Behind the Seams of a Work of Heart

This post is probably the first post where we are actually taking you behind some scenes like the title of the blog implies. It is hard to know where to begin when the post subject dates back 15 years. It all began at the beginning of B4SMA, in fact, some of it may have come before the official start. Gma Jlo saved "scraps" of fabric used in making blankets that were quilted. At the time, we weren't sure what the purpose of saving each piece would turn out to be, but none the less, the ritual continued up until the end of 2018. Each and every blanket made with flannel, by volunteers Gma Jlo, UNI B, DynamiTe, and Gram Losstitch, is represented as they saved their scraps also. For the better part of the last 15 years, those scraps have simply piled up at Gma Jlo's house waiting to find their purpose. 

At the beginning of 2019, Gma Jlo got tired of having all these pieces, some little and some bigger, just sitting in her closet. Whether or not she will ever admit this, she is kind of a genius. She decided to take all of the scraps of flannel and turn them into a memory quilt, of sorts, for us. Each and every piece has a memory and a child (teenager, young adult) attached to it. From a blanket made back in 2006 featuring zoo animals to one made with flowers on it last month; each flannel blanket is represented equally. It will take us weeks, if not months, to look at and discover each and every strip incorporated in this stunning work of art...work of "heart". The quilt will be a treasured memento for the rest of our lives. Thank you, Gma Jlo, for having the forethought and, yes, genius idea of saving little scraps of fabric so that someday, today and any day in the future, we can fondly look back and play "I Spy"/"Eye Spy" with each piece of material used to create this masterpiece. 

Here, in all its glory, is the quilt featuring the flannel used in blankets in the 15 years of B4SMA flannel blanket making history.

The Flannel Work of Heart
(with the back of the quilt visible in the upper right corner)

The Work of Heart

Smile 4 Me Saturday - Applause

 This is Stella. She received a blanket from B4SMA in May 2019 that was made by one of our long-time volunteers, Ms. Merrymaking (nickname for B4SMA and privacy). Ms. Merrymaking had Polio as a child and now lives with the effects of Post Polio, making each blanket she creates a true labor of love. Now back to Stella ...

When Stella's mom sent the photos of Stella with her blanket she included an extra special gift. We love all of the photos we receive (since that is all we ask for as "payment" when we send a blanket) of the kiddos snuggled up and feeling the blanket hugs. It is rare that we receive anything else so this brightened our day significantly. We hope that it brings a smile to your face too!

Click on the triangle below to Play the Video 

Blanket Fort Friday {BFF}: Heaven Sent

This is Jack. I believe that God brought his family into me for a reason, although I didn't know why at the time. Jack was diagnosed with SMA and I e-mailed Kathy about sending Jack a blanket from B4SMA. Kathy said they would love one. So we sent out a blanket that weekend. I still remember receiving the e-mail with Jack's pictures, he was one of the most adorable and expressive babies I had ever seen! On my birthday, January 8th, Kathy e-mailed me asking if I could have anything for my birthday what would I want. I honestly didn't know what to say! So I said the first thing I thought of "a shopping spree at JoAnn Fabrics". Kathy said since she couldn't take me shopping, how about she send me some fabric. I, of course, said yes! I didn't hear from Kathy for a few weeks and then suddenly we received 5 MADE blankets with stuffed animals 3 days from her! We were in awe. Honestly, we didn't know what to say. I talked to Kathy every so often. We have received a total of 8 blankets from Kathy over the years in memory of sweet baby Jack. There are dozens of SMA families who quietly support B4SMA in memory of their babies and children by donating blankets and stuffed toys.

Most of them are not involved in the SMA Community and prefer to be anonymous. This post i1a thank you to each and every one of them. Your angels will never be forgotten in spite of their all to brief time on Earth. To borrow a quote from another SMA quilt organization (more on this in a future BFF post), COLE's Quilts, “It’s not how deep the sea. It’s not how wide the sky. It’s how sweet the time, From hello to goodbye.”. Thank you, Jack and all the other SMA Angels, for guiding
your families to choose B4SMA as their way of keeping your memory alive. And even as the day of B4SMA no longer being needed approaches your memories will like to in the hearts and minds of the individuals who received a blanket in your memory and everyone they know. The chain of blanket hug love will never be broken.

Jack with his B4SMA blanket

Blanket Fort Friday {BFF}: First Blanket

Do you ever have one of the days where you want to build a blanket fort, hide out from the world and remember only the good times? We do and decided to make a digital version. This is Blanket Fort Friday {BFF}, which is our version of Throwback Thursday or Flashback Friday or whatever you want to call a look back. We won\t be doing this every Friday but thought that it would be fun to give you a glimpse back at B4SMA's history. Enjoy!

B4SMA - Blankets for Spinal Muscular Atrophy kids (B4SMA) started in 2004, officially, but our quilt giving started before that. The first recipient of a quilt, prior to the inception of B4SMA, was Casey O. I can't remember his exact age but it was somewhere around the age of 4 years. This picture is not from the exact age he received it but still super cute. He's now 22 years old and so grown up. Casey is one of many warriors that we are privileged to have sent a blanket too through the support and generosity of volunteers. 

Casey with his B4SMA "Stack and Whack" quilt blanket 

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B4SMA's 15th Anniversary

Fifteen (15) years of B4SMA - Blankets for Spinal Muscular Atrophy kids. 15 years of blanket hugs. More than 2000 blankets sent. Countless yards of fabric, hundreds of thousands of spools of thread, hundreds of skeins of yarn, thousands of stuffed animals and little toys, hundreds of thousands of knots tied in fleece blankets, hours that add up to months that add up to years behind a sewing machine, still more hours of hand stitching loving stitched into every blanket ever sent attaching a B4SMA label and innumerable volunteer hours

poured out of the fingers of individuals from around the world. We would be nothing without our volunteers and they deserve all the credit for us reaching this milestone.15 years have come and gone and we're still here. We have so many people and groups who have volunteered over the years that it would be impossible to thank them all but a huge thank you nonetheless if you have ever supported B4SMA in any way shape or form. We have to, however, take a few lines to thank four of primary volunteers* for they are the behind the scenes, the backbone of everything that B4SMA. Gma Jlo, Aunt Jo'Quami, UNI B, DynamiTe, Poik Puller, BetsOn Point and our permanent guardian angel, Gram Losstitch (for their safety we're using invented nicknames). One day, someday, in the not too distant future, we will have fulfilled our mission of giving until a cure is found and we are no longer needed. Until then we will keep the warm fuzzies and signature blanket hugs coming.

*Volunteer profiles to come in the future. For now, know that all of the volunteers are family members of the vice president and president and dedicated to the kids of B4SMA more than anything else. 

 and 

I Spy: Behind the Seams of the Eye Spy Blanket

Last Eye Spy Blanket Made

Back in March 2004 (no, I can't believe it has been 15 years either). B4SMA was never supposed to be a blanket organization. Initially, we had planned to join forces with another family to provide larger, more comprehensive care packages to families diagnosed with SMA. After making more than 20 blankets Gma Jlo* were more than ready to begin making with this larger organization. Unfortunately, in the long run, or perhaps it was fortunate, that collaboration fell through. The only problem was is that we had 20 blankets and nowhere to send them. B4SMA, like all the best ideas, was born at 2am by a sewing light, Brenda's** brain, and a post-it note.

One of the very first blankets was a fabric panel called eye spy or, like the popular kids game, I-Spy. It quickly became one of our favorites, as it provided, not only a blanket but also a game. Over the years that eye spy panel has made its appearance several times. No two are alike and it is still a favorite15 years later, the eye spy panel has made it's very last home this past month.

Connor R with the First Eye Spy Blanket

Axel D with the Last Eye Spy Blanket

*Volunteer profiles to come in the future. For now, know that Gma Jlo is 1) our first and most active volunteer and 2) in no way like the notable Jennifer Lopez - our Jlo is about it billion times more generous and her sewing skills are impossibly more beautiful.

**Vice President, co-founder, all around the heart and soul of B4SMA going for the past fifteen years.

Help me Find it

Over the past month, I have been seriously inspired by the Sidewalk Prophets' "Live Like That" CD. Every time we drive to the hospital, be it for routine appointments, meetings, or semi emergent problems, we blast "Live Like That" for the entire 45 minute trip. Now, I am the first to admit that I tend to shy away from overtly Christian music for the B4SMA Productions awareness videos due to the fact I want to ensure that everyone feels welcome and supported by B4SMA. That being said, I love listening to Christian music in my personal life and "accidentally" stumbled across "Live Like That" earlier this year. From the first time I listened to it, I felt truly compelled to create SMA Awareness videos centered around three of the songs from the "Live Like That" CD.
In case you are unaware of SMA, here is a bit of information you might find useful:

Quick Facts About Spinal Muscular Atrophy (SMA): 

• SMA is the #1 genetic killer of children under the age of 2. 

• SMA children with the most severe form often face quickly  increasing muscle weakness, leading to paralysis and death. 

• One of every 6,000 children born are affected by SMA. 

• One out of 40 people, most unknowingly, carry this deadly gene. 

• SMA does not discriminate. 

• There is NO CURE, however, with funding for research, SMA is the most likely genetic disease to be cured in the next 2-4 years.  A cure might not restore lost functions, but will stop further regression. 

While August is recognized as SMA Awareness Month, for families who have had their lives irrevocably altered by the diagnosis, every month is SMA Awareness Month. Educate yourself and others about this disease and help us find a cure.

Every year, I do my best to educate my friends and family about SMA and the challenges facing those living with it, as well as those who have lost their battle. I also aim to give you facts and stats in regards to SMA. I will be doing all of that again this year but with a twist... I am not the only face of SMA. I am just one of thousands. This year I hoped to not only educate but to introduce others who have been impacted by SMA, as well as organizations that improve the lives of individuals. My original goal did not involve God or Christianity but I think He led me to different plans. I would like to encourage everyone to watch all of the videos to the right and below and learn more about SMA and Help Us Find a Cure.

Save My Life SMA Awareness video

This is Not Goodbye SMA Awareness video