3rd Annual Carolinas Chapter Cure SMA Walk-n-Roll

It's just a smidge more than a week from the 3rd(!) Annual Carolinas Chapter Cure SMA Walk-n-Roll. Like in previous years, the event will be held at Anderson Point Park in Raleigh.  The walk is again being held in the afternoon in hopes that more folks will be able to participate. (And, fingers crossed, avoid the freaky cold weather we had at the first event!)

Our team, Ollie's Team, for the event has been set up. If you have the time to come and walk or can donate to the cause, many children and adults with SMA as well as their parents and caregivers would be most appreciative. While it is too late for Ollie, there have been major advancements in SMA research over the last year.

The walk is scheduled for Saturday, October 10, 2015 from 1:00-3:30 at Anderson Point Park in Raleigh.

You can visit Ollie's Team Page to join or donate or you can create your own team if you like. General information on the walk can be found at the event's main page. 

We'd love to see many of you there. Whether you can make it or not, Neil and I would like you to consider making a small donation - just $7 - in memory of our sweet baby boy who would be 7 years old now. Maybe you could even find 7 friends that would also make a $7 donation to the cause. Share the link for Ollie's Team Page or for this post on social media, via email or go "old-school" and call. Every little bit helps!

Bittersweet Milestones

Today is the 6th anniversary of Oliver’s death.

He would have turned 7 on Wednesday and should be starting 2nd grade right now. This also happens to be the first full week of kindergarten for his brother and sister. The progress Penelope and Isaak have made since their far too early birth still amazes us almost daily. We’ve taken great heart in each milestone they have reached: crawling, walking, talking, running, preschool and now, kindergarten.

However…

This anniversary seems to be more difficult for us than any since the first.  Penny and Isaak just made a big jump into the real world and achieved another milestone that Ollie never can.

That’s hard.

Day to day, we don’t (can't) focus on it much as we stay so busy with Penny and Isaak, and they deserve our full attention...but it’s never far from the back of our minds. We try so hard to celebrate their lives and their milestones while also quietly grieving the loss of a little boy and his future that will never be.

The twins understand the basic concept of having had a brother, but they can’t quite wrap their heads around the fact that he will always be a baby. A few months ago, Penny asked “Mommy - Is Ollie real?”

What do you say to that?

To Penny and Isaak, he is a name and a bunch of pictures. Both kids know that it makes people cry sometimes to talk about him but aren't sure what it all really means.

Life is a journey and ours has had its challenges…maybe more than our fair share if I’m honest. We've been blessed to share the journey with wonderful friends and wonderful family members. We have met great new people and build closer bonds with many we already knew, but given a chance, we’d trade that and take a healthy, SMA-free Ollie back in a heartbeat.

Our long, strange, trip will continue with two smiling kids by our side and flashes of butterflies and dragonflies in unexpected places to remind us of a little boy with big blue eyes and a mischievous grin that left a great big hole in our heart.

We miss you Jakob Oliver Mastin.

August 5, 2008 – August 3, 2009