Everyone in the house had a red face. Energy levels were down and the heat was becoming unbearable. Our air conditioner stopped working days ago and the house was easily 85-90 degrees. We called the heating and cooling company recommended by our neighbor and they assessed the situation. As it turns out, we need a new central air conditioner and a furnace. They were kind enough to supply us with two portable air conditioners to help keep us cool. The first one is in the kitchen eating area and the second one is in the master bedroom. Ella sleeps in the master bedroom and Ava and Henry sleep on the first floor. We purchased the new equipment and will be paying for it in monthly installments over the next ten years. Installation is set for Saturday, July 6th. Lindsay's second surgery of the summer (second out of three) is scheduled for Monday, July 8th. The kids will be at their respective camps that week so she'll have some quiet time as she recovers.  Lindsay will have the ca...

Ella's summer has gotten off to a good start. Since she is confined to a power wheelchair you might think that going over to friends' houses to play would be difficult to manage. Not in this neighborhood! Ella wakes up at about 9:30 am and asks me to get her dressed and ready for the day. After we're finished with our morning routine she asks if she can go to a friend's house to see if they can play. She zooms out of the house and with her gizmo (a small watch-like device that can make phone calls) she's off and in search of friends. After being away for about 10 minutes she'll call me and tell me where she is and what they plan on doing. The families in the neighborhood are so accommodating for Ella. Sometimes they let us bring over her ramps and one of her manual wheelchairs so that she can play inside...other times the kids just play on the driveway or yard. Just recently, Ella came home and asked to be put into her bathing suit and have her controls cover...

Ella will be attending MDA Camp for the second summer in a row this summer! Last year she was hesitant to go because she didn't want to leave mommy and daddy for a whole week. She had a couple rough nights in the beginning but soon got over her fear. This year...she's ready! Just recently, we got an email from one of the lead counselors of the MDA Camp asking us to share Ella's dreams. This is something they do every year to get to know the kids as well as encourage their dreams. Ella has many dreams for herself. She wants to be a singer, she wants to walk, she wants to be independent, she wants to get married and have kids, and more. I had a whole list of ideas to share with the counselor but had to chose only one of them. I decided to go with Ella's dream of getting married and having kids. Ella loves weddings; as we went to one over this weekend. She was so enamored with the bride, her dress, and what it meant to be a bride.  Right now, however, Ella is all ...

Taking care of Ella requires a lot of lifting, transferring, and adjusting on our part. She's is like everybody else and needs to move in order to be comfortable. This movement occurs all throughout the day and several times at night. We know that there are lift systems available and maybe one day we'll get them; but for now we simply lift and move her. Over the course of the day, like you and me, Ella needs to go to the bathroom. She drives her wheelchair to the bathroom door on the first floor and we lift her out of her chair and onto the toilet. There's two ways to get her ready for the toilet.  The first requires holding her by the waist and lifting her up against our body while she wraps her arms around our neck. We then pull her pants down and place her on the toilet seat. This method makes us arch our back a bit in order for her to get a good grip around our neck and for us to balance her as we pull down her pants. Getting her off the toilet seat is done the sam...

For kids, the world can be a scary place sometimes. When they witness bad things happening to others they often wonder why it has to be that way.  Our own kids (Ava, Henry, and Ella) have had to watch their mother fight a battle against a rare and aggressive infection for four years. Then they had to be witnesses to her leg being amputated and all that comes with that. In addition to those events, they have to constantly battle against SMA each day. On the other hand, they also get to witness the good hearts of people, in our Naperville Community (Church & Prairie Communities) and other communities, many people of whom they don't even know, entering our lives and providing a helping hand. They also witnessed family rallying around us. This experience teaches them compassion and generosity. I work as a teacher in the community of Elmhurst, IL. I have been at the same school and the same grade (4th grade) for 19 years now. And when Ella was first diagnosed with SMA, the co...

Lindsay and I sat in the doctor's examination room with our baby one-year old Ella by our side. The doctor was looking at some test results and was deeply engrossed in what he was reading. Finally he said that Ella most likely has Spinal Muscular Atrophy and that there's nothing they could do for her. He advised us to take her home and love her until the disease takes her away from us. We left the hospital devastated. The actual, official diagnosis of SMA came after genetic testing was completed...that day will live in our minds forever. Ella became sick shortly after that visit with RSV (an upper respiratory virus) and ended up being hospitalized at Children's Memorial Hospital of Chicago (now Lurie's Children's Hospital). While we were at the hospital we heard that a prominent neurologist was going to be working there. We made a follow-up appointment with her. She showed us how to take a proactive approach to the disease and set us up with several machines and ...

Lindsay and I have three children...Ava (11), Henry (10) and Ella (8). They live a life that is quite different from their friends. Having a sibling with SMA (Spinal Muscular Atrophy) has weighed heavily on Ava and Henry's minds and their behaviors. We have talked with all three of them about the implications of Ella having a terminal illness and while they understand those implications they still have to live with the disease everyday. Often there is jealousy as Ella receives more attention than they do. There is resentment for having to help her with everyday tasks. There is anger and hostility surrounding the harsh facts of the disease. It's a lot for them to handle just in itself. All three children have also had to deal with their mother going through significant health issues for the past four years. With each surgery we told them that we hoped it would be the last. This has proven to be untrue. They have gotten used to the foot surgeries, the recoveries, and the afterm...