinic on Tuesday. 

Aaahhh, routine, I find comfort in the constant rhythm of life. How about you? Do you find comfort in routine, or do you find it suffocating and confining? What beauty are you looking forward to this week?....besides these beautiful blues of course :)

Springtime in Paris

With the big touristy stuff behind us, I wanted to take Wednesday and Thursday slow, soaking in the City of Love. Like every other day, Jakob wanted to go play in the playground beside the Eiffel Tower, so while Ben took the kids, my brother and I took some much needed sibling time. I prayed with all my heart the rain would hold off until we were done coffee, and it did. Praise the Lord.
On our way back I found a little pail and shovel, perfect for Paris' many sandboxes.

After Jakob had tested it out, we headed over to Concord and to one of the three Ladurées in the City where we met my mom for Omlettes, tea and of course, macarons. It was all wonderful until it was time to leave, and while catching a glimpse of himself in the mirror, Jakob fell down the stairs acquiring a nice little shiner as a memento from his trip to Paris.

That afternoon, despite the torrential down pours and erratic weather Ben took the kids back to the flat and my mom and I spent what time we could bare on the Champ-Élysées. This, however, was short lived, and we passed the evening listening to the rain beat on the Paris rooftops.

Friday: our last day.
I sent Ben out Friday morning to spend some time on his own at the Louvre, while the kids and I went back to the Eiffel Tower. The original plan was to go for a boat tour that morning, but once Jakob saw the playground, that plan was out and the sandpit was in. This was perfectly fine with me and I could not think of a better way to spend my last day in Paris.

Once Jakob had a good play, he was ready for the boat. So after we all met back up at our favourite playground, we left my mom and Wayne and went on a three hour tour....okay, it wasn't three hours, and we didn't get ship wrecked, but instead it was rather lovely. (this was just one more thing included with the Paris Pass)

The day only got better, as we got off the boat and headed towards Saint-Germaine. On the way we went through the latin quarter, first stopping for ice cream.

Then, stumbling across a Canadian Bookstore.

We wandered where we wanted, enjoying the sunshine and the freedom in the Paris I knew and loved. We visited Wagner's old stomping ground and I went window shopping in one of the many cookery shops. It was the perfect day to end a wonderful week in Paris. Until next time, A bientôt, bisous.

Paris Day Trip: Versailles

They suggest not travelling to Versailles on Tuesdays because it is not open on Mondays and can be quite busy - True story. Like everyone else however, we ignored the suggestion and thought Tuesday would be a good day because a.) we had the Paris Pass allowing us to skip the queue anyway and b.) My mom wanted to be able to use her second instalment of the hop on hop off tour which comes with the Pass for Wednesday and Thursday. But let me tell you, it was busy and probably something I would not choose to do again unless it was low season. That being said it is VERY beautiful and quite a sight to see with all the grandeur of King Louis XIV and later, Napoleon Bonaparte. The huge palace and pristine grounds are home to some very significant historical events, not to mention the artwork.

A note about "Tours" should you find yourself thinking about going on this easy day trip:
We, ourselves had originally booked a tour through Viator.com at the exorbitant price of $119 per person. This was to include travel to and from Versailles and a gourmet picnic lunch along the River. We later cancelled, however, because they wanted to charge the same price for the children who would have been free to enter any of the attractions as well as on the train, and unless I got to drink their wine, I am pretty sure would not have eaten their money's worth on the picnic. After researching a couple of other tours we decided to suck it up and navigate our own way, which, was turned out to be completely easy and stress free. We were able to catch the RER (train) from Notre Dame and because it was one train there and one train back filled with hundreds of other tourists going to the same place, there was no mistaking where to get off. From the train station it was a short walk to the Palace. Again, the Paris Pass came in quite handy as it began to rain once we got there and were able to quickly get in line to enter as opposed to having to wait in line for tickets.
Speaking of rain, I was also very thankful we didn't go with the original tour because there was no way we were picnicking along the river in the rain (it was a nice thought)....we went to McDonalds instead :)

Paris Day Three: Croissants, the Louvre and a little Opera

Do you ever find that it takes you almost as long as you were away for to recover from a vacation. Suddenly your head hits your own pillow and you realize just how tired you really are from go-go-going. Yup. That's me. I have a Paris hangover. 

No hangover is going to get me down though. Tonight I finished editing all of my photos from Paris and saving them in their various forms to not only share with you, but also make an album of memories. I want to remember but more than that, I want my kids to remember. They are so young and might forget, but I can only hope that they will read and re-read the memories and think about how it shaped them, and say, "I saw that" "I was there" and "what a wonderful experience and I am a better person for it". Too optimistic? Maybe. But doesn't every parent hope?

Monday.

The sun was poking through Monday morning so my Mom and Wayne (her husband, not to be mistaken for my Dad of the same name) hurried off to the Eiffel Tower while Ben and I slowly headed in the same direction with the kids.

We stopped for coffee and a croissant, which may be my favourite thing to do in Paris.

We walked down Rue de Rivoli, past the Louvre, and then into the courtyard, where, Ben decided he needed to use the loo. Now, anybody planning on travelling to Paris with children, listen closely. My mother graciously splurged on The Paris Pass. It's not cheap, but this pass gets you into many attractions for free, it can include a metro pass, and occasionally, you can skip the queue...like at the Louvre. BEST EVER. One of the guide books I glanced at said, "I have never seen a child under 12 happy in the Louvre". And this is probably true, because after just one wing, I am pretty tired too, but with this pass, you can get in quickly and come back as many times as you want. Jakob even ASKED to go back.

The Louvre- YOU CAN DO IT WITH KIDS! 

From the Louvre we walked through the Jardin des Tuileries. The flowers were in full bloom and even though, for some strange reason, none of the vendors were able to provide du café we did manage to find the playground. We continued to walk along the Seine, enjoying the sunshine and ended up at Relais de l'entrecote for lunch, just off the Champ-Élysées on Marbeouf. I read about this place on the Hip Paris Blog. All they serve is steak and fries but as they say, when it is this good, you don't need anything else.

I don't think we ever did make it to the Eiffel Tower that day, but that's okay, we saw it from afar. Instead we made our way back home and Ben and I got ready for our date.

For Ben's birthday, I had bought tickets to see Don Giovanni at the Bastille. It seemed completely necessary to see an opera in Paris, after all, if not in Paris, where....Ben later informed me, Italy. Whatever. 

It was quite a spectacular modern interpretation of the rather debaucherous story, set in a modern day office building. It was a bit of a mind exercise listening to Italian while reading the French subtitles but in all honesty, it was breathtaking. The voices were amazing and the musicianship incredible. It was an experience I will never forget.

Sunday Markets and the Eiffel Tower

Sunday, we meandered our way back down to the Louvre to catch the tour bus but not before stumbling across one of Paris' many markets. Just like at home, this was a great opportunity for a mini language lesson

Sunday was also the Paris Marathon, wreaking havoc on traffic, which was fine by us, since it gave an alternate tour around Paris. But we headed in the direction of the Eiffel Tower and ended up at the Trocadero easily crossing the river...and the Marathon, to the Tower.

Not only was Jakob determined to see the Eiffel Tower, but he was determined to climb it. So after a picnic in the park my mom and her husband stayed with Ella while my brother, Jakob and I climbed the 680 steps to the 2nd floor.

Once we made it to the top, we let Jakob pick out a souvenir from the gift shop. What kid doesn't love a snow globe?

It was a very cold day in Paris and even colder the higher you go, so once we got our feet back on the ground we set out to find some coffee and leisurely our way back to the flat.

but not without stopping for some pastries for dessert :)