July

It just hit me what a busy month we have had!  It started in Virginia, with a wedding and meeting distant relatives for the first time.  Then we had two big barbecues at the house, on the new patio.  We had the brick work pointed on the house, and then Scott fractured a vertebrae in his back!  We headed to Florida for 5 days, and were swept up in the love and acceptance of the Moebius community before heading back home and wrapping the month with the Swim Team banquet last night!

The kids swam in 4 swim meets, had a great time and Emma also won the Coaches Award for her age bracket, for showing perseverance, good attitude, helpfulness and flexibility.

August appears as though it will be a quiet month, while Scott heals and we get some rest before the new school year is upon us. 

Time is moving so fast and it's bittersweet to see the kids growing up and having so many wonderful experiences.  Each step a step away from our tight family bond. 

But that's the greatest challenge of parenting, recognizing that these little humans don't belong to us, and are merely entrusted to our care for a short (but crucial) period of time.  What the future holds is not our to know, but we pray, trust, and hope that they have what they need to succeed in the plans God has for them!

Moebius Syndrome Foundation Conference 2018

Despite Scott fracturing his vertebrae last Sunday, we still made it to St. Petersburg Florida for the bi-annual Moebius conference!

Excited for the flight!

The Vinoy is a 90 year old hotel and it was fantastic!  Beautiful, and the room was huge with comfy beds.

The view from our room

The marina across the street

 The pool

Dinner the first night!

Before the conference started we visited the Clearwater Marine Aquarium, the home of Winter, from A Dolphins Tale. 

Winter's tale fell off when she was a baby and had been caught in a crab trap.  Emma loves the movie, so it was a cool trip.

Touching baby Rays!

We stopped at Clearwater beach for lunch and a quick dip in the Gulf!

Time for the conference!

We all met Jono Lancaster, a motivational speaker with Treacher Collins syndrome.  Jono is from Leeds in the UK and was the keynote speaker at the conference.  He also became a friend of our family!!

When we could get Scott to rest, he did!

Toby was 4 at the last conference, so this was important for him.  He attended a few sessions, including a sibling group lead by some therapists.

We met lots of kids, many who knew Emma from their moms showing her picture on Facebook!

Jono gave a great opening speech, really impacted us.

Then the kids could play!

These two got along so great all week, and helped me whenever I asked.  We are so proud.

Toby enjoyed the free continental breakfasts, eating more croissants than I could count!!  We really gave them a break on the calorie watch this trip!

These teens have a strong friendship and I hope one day, Emma can find similar friends who know what she deals with!

 The group picture of kids!

Then Emma held Leland, the newest member of the family, only 5 weeks old, with Moebius Syndrome.

The pool DJ had a hula hoop contest!

Emma performed at the talent showin front of around 300 people!!

Last breakfast!

This picture is from Friday evening, when some of the moms from the Facebook group all went out for a drink.   I wasn't anticipating the conference having a big impact on me, but it did and I made so many new friends.  Many knew me and Emma from Facebook and we had a lot of positive comments about inspiring people.

Truth is, many of these women have children with severe medical issues, and they are warriors!  They show grace and love under pressure I couldn't stand, and for those with little kids, they now have a sisterhood!!