ELLAwareness &  Mama Bracelets  welcomes you!  The ELLAwareness For SMA Video Click here for our SMA Facts Page

I normally don't post these thoughts for a variety of reasons, yet this one I felt compelled to do so...don't ask me why. A deep pit in my stomach made itself known to me this morning as I was with Ella.  I had taken her to Aqua Therapy then to see my Dad in his nursing home.  Since I was driving my car I didn't have her power wheelchair and I forgot to bring her manual chair.  That was fine...I didn't mind carrying her. As we waited for the elevator after our visit with my Dad I was able to take a good long look at Ella.  I don't think she knew I was watching her so intently, or maybe she did and didn't mind, but she never once looked at me for a full minute.  She kept her gaze on the closed doors of the elevator waiting patiently for its arrival. My eyes sank deep into her face, watching as she silently allowed me to.  I noticed something I hadn't really taken notice of in a long time, probably since the months leading up to her diagnosis ...

Today I finished three new Mama Bracelets necklace designs and they are now available for personalization and purchase at www.mamabracelets.com (under " Hand-Stamped Jewelry "). Here's a sneak peak... Four-Sided Swivel Pendant Necklace Artisan Disc Necklace "LOVE" Necklace

The Home with a Heart   I spent 8+ years with an amazing group of people working with children, ages 5-12. It's where I found out that I wanted to spend my life working with children.  It's where I found lifelong friends.  It's Hephzibah Children's Association   The Home with a Heart Hephzibah is a residence and foster home, coupled with an incredible daycare program. I was part of the daycare program.  I started out as a staff member, became a supervisor, and eventually was a coordinator for a short time.  I worked with hundreds of kids and scores of staff members. I visited them this summer while they were at their summer program location...a nine-week stint that occurs every summer; housing hundreds of children from Oak Park in one location--Monday through Friday from 7:00 am - 6:00pm.  A program that is run so well it has gained notoriety and respect in the community.   I was once part of that program.  It felt w...

Mama Bracelets is now open for business! Our website is open and ready for your orders! Also, we will be adding three new items to our inventory...details soon!! Our current inventory includes the following items:   Please visit us at: www.mamabracelets.com

I feel like I've lost my identity.  I've lost the real "me". Since Ella was diagnosed (almost a year ago), it seems that I have become someone other than Lindsay.  I have become simply "a mother of a child with SMA." It's hard to compete with that.  After all, being a mother of a child with SMA takes up a lot of time, energy, and strength.  And with all of that, I feel like I've lost myself.  I've forgotten who I am as a person.  Most conversations revolve around SMA and Ella and how she's doing and how we're doing.  I've been defined by this awful disease and had no control over it.   So I tried to take some control.  Which led to weigh loss.  And then I created a new definition for myself...a person who is thin.  And I liked it.  At first.  But then obviously I started to lose control and spiraled into a full blown eating disorder. Another new identity.  Which I'd rather not have.  So now in...

She looks absolutely incredible...doesn't she? If we didn't know any better I'm sure we wouldn't be thinking that this beautiful child has a life threatening disease that robs her of most movements many of us take for granted. If we didn't know any better I'm sure we wouldn't be thinking how grand she looks as a standing person. Ella simply cannot stand by herself.  Seeing her in this picture is a brief moment in time that I could stare at forever. She looks tall and much older in this picture than in any other photo of her.  For starters, she is in the standing position; in addition, she is getting older. The picture above was taken on a hot summer morning and will undoubtedly become one of my favorite pictures of me and my youngest daughter.  The day after the photo above was taken I was holding Ella in church.  She was in a loving mood; she was in my arms facing me as we sang hymnals and at one point she wrapped her little arms around my ...