10 Years Since a Special Little Boy was Born

10 years ago today, Jakob Oliver Mastin came into the world after a 30+ hour battle. One that eventually came down to a c-section as he just wasn't coming out any other way. He seemed so perfect, and we'd never even heard of SMA! We both still have so many memories of those early days in the hospital and at home with the little guy.

His first sink bath

10.

Years.

It honestly doesn't even seem real sometimes. All the struggles and all the challenges through his 363 days of life...sometimes memories are a blur, sometimes crystalline in their focus.

10 years later, we still miss Ollie, but we have his brother and sister running around like crazy people to keep us busy and moving forward. Penny and Isaak know his story, and every once in awhile, they'll ask questions or make a comment about him that makes us pause and get a little teardrop rolling down our cheeks.

Last year, we were emotionally and mentally exhausted and weren't quite up to the Walk-and-Roll. This year, we've decided to go for a massive, if unlikely goal: $10,000 for Ollie's Team!

Can we do it? We hope so. If 500 people donate $20 - boom, goal met! If you feel like you can pass this little article around, please do. We'd love to be able to make a big symbolic gesture for little guys 10th year. There are still a lot of SMA kids out there that need our support and our help. If you can actually come walk, that would be extra cool, but just being there in thought means a lot.

Major progress with drug trials such as Spinraza are providing new hope for SMA patients and their caregivers - but there is a long way to go and those treatments are expensive.

If you feel led to donate:

Ollies's Team Page for the September 29, 2018 Walk-and-Roll can be found here:

http://events.curesma.org/site/TR/Walk-n-Roll/General/143950548?pg=team&fr_id=3255&team_id=6893

More information on SMA Awareness Month Here:

http://www.curesma.org/sma-awareness-month.html

Thank you all for the love and support over the years. Between Oliver and the rough entry of Penelope and Isaak into the world, we never would have made it without our friends and family around the world.

Thanks for sharing our journey.

Neil, Bekka, Penny and Isaak

2016 Carolina's Walk-n-Roll is Here

Sometimes, in the speed at which we live our lives, we forget to put information out there. This is one of those times.

Next Saturday, September 24, at 1:00PM is the 4th annual Carolina's Walk-n-Roll in support of Cure SMA. The Mastin family has been an active participant in planning, organizing, and fundraising for this event since it's inception. It will take place at Anderson Point Park near Knightdale.

So far, the campaign is a little over halfway towards its fundraising goal of $15,000. Let's see if Ollie's Team can help close that gap!

Thank you to friends, family and strangers that have supported us and the fight against this crippling disease for the last 9 years. More has been accomplished in the last decade of research than the previous 50 years combined. Several promising treatments are in trial as I type this. Treatments that could help slow or, in some cases, partially reverse SMA damage.

SMA has been described as "ALS in babies" and while the disease mechanism is different, the results are the same and just as terrible.

You can help out by donating to Ollie's team or by joining the team and creating your own team to further recruit. We can always use more walkers to fill the event out, but your donations are what helps drive the further development of a cure and support for SMA kids, adults and their families.

Donate to or Join Ollie's Team

Visit the event web site

Thank You so much for your love and support!

Another Birthday Reflection - 8 Years On

The old blog has gotten a bit dusty over the last few years. Life tends to catch up with you, and when you are chasing twins around, time seems to slip from your grasp with terrifying ease.

Looking back over the last couple of years, posts are mostly centered around Oliver's birthday or the SMA walk. We are OK with that. In many ways, it means that our lives are "normal". The 2 and 1/2 years of insanity that encompassed Ollie's birth in August 2008 through Spring 2011 when Isaak was free of all IV and G-tubes was quite enough for one family.

August is always a bittersweet month. We celebrate Ollie's life yet also must mourn his passing. In some ways it is so appropriate that August is SMA Awareness Month, but it doesn't make it easier.

This August is even more bittersweet than usual. As many know, Bekka lost her father in May. He had battled lupus for 20 years and cancer for the last year. His birthday is August 29.

If there was a way to just skip August, I think some years we would choose to do just that. Since we can't, we will give Ollie's little sister and little brother extra squeezes and we will remember a little guy that brought joy, laughter, tears and reflection to many lives.

Happy Birthday Jakob Oliver Mastin. It would have been great to know the 8 year old you.

We Celebrated Each Month's Birthday
Click here for just a few of cutest pictures I could find of Ollie's time with us.

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

Holiday Grief Bomb

There is a concept called a “grief bomb”. It’s a sudden explosion of emotion and memory related to a loss and is usually triggered by a small reminder. It could be a scent, the mention of a name, a piece of paper - or maybe a stocking for a little boy that only saw one Christmas.

We are traveling to Oklahoma for Christmas this year, but because we have two energetic 4 year-olds, we decided to go ahead and put up a tree and decorate the house a little. While I was at work, the kids were helping Bekka hang stockings. Being a smart and curious little girl, Penny noticed there was an extra in the box.

“Whose stocking is this, Mom?”

Bekka told her it was her brother Ollie’s stocking.

Penny asked, “Where is Ollie?”

“In Heaven" , Bekka replied.

Penny thought a moment and said, “I wish Ollie could come here.”

So do we little one, so do we.

This of course, set off a round of tears for Bekka and then another round for both of us when she told me the story in the evening. The kids know about Ollie – his pictures are everywhere, but at their young age they don’t completely understand yet.

The holiday season is fun and frenetic now with two little ones to bring boundless excitement and love to the occasion.  Kids make Christmas so special.

But the holidays are hard, too. They are harder than Ollie’s birthday. They are harder than the anniversary of his death. In the back of our minds this time of year, there is always a little sadness, a little melancholy. During the rest of the year, we think about and miss the little guy, but when Christmas rolls around, and that extra stocking is in the box, all of the “what-might-have-beens” in the world come rushing in.

The only solution we have found is to cry a little (or a lot), think about the good times we had that special Christmas, and then hug the sweet little munchkins that are his brother and sister as hard as we can. The challenges of the last few years have been many, and I have no doubt they will continue, but the rewards have been great. We are watching two beautiful children grow, we have many caring and wonderful friends and we are blessed with such a strong family.

This Christmas, let us remember those we lost in past years, but most importantly, let’s hug those we have with us today - and tell them how much we love them.

Click on the photo for memories from winter 2008

2nd Annual Carolinas Chapter Cure SMA Walk-n-Roll

Good Morning!

It's hard to believe it's been a year since our very successful first event. The SMA community in the Carolinas really appreciates all of the support that was shown and we are pushing forward to make this event bigger each year.

Like last year, the event will be held at Anderson Point Park in Raleigh.

Unlike last year, it's a little earlier in the fall and also being held in the afternoon in the hopes we will not have a freakishly cold morning (sub freezing!). 

Bekka has now set up our team for the event. 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. It's too late for Ollie, but so many still need help.

The walk is scheduled for October 11, 2014 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 hope to see you there.

6 Years Since a Little Wonder was Born

Not much to say, really. Ollie would have been six today.

We still miss him, and we always will. Each year get's a little "easier", but that's all very relative. I will be forever thankful for the capacity of the mind to highlight the best memories of our time with Ollie and keep the worst buried a little deeper. Today is one of those days that the two fight it out, but that's OK. Life is made up of good and bad moments. That balance is what makes us human and helps us understand and empathize with others. Ollie taught us a lot of lessons like that.

We are thankful for his crazy little brother and sister that keep us so occupied and focused on the future. It will never stop the "what might have been's", but those two give us a whole different set of possibilities.

Love ya little guy!

Happy 4th Birthday to our Favorite Set of Twins

It's hard to believe, but yep, it's been 4 years since we ended an unbelievably stressful period of hospital stays for Bekka only to begin an even more unbelievably stressful chapter of hospital stays and surgeries for two tiny kiddos. Thanks to incredibly talented doctors and nurses, they both made it home.

When I say tiny, I mean tiny. 1lb 7oz for Penelope and 1lb 11oz for Isaak (or 650g and 780g for our hospital and foreign friends ;) That's what being born at 25 weeks and 3 days gets you. If you want to relive that, just follow this link: A one line blog post! and then click on newer below each post.

When Penny came home (nearly a month before due date), she only weighed a little over 5 lbs and when Isaak came home a month later (just after his due date), he weighed just over 6 lbs. Now they are both around 75th percentile. Amazing.

Thanks for all the support, love, wishes and prayers over the years. The kids are ecstatic as Grandma and Grandpa are here visiting from Oklahoma and Nana and Pawpaw will here this weekend. I predict a lot of spoilage.

I won't be so dramatic as to post "birthday" pictures today, but enjoy a couple from shortly after they came home (when they would have been full term):

And a goofy picture from this morning when Grandma gave them Doughnuts for breakfast (What else are Grandma's for? Amirite?)

 And a couple of silly pictures:

Walkin' and Rollin'

In his short life, Ollie never had a chance to walk, but he definitely loved to roll.

To honor the memory of Ollie and all of the other SMA kids lost to this terrible disease and to promote research and build support for those families and children still battling the disease, the Families of SMA Carolinas Chapter will be holding it's first ever Walk and Roll event.

We've received so much love and support over the years from friends, families and strangers worldwide but we would like to ask for just a bit more. Please consider a small donation to support our fund raising efforts or even start your own team!

Click here to go to Ollie's Team page.

Thanks.

Neil, Rebekka, Penelope and Isaak

Additional details on the event can be found here:
http://www.fsma.org/Fundraising/EventsCalendar/index.cfm?id=8080&eventRedirect=1&type=1154

Happy Birthday Little Man

36 hours to be born.

363 days to live an all too short life.

1 Beautiful Little Boy.

We love you.

We miss you.

We will never forget you.

Jakob Oliver Mastin.

Ollie.

Our Son.

Penny and Isaak at Play

It's been a while since there was an update on the munchkins. Chalk that up to being insanely, crazily busy at all times.

ALL. Times.

For now, let it suffice to say that Penny and Isaak are doing great, running us ragged, running their preschool teachers ragged, and being 100% 2 years old. I hope to have more pics and highlights up in the not too distant future (hopefully not 6 months or more!).

Ollie's Park

This post won't be long, but I thought I'd take a moment to highlight something that means a lot to us. My parents live in, and my Dad is the Operations Manager of, a community called Powder Horn Mountain outside of Deep Gap, NC. It's in a beautiful spot in the northern mountains. During the many (but at the same time, far too few) days of Ollie's Tale and the early, terrifying, days of the twins, many of the members of this community were incredibly supportive with time, effort, money and love. They supported us and even more so they provided love and care for my parents (and still do).

Not long after Oliver passed away, it was decided to name the playground at Powder Horn in his memory. This was an incredibly touching gesture and means more than Bekka or I can clearly communicate. To know that the little guy will be remembered and that many children over many years will get to play in a way that Ollie never could, warms our hearts. Two of those children are, of course, our own.

Penny and Isaak at Ollie's Park

The playground is currently in the process of being upgraded thanks to donations of equipment and supplies from my parents and Bekka's parents (check out the very, very orange crawl tube!) and a major donation from the Powder Horn POA. Just as import was the contribution of time by local volunteers and the efforts of the maintenance staff to do the work. This little park is looking spiffier than ever.

Last weekend Penny and Isaak christened the park with a play date, just before we hit the road to come home. As you will see in the photos and the video (especially the video), they had a blast.

Thank you everyone.