A three-year-old with SMA Type 2. She can sit.  She can move her arms and legs. She cannot walk.  Her range of motion in her shoulders and hands are both compromised. She, does, however, know exactly what she wants.  And often she cannot get it herself. She wants to sit on the couch with Ava and Henry.  We put her there. Moments later, she wants to sit on the floor with a specific toy.  We oblige. Still moments later, she wants to sit on the chair with Sasa...we place her there. She wants us to carry her around, sit on our laps, go outside. She doesn't want to sit in her wheelchair.  I don't blame her. She's three and she wants to explore her world.  The frustration she feels is evidenced by the screaming and crying we have been going through lately.  Her frustration becomes ours.  If we say "no" to a request, for whatever reason, the tantrum begins.  She flails herself down, or throws her head back while screaming at ...

Lindsay and I have been discussing "stages of life" topics lately...namely relating to our kids.  Now that Ella is potty trained and has given up her nap our lives are much different than the past 5-6 years has shown us. Ava is 6, Henry will be 5 in late October, and Ella is 3.  Three kids close together with similar and yet, very distinct, likes and interests.   Gone are the days of crying being the only means of communication, although crying still permeates throughout the house!   Gone are the endless changing of diapers, although overnight the younger two wear a diaper (Ella) and a pull-up (Henry).   Gone are the days of not being able to explain the reason for things...such as parental decisions and the way the world works.   Gone are the days of chopping up the food so they will eat it.   Gone are the days of kids home all day as all three of them are now in school come this Fall!! Gone are the days of having to w...

It all started when we were sitting out on the deck one afternoon, and one of the kids said, "I wish we could sleep outside." Michael and I looked at each other, then replied, "Well, we actually CAN sleep outside if we get a tent." Of course from that point on, all we heard was, "When can we get a tent so we can sleep outside?!?!?" So we got a tent.  We needed to get one big enough to fit all of us as well as Ella's equipment and luckily we found a great deal for one at Costco :) So last Thursday night we set up camp and w e were all super excited about it :) That night we got in our PJs and sat around the fire pit and made s'mores.  Once it was dark out, we tucked the kids in bed and hooked Ella up to her bipap and feeding pump.  Of course they didn't fall asleep for quite awhile, as they were so excited :)  But eventually they did.  Michael and I stayed up a little longer by the campfire, but soon we went to bed in the tent as well....

This picture was taken after Ella had "scooted" herself away from the leg of the coffee table (behind her) to where she is in the photo.  The smile on her face really tells it all...pride, happiness, self-satisfaction, and a will unmatched by many. As we look to the researchers and their tireless work to find treatments or a cure for SMA we must live day by day with the disease.  It works itself into the fabric of our lives; primary target...Ella. The great work being conducted by so many people have gotten us closer and closer to a viable treatment for SMA.  I can remember saying, when Ella was first diagnosed that, "Our job is not to save her; our job is to keep her alive until they find a cure".   Over the past two years we have learned much about the human body, the psyche of the soul, the love of others, and the spirit within.  We continue to learn more about how best to care for our daughter.  As she grows older the challenges chang...

On June 9th, "Living Healthy Chicago" (part of WGN) ran their story about Ella and the organization, Normal Moments! Check it out!