Toby's bedroom makeover!

Moebius Syndrome Awareness Day

We all desire to know the future, to see clearly the road ahead.  But if we did, there may be things that scare us, because we are not able to see the preparation we will have, or the strength that emerges.  Often such things turn out to be some of the most incredible blessings in life.

Nine years ago, with a diagnosis of Moebius Syndrome, our baby girl faced an uncertain future.  Would she walk or talk?  Would she eat and drink?  Questions she has answered without doubt! 

We aren't able to answer the question of how Emma Hope, or anyone else, developed Moebius Syndrome.  The quest for an answer can be a blinding distraction to the journey we find ourselves on, because answers are unlikely, this side of Heaven!

What may seem like devastating news can actually reveal purpose, strength and character, in light of God's promise to bring good out of all things for those who love him.  This is the perspective we choose to have as we navigate life.

Every day, when I pause to think about the impact Emma Hope has had on my life, and so many people around her, I am in awe.  Courageously facing her fears and refusing to be angry or sad about thing, and people, she cannot change.  Her faith and trust in God, that He has a plan for her life, and will be her strength and shield all her days, is inspiring. 

So, today, we work to increase understanding and awareness of Moebius Syndrome.  We want people to be aware of the tendency to pre-judge those who look different, or are unable to express themselves in the same way.  Look at the heart, see the smile that shines out!!

Happy New Year!

I was both shocked and surprised to discover that someone other than my mum and grandmother have been following this blog!  (Hi Sandy!)  How exciting to find out that Emma's story is enjoyed by people, and hopefully my writing can do justice to the everyday triumphs of her quiet faith and strength.

I feel somewhat guilty that I've been neglecting posting lots of things (in favor of the wider reaching Facebook), which maybe you would have enjoyed.  Also due,in part, to the glare Scott gives me when my face is glued to the little screen, and not engaging with the family I write about!  It's tough to find the balance of being present, but also wanting our lives to be poured out in hope and encouragement for others.

I will resolve to do better this new year!

If you are following this blog, and have never made contact, I'd love to get a comment from you, and maybe any feedback on how the Story of Hope might have impacted your life.  I love to share such feedback with Emma, so she is not oblivious to her impact on the world.

I also want to take this opportunity to encourage you to stand with Emma and our family on Monday, January 24th for Moebius Syndrome Awareness Day.  Wear purple, tell people why!

We are continuing the drive to raise awareness of this syndrome, not only for social and societal understanding, but also to inform the medical community, so family doctors, pediatricians, midwives and even NICU nurses, can recognize the syndrome and help babies thrive.

I'm excited that this year Emma will wear a recognizable smile on the day that means so much to her.  Her school principal told her teacher that the whole school will be encouraged to wear purple and she was AMAZED!  This is how we change the world!

Scarlet, my darling

This was our Sunday evening...

Following a week long cough, Emma developed a rash on her cheeks Saturday morning, which quickly spread to the rest of her body.  We didn't hesitate to take her to urgent care (a walk-in doctors office that is open 7 days until late and has a lab and x-ray on site!) where they diagnosed Strep Throat with Scarlettina - Scarlet Fever.

We picked up the antibiotics, and drove home in the building snow. 

On Sunday, Em and Scott stayed home from church but the rash seemed to be only getting worse.  I called the care place and asked them if it was normal to itch and get worse.  They prescribed a steroid which quickly worked.

Still, it all takes a toll on a little girl and Emma wanted to just cuddle with mommy!

I kept her off school on Monday to give more time for the rash to heal.  She had plenty of energy and enjoyed missing gym class and watching TV all day!  Just as well since I was working from home!

Back to school tomorrow.

If you are tired from carrying heavy burdens, come to me and I will give you rest. Take the yoke I give you. Put it on your shoulders and learn from me. I am gentle and humble, and you will find rest. This yoke is easy to bear, and this burden is light.
Matthew 11:28-30

I've heard it and read it many times. Today it came with the goal to "spend more time in rest than worry and fear." And then our pastor moved on to the next point.

But not me - I was stuck. He was correct, I have been conditioned to try to fix everything, to Google the answers and do everything until it's better.

I don't think you need to have a child with "a diagnosis" to recognize the "heavy burdens" I'm dragging around as a mom. Trying to control the variables, influence the world and even feeling the pressure to HEAL my child!

No amount of care prevented Emma getting scarlet fever, and while not the worst diagnosis she's ever received, seeing her sweet face covered with angry red marks and welts has broken my heart. Not preventing, and not being able to take it away has hit me hard, harder than many previous things.
So the invitation to lay down the burden at the feet of One who CAN heal, protect and restore. Not just Emma, but me. And you.

When the service was opened I went straight to the altar, to kneel and lay down the burden I've been carrying all this time, without realizing how much it has been weighing on my heart. Apparently burdens come out of our eyes in salty droplets, and they flow quickly.

I can't promise I won't forget that it's not my burden to carry again - even tomorrow! But my prayer is that the Holy Spirit will quicken my heart when I reach for the control that is merely a chain of performance that looks like power, and I will drop it like a hot potato.

Christmas

After church on Christmas Eve (above) the kids got new Christmas PJs (below)!

In the morning they got their "stockings" and brought them in to our room to open, before church.

A giant root-beer float (like an ice-cream soda!)

Boxing Day Brunch

This year I think we started a new tradition - Boxing Day brunch!  We had our good friends over at 9am (because the kids get up that early anyway), made breakfast and hung out until evening!!  Good times and a great way to chill after all the crazy!

And I ate this - bacon, ice-cream and a waffle!!  It was great!

Really, Really Good News

This past Sunday was the church's family Christmas show "The Really, Really Good News".  Emma was an angel and Toby was a shepherd (he was happy to not be an animal this year!)

Winter is here

The weather has been a tad cold of late - winter is here!  It looked pretty, even if it felt terrible.

This was from last week, but yesterday was 18f  in the morning!

Holiday Tea

It was Emma's school show last week.  She looked beautiful and gave it her all in the performance!

Em and her BFF Margot!

Fur Baby

The puppy that thinks he's a baby!

Puppy Love

Following a childhood dream of having a [small] dog, we adopted Duncan.  It was not a spur of the moment decision - it's been a "want to" for a long time, but there were many considerations:

- Expense (food, vet bills, etc)

- Hygiene (house training, poop scooping)

- Smell (in the house)

- Care (home alone, vacations)

- Behavior

We went back and forth on it for over a year, but since everyone seemed to want to do it, it was on the horizon!

It certainly seems like Duncan was a great choice for us!  In just the time we've had him most of my concerns have been waylaid, or seem insignificant to the joy and companionship he has brought.  He likes nothing more than to snuggle, or lay with us anytime we are stationary.  He never barks when in the house (unless the door is open and he sees a dog walk past!) and when visitors come, he runs over and flops on to the floor for them to rub his belly! 

The kids are having fun teaching him to play fetch too.

Most importantly, he is showing the kids the need to be considerate and responsible.  we are encouraging them to share in his care, but also, that having a birth defect like a crooked paw, does not diminish your value to others.  We know Emma identifies with this and we are happy to show the kids, in a practical way, that love does not focus on flaws or challenges.

Scott and I are enjoying our little buddy and love seeing how he interacts with us after the kids go to bed! 

He loves to lay like this, and will even stay there after I get up!

 We assume it's because he's so comfortable in our home!

Duncan, aka Dunkin Donuts

With thanks

We had 16 for dinner, so we set up the 10' table in the living room!

Em loves holding Addison!

Toby loved the football field Scott made him!

The Morton kids!

The next generation!!