Ella's Story - starting again..... from the beginning: Part Three

......Only Ben gave me any consolation. He went home and did what any parent would do. He Googled it. When I think about how little I knew about Down Syndrome when Ella was born, fear seems like the most logical reaction. He listed the symptoms: Brushfield spots, Palmer Crease, flattened bridge, button nose. She had them all.

And while he tried to keep hope and tell me that it all may be a coincidence, I knew. 

Some cry a gut-wrenching cry, many weep for hours on end, but I have, my whole life been conditioned to be strong and, whether it be right or wrong, keep my feelings to myself and be the voice of reason. When my family fell apart as a child, I kept calm and carried so on the third day, when my doctor finally told me that he had had the same thoughts independently, I kept steady. I asked without wavering what made him think she might have Down Syndrome. He didn't know-maybe the eyes. I could tell this was as hard a moment for him as it was for me. Ella was his first patient to have Down Syndrome and throughout the delivery he just kept saying that she was a healthy beautiful baby girl. 

The thing about a small town is that everything is personal and the guy who fixes your sink isn't just your plumber, but your neighbour, and the arms who help your baby into the world are not just those of your doctor, but of your friend and I often wonder what that night must have been like for him. Did he think about it? Did it keep him up at night? Did he tell his wife? How was he going to break the news to me that he too, thought that there might be a chance that Ella had Down Syndrome and if I hadn't said anything, would he have?

But there it was. A referral to a Genetic Specialist at Alberta Children's Hospital.

Ben's parents and my mom accompanied us on our first outing with Ella. She cried for most of the hour and half drive to the city as I sat next to her in the back seat cheek to cheek and I told her it was going to be okay. It had to be okay.

The doctor welcomed us into an exam room and began to get a bit of our family medical history - no history of genetic disorders, no toxic exposure, overall, healthy parents with no apparent signs of disease. The doctor, in her gentle way, said that usually, after physically examining a child, she could say 90% yes they had Down Syndrome or 90% no, they didn't. In our case, she could not commit either way. While Ella had many of the physical signs, she had very good tone and was very alert. As a result of her uncertainty, she requisitioned for a chromosome count.

I think throughout the whole process, this was the hardest moment for me. I knew, I knew that if she could not tell me no, then it was yes but she would not say it. I cried silently, tears streaming down my face as we finished off the meeting and as they took blood from my perfectly content baby girl. The tears came as we ate lunch and drove home. The tears came and they didn't stop because I knew and yet, I seemed to be the only one.

Finally, after what seemed like an eternity, on June 23rd, when Ella was just 2 weeks old, we received the call, confirming that Ella had 47 chromosomes instead of the normal 46.

Why am I re-writing Ella's Story? 

When I would re-read time and time again my first account of Ella's story which you can find here, less and less of it seemed to be important. When I wrote it, I was in the mode mentioned above - strong, stoic and in control. I wrote to inform family and friends of the process that we were going through and what the logistics of such a diagnosis looked like, but the reality is most people who read Ella's story now don't need to know what the process looked like for me (because it is different for everyone) but rather, they need to know that what they are feeling is valid and more importantly, that everything is going to be okay. Because it is and it will be. This has been a stretching practice for me as I have tried to recount each moment and, this time, feeling, of Ella's diagnosis. Each and ever tear is a testimony to God's grace displayed to us through Ella. She is an amazing little Girl, with an amazing Heavenly Father and I hope our story will bless many people.There's more to come, but for now, Thank you for reading.

A Seaside Retreat in Aldeburgh England

Raise your hand if you have been to England but not to the ocean. I know, right? It's this tiny little island and yet the coast seems so far away, at least to us without a vehicle or sense of direction.
But when a soul needs water, you do whatever is necessary to get there.

I gave Ben a choice, there are two common destinations for Cambridge residence: Wells-next-to-the-sea (not sure how that fits on a passport), with it's quaint colourful seaside cottages and sandy beaches.

OR

Aldeburgh.
It has pebble beaches, boasts of "famous" fish and chips and is home to the late Benjamin Britten, one of Britain's most celebrated composers.

Guess which he chose.

Ben and I specialize in choosing vacation spots that are Geriatric favourites. Aldeburgh is no different, but in all honesty, we love it. It's less busy, often cheaper and quite frankly, when you have a little boy whose face lights up at even the mention of throwing rocks into the water, a pebble beach is the way to go. It was absolutely beautiful and just what we needed.

Do you see the size of rock Ella is throwing: What's that about low muscle tone?

The Beach.

On a whim we booked on Thursday for Friday night at the only hotel that could accommodate us on such short notice: The Wentworth Hotel. It was amazing! We arrived to find a luxury suite with a King sized bed and view of the ocean.

Ella and Ben in front of our hotel

Dinner and Breakfast were included with the special so after some time "at the seaside", as Jakob would say, some ice cream and a little walk around town, we fed the kids and put them to bed. Then get this! We had reception listen through the phone service (like a baby monitor), while we went to the dining room and had dinner. Three courses, alone, you know? Like a DATE! What a treat and something we were not expecting at all!

              

At the Aldeburgh Bookshop

The next morning Ella woke early (4:30am), as usual and decided to climb out of the travel cot. So it was into the family bed. When the sky started to fill with light however, I let Daddy take over and I went for a walk.

...until I couldn't feel my fingers anymore and went back to the hotel only to discovered I was locked out. Luckily, we were on the ground floor, and of course, the kids were awake.
Once dressed and ready it was straight to the seaside first and then to breakfast.

Reading the morning paper.

From there, we went to see where Benjamin Britten and his partner Peter Pears were buried. I always wonder why we visit the graves of famous people (we did the same the first time we went to Paris and had to see Chopin's grave in the Central Cemetery.) It just seems a little odd since we don't believe in prayers for the dead. But Ben assures me it is just for historical significance.

We strolled through town and got some tea and scones at The Cragg Sister's Tea Room. This was probably our best tea and scone experience since being in England.

Earl Grey tea in a blue willow tea cup, fruit scones with clotted cream and strawberry jam.
I could do it all over, right now.

After tea, we walked back up the beach to where we planned on meeting friends for fish and chips. I stood in the queue (line-up) which wrapped around the building for a good half hour and got into the building just as said friends were arriving. When I emerged, the line-up was twice as long. We headed down to the beach and ate, played and laughed. It was really nice.

And while the fish and chips were the best we have had in England, the jury is still out as to whether they are better than Pajo's.

Two of Jakob's friends from school: Another blond half-asian from Australia and a Turkish/Mexican from Texas.
We support inter-ratial marriages: making the world more beautiful one half-breed at time.

Aldeburgh, who knew? It was exactly what we needed.

For more images of Aldeburgh, the full album can be viewed here.

Morning.

I took a walk this morning. 

I slipped out as light slipped in unnoticed.

Just me and the water...and a couple of fishermen.

The way it should be 

The Ocean and I

We keep our rhythms soft and steady. 

There is no obligation for conversation but comfort in 

the waves lapping on the shore, 

the rocks rolling back into the sea, refining 

and my footsteps digging into the soggy earth. 

I hold myself to no expectations of revelation or healing, just breathe, in and out, like the tide. 

I meet God. But we do not talk.

We wait for the sun.

Going home.

At the beginning of 2012 I was posting everyday. I never lacked for something to share nor the time to share it. But there is an ebb and flow that comes with changing seasons and as of late the posts have been few and far between. Inspiration is present albeit slow as we wait with anticipation for each bud to turn into blossom. And it is in these times of change and unsettledness that my soul aches for home.

There are some souls that are meant to be by water. Mine is one of them.
And when the urge comes, there is no stopping it. You find whatever means possible to reunite with the sea and no matter where you are from, no matter what country you call your own, no matter how many miles stand between you and the community you are a part of, home is standing before the ocean's expanse. No matter how chaotic life is and no matter what storms rage around you, your heart and mind find their natural rhythm in the steady lapping of the waves.

Today, we are going to the seaside.

John Knapp Fisher

Today...being yesterday.

I didn't get to posting this yesterday, but better late than never, right?

When I read back over Ella's first hours in this world it all seems so far removed from today.

Today, as I watched her play the piano, as she sang to herself while we walked, as she set to work unpacking my groceries and today, when someone remarked, "you must have your hands full" as Ella, without breath or hesitation went from station to station in a classroom full of new and wonderful things to explore. 

Today, Down Syndrome means something completely different to me than it did almost 3 years ago when I cried, mourning the life I had dreamed of for my little girl. Because I mourned out of ignorance and I shed tears for the things I did not know. But today, instead of sorrow, I know joy and instead of inability I see potential.

Today, I have the same expectations for her as I do for my son- that she will go to school, get a job, go to university, live on her own and maybe one day, if she finds the right person, get married and chase after the life she has always dreamed of. Today, and everyday, she puts my tears to shame and shows me how to live without judgement or expectation. 

Today, the only limitations my daughter has are the ones I and society place on her.

Last year, the UN declared March 21st World Down Syndrome Day.

It is a day to globally recognize people who happen to have something a little extra but who also have to fight daily for their rights as individuals - rights of inclusion, equality and respect.

Because if only the rest of the world knew what I knew approximately 92% of babies diagnosed with DS in utero would NOT be aborted. But how do you get the message across to a world obsessed with "perfection"? 

You redefine perfection.

HAPPY WORLD DOWN SYNDROME DAY!

Life. The Way I See It.

As a photographer, I am constantly trying to find new images to capture in new and creative ways.

But lately,

I have been challenged by this. The odd time, I will allow myself to indulge in fiction and while my mom was here, she bought me, The Paris Wife. It's not that good and no Margaret Atwood. I probably wouldn't recommend it on my 30 Books To Read Before You Are 30. It's rather cliché and probably not very realistic (for a full review, I thought this was a good one.) What it has done however, was get me thinking about writing.

Hemingway is known for his blunt honest approach. He wrote what he saw. He didn't try to dress it up in an unnecessary excess of adjectives but instead, used what he knew and his experiences to fuel his stories.

As an exercise in writing, I think it would be interesting to one day, either here, (or in Paris), to sit...

and watch...

and document...

Write what I see. Have you ever done that?

I am also going to attempt to implement this principle in my photography...to a degree. I feel so restricted by the pressure mentioned above, but what is photography, if not simply, capturing what I see.

I see me. Have you ever thought about how much you see you. We have one 8x10 mirror in our house. That's it. And yet, I look in it every day, probably at least 4 times a day. What do you see?

And I see the world around me.

I love Cambridge for so many reasons. Reasons which I have recently been struggling to articulate. How do I describe how the sun shines off the University Arms across Parker's Piece as I wait in queue with a dozen other cyclists for the light to change? Or the way, the city is always bustling with shoppers, tourists and vendors alike while the bells of St. Mary's ring out across King's parade, echoing off King's College Chapel? Or how on Friday nights the city buzzes with students dressed in their tuxedos and gowns hurrying to high table. I could go on, but you still wouldn't fully know how breath-taking everyday life is here, that is, if you choose to embrace it.

Which, during this dreary season, is exactly what I have been trying to do.

On Friday, Jakob's school had a Mother's Day assembly because here, in the UK, TODAY is Mother's day...how nice that I get two :) He did a great job singing the songs and saying he loved his mommy...."because she washes the dishes and she loves me."
Now you know how I spend my time, and why I don't take as many photos as I would like.

Ben was a little slow getting the memo on Mother's Day however, so I got up with the kids and made breakfast, but this time, Ella was my helper. She did a great job, although, we discovered that her little wrists aren't quite strong enough to pour the cup of milk in.

The weather has definitely been dampening spirits this week, so when the sun came out this afternoon, I jumped at the opportunity. Embraced the stuff life is made of: Sunsets, walks with my family, Nutella crépes. Nuf' said.

This week I want to capture what I see. Not dress it up in fancy filters or fancy rhetoric but see life for what it is. Naked. Honest. Beautiful.

Scavenger Hunt Sunday....from the archives

I have to admit that my little 60D, Audrey, hasn't been making it out much lately. I don't know why. I plan on changing that, but I also hope the weather gets a little nicer as well. Regardless, I am pulling from the archives today. Good memories.

The rules are simple: 

1. Anyone can participate.
2. You're encouraged to take five new photos this week for the challenge. Creativity is also encouraged!
3. If you get stumped, you may use one photo from your archive (although I'm not too strict about it - I do my best to take fresh shots).
4. Link up here on Sunday (or Tuesday at the latest) - you can use the button above.
5. Leave comments for at least five entries around yours (we have so many new participants each week, this is the only way I know to be inclusive).
6. Have fun!

Vintage

This was a Scottish Wedding Dress that I don't think even made it onto my Edinburgh post but isn't it beautiful?

Word(s)

I am longing for the ocean these days. While this little island is small it is surprisingly difficult to get to
water without a car.

Nature's Own

People

The Mill Road winter fair

Photographer's Choice

The resolution is awful, my hand shaky, the light low and yet of all the photos I have taken this year, this is one of my favourites. Taken in Paris, friends gathered around food and wine in a quaint wine store turned restaurant in the 19th, toasting to this One Beautiful Life. I love it.

Next Week's items are sponsored by none other than Marissa over at Confessions of a Young Mama

1. Whimsy
2. Create
3. Dust
4. Seed or Sprout
5. Swing or Drop

Have a great Sunday.

The Update

A long promised update on our little lives.
Let's start with the littlest one: Ella Bella.

Ella has been growing in leaps and bounds since Christmas and I am not just talking about her tummy. She is getting to be such a big girl and I am so excited about her development as of late (I feel like that is a phrase most mom's don't use). We were slightly concerned that Ella's lack of words were due to a hearing problem since the tests she had last year were inconclusive. We went for a hearing test on Wednesday however, and, as far as they can tell she can hear within normal levels at all frequencies. Chances are that the lag in speech was because of her recent major physical development (walking, running, jumping, etc.) Since introducing new speech games Ella has shown a huge improvement in her speech. She makes a good effort to not only to use her signs but also make the animal noises (even if they don't really sound quite right). I have also been noting words that Ella can say and the list is surprisingly large. While some may only be recognizable to mommy, she is clearly making an effort to say them and if you know what you are listening for, they are evident.  Not only that, but she is now making an effort to copy words, something I could never get her to do before. For example, tonight I told Ella to put her pyjama pants on and asked her say "pants" to which she replied, "pnts". She seems to, in most cases just cut out the vowels so that the consonants run together or in other cases, she drops the ending. (Put) Back= Bah.

Jakob:
Lent term is drawing to a close and these past couple of weeks have been action packed. Last week, I went with Jakob's class to the Cambridge University Botanical Gardens to look for signs of spring and today he went to the Central Library: a place we frequent anyway. He is still loving school and getting very good at reading, is completely enthralled with the planets and solar system and can count so well it amazes me- he will look at a piece of paper and without counting out loud will announce quickly and confidently that there are 7 stars. We are longing for the day when we can go to the park after school as we did almost everyday in the Fall but until then, we have, at least once a week been going with friends for hot chocolate and then to the Library.

Ben: Lent term is also over for Ben. The work doesn't stop however, and he will need to study hard over the break in hopes to do the bulk of work on his Thesis and prepare for his recital. Insert guilt-promoting reminder that Ben needs to do an update soon for all of his fans.


And me?
Well, you get to hear about most of my adventures as they come because I can't wait to post about them.
I turned 30, just in case you missed it. Since turning 30 I have been hit on and ID'd so I can happily move onto 31. My mom came to celebrate with me and while she was here I tagged along on a food shoot with Cristian Barnett. I have taken two french lessons to brush up for Paris in April which has been completely invigorating and other than that, I have just been watching and waiting for Spring to come and {the rest of my life to take shape}. I put squigglies around that because in truth, it is a completely loaded statement that I seem to let roll off the tongue like drool over Beatty's chocolate cake but in actuality, I obsess over daily...also much like the cake. Lots of "if's" right now. We have delicately placed our eggs in many baskets and are waiting not-so-patiently for one of them to hatch into opportunity. And while some may thrive on the anticipation it is difficult for a planner like myself to arrange schooling for Jakob and programs for Ella when I don't know what Country I will be in. It has also cast a shadow on life here in Cambridge, which I have been enjoying so thoroughly and I would like to think that once we have a plan, I will be able to more freely relish our time here and Ben will be able to concentrate more on his studies than looking for a job.

Yesterday was gorgeous! I really do love Cambridge. Every morning as I cycle to Jakob's school I keep thinking that I need to do a post about all the reasons why-from the thousands of cyclists heading off to school and work, the way that when it is sunny the whole city emerges and settles themselves on Parker's Piece, the way that just at the gate to Jakob's school, I can hear at least 4 different languages on any given morning and the way that Spring is blooming one day at a time and I wish I could bottle up the anticipation of seeing what each little bud produces....the list goes on.

Have a great weekend everyone.

From The Heart of Another

I can't remember why or how we came to know each other. It doesn't matter. We share a taste for Paris, Faith and Children's names. I have come to appreciate and love Sarah, her authentic heart and gentle spirit and know you will too. So today we are switching places.

****** 

From the outside, I look like I am living the dream...3 children, a warm home with a cozy bed, and a minivan. OK, so maybe we don't all dream of driving a minivan, but it does symbolize something beautiful: children. I am, indeed, living MY dream. However, there was a time when I did not even know if I would ever have one car seat in my car, much less three. You see, from the outside, one only sees what one thinks is the perfect life...but, inside, I am technically infertile. Inside, I harbor scars from the words of well meaning people who did not understand and whose words stung my already aching heart. I felt alone and forsaken by God. Unless you have walked in those shoes, it is hard to understand the heart of an infertile woman. While my home may now be filled with the pitter patter of three sets of little feet, my heart still hurts for those who are still waiting, hoping, and praying. Five years ago, there were three empty bedrooms in my house. The only sounds we heard in the middle of the night were the gentle purring of our two cats (who would grace us with their presence only in the wee hours of the morning by attacking our feet under the covers).  The silence was depressing. My womb...empty. There were desolate times while I waited. It was ironic that I was a Pediatric Nurse and loved children, yet I could not have any of my own. I felt it was a cruel joke and I often questioned God's will for me. I questioned whether my prayers really mattered. I questioned His love for me. I even questioned whether I was "good enough" to be bestowed such a gift.

Behold, children are a gift of the LORD; The fruit of the womb is a reward.

Psalm 127:3

If children were a gift and a reward, then where in the heck was my gift?!! Why would God not bless me? Why were unwed teenagers all over the world getting pregnant, some having abortions, yet God would not give us such a precious gift that WE would treasure? 

It was a dark time in my life. Most of my friends were working on baby number 2...and here I was just hoping for one. Just one, God!! Please!

There are so many myths about the infertile. I think I heard them all in those years we waited for a baby.

Myth #1: Just relax! 

Truth: Stress doesn't cause infertility...infertility causes stress. Most women are not stressed in the beginning. But, after a year to no avail, any person would start to feel stressed and depressed. We feel depressed because our bodies have failed us. We cry because something that is usually made out of love...well, eventually it becomes a chore. It's no longer Monday, Tuesday, or Wednesday, but cycle day 13, 14, 15, etc.

Myth #2: You should just adopt

Truth: Adoption is such a precious gift for all involved. I truly believe God has called us all believers to adopt...it's not just select people. But, it is also natural for a woman to deeply desire to carry a child in her womb...to look into eyes that resemble her own. We were created to carry children. No woman should ever be made feel bad because she desires a child that grows in her womb. The infertile do not judge the fertile for wanting the same. Our hearts are the same...some of us just have "messed up" parts.

Myth #3: Maybe God is trying to teach you something. (Please, I beg of you, NEVER say this to someone trying to conceive)

Truth: God adores you. He cherishes you. He can use anything for His glory, sure, but He does not like to see us suffer. You are His beloved. He desires only good for you! We can't always understand His timing.

I would cling to God's promise of goodness for my life. So many women in the Bible and God did not leave them barren: Sarah, Hannah, Rebekah, Elizabeth. Elizabeth became my dear friend from the Bible. His timing certainly caused Elizabeth heartache, but she still believed He would fulfill His promise. Had Elizabeth had her own way, there would be no John the Baptist. You see, God was not punishing Elizabeth. NO! GREAT WAS HER REWARD! He had a great treasure in store for her and he must of thought highly of her to make her John's mother! Isn't that such a beautiful thought? That perhaps our wait is because God has such a special child that needs to born at a certain time in this world because of the influence he/she will have on it. About a year and a half after giving birth to our first child, Ella (Ella-our shortened version of Elizabeth), I endured a miscarriage. Once again, I found myself questioning God's goodness for me. Why would a good God...a God who loves me...allow this to happen? My heart was crushed with grief. It's not like I could just easily conceive again. God had such a better plan than I ever had for myself. He was okay with being misunderstood because He knew that his plans were even bigger than I had for myself. You see, three months later, not only did he provide a child...He placed two perfect babies in my womb. To this day, I still feel so undeserving of so much goodness. And when I reflect on all the pain, it was indeed worth it. If you are waiting and wondering, do not believe the lie that God is withholding His blessings from you because of some wrongdoing. God has not forsaken you. You see, it's not about you. It's ALL about Him. If it was about us, no human would ever receive such a blessing. It's all about His kingdom. And God knows your pain. Look at how much Hannah poured out her heart. There is no denying she was in deep anguish. Yet, she still believed in His goodness. You don't have to hide your pain either.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."

Matthew 11:28-29

I think what I struggled with during those dark days was knowing that just because I asked and prayed did not mean God had to give it to me. I knew the reality was that God may or may not choose that for me. I also knew that I may never understand why...at least on this side of heaven. But I would pray for peace in the unknown...in realizing I had no idea where I was going and what God's purpose for me even was. That is all any of us really want...to not feel pain...to not suffer. The barren woman should always be handled with tenderness. Their hearts are fragile. Every pregnancy announcement, every baby shower, and every baby they see is a reminder that their womb is still empty. If you or someone you know is struggling with infertility, handle them with care. They are precious in God's sight. Remind them of God's insanely deep love for all those who were barren in the Bible. Remind them that it isn't because they don't have enough faith...if anything, God is showing the world how great their faith is indeed. God uses barren women in great ways...what a treasure they must be to Him!

Photo courtesy of Lisa Russo Photography

About Sarah I am a child of God living in fallen skin. I am a mother, sister, wife, and daughter. I like to overuse ellipses and write run on sentences. I am not a writer, but I write. You can find my daily musings at To Him Belong. You can also join me on my new venture, a daily devotional entitled Seven Days of Grace. It's a devotional for imperfect people...people who are fell of sin...but desperately want to find grace and love in our Savior. It is a place for doubters, atheists, agnostics, and those that have believed in Jesus their entire lives. It is a place where are all welcome. I'm a southern gal...and we are known for our hospitality. So come on over y'all.

Absence.

I have been absent. In body and mind.

While a kaleidoscope of thoughts have been weighing on my heart and mind I can't share them in this space...yet. There are things to be said, there are truths to share, there are causes to defend but for now, just let me be.

Spring is starting to bloom here in Cambridge. The trees are blossoming and the daffodils made their long awaited appearance this week. After a winter laying dormant, life.

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you.

“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

(Matthew 6:25-34 ESV)