The winds are whipping the leaves around and a chill fills the air. Trees are barren of their covering and branches stand out against the bleak, dreary sky. The year rolls to its last month, promising joy, peace and hope.  The holidays are upon us for this year and the usual preparations are taking place. Our Christmas tree is up and decorated. A family affair that we embark on each year. Completed with the talk of Christmas's past; certain ornaments reminding us of people, places, and blessings.  The house smells of winter as scented candles flicker throughout the day. Christmas trinkets fill the spaces where family pictures and non-holiday decorations once stood. Lights adorn the fireplace as the wood inside waits to be lit on a frigid, wintry night. The warmth in the house, as you step in from the cold, warms your bones and is akin to the love that abounds within. Christmas music plays throughout the day reminding us of the true meaning of the holiday. Our kids are ...

Ella was taken out of her cast this past Thursday from her broken foot. Her leg atrophied a bit while the cast was on and we'll have to get her back into using it as she did before the break occurred. We are in the midst of obtaining new AFO's (Ankle Foot Orthotics) as she has outgrown her current ones. In the meantime, we are extra gentle with her as we transfer her from place to place.  As for our handicapped accessible van, the door on the ramp side is still non-functional. We took it to Superior Van and Mobility in South Bend, IN to have it fixed. After diagnosing the problem they informed us that we need to first take it to Honda to fix the issue---then we'll have to bring it back to Superior for the final touches that are required. In the meantime, the other automatic door doesn't work either unless you manually open it. So that's what we do. We use Ella's manual wheelchair (The Zippie) and place her in the third row seat and place the Zippie in the whe...

Ella's first day of school went well. She woke up early, I got her dressed and she was all ready for the annual "first day of school" picture. Her 4th Grade teacher is on maternity leave and there is a long-term substitute teacher running the class. Ella said everything went well. They did some "getting to know you" activities, had Gym, and did some other activities throughout the day. When she returned home she jumped right into her book and began reading. When I arrived home from work Ella told me all about her school day. She was excited and sounded motivated to do well this year. As a 4th grade teacher myself I know that it's a big transition from 3rd grade. There's more reading for meaning and much writing. Math gets more challenging as well. It's the beginning of intermediate type learning. The afternoon of the first day of school was fairly calm around the house. Lindsay and I stepped out onto the porch to have some "mommy and dadd...

Ella is a very social girl. She loves spending time with family and friends. She loves to go to school events and she always adores her classmates. The Fall promises that school will begin. Ella will be in 4th Grade. Many of her friends have extra-curricular activities that teach them skills, teamwork, and perseverance, as well as serving to socialize them. Ella can't join physically demanding sports because of her SMA, but there is one thing she can do---sing! She often sings songs while she plays and many times the house is full of her voice. She received a karaoke machine for her birthday in June of this year (2019). Using an app on her iPad, which is paired with the karaoke machine, she picks music that she knows and the lyrics appear on her iPad. She sings along with the tune demonstrating confidence and vigor. Several times she has brought family members to tears with her beautiful voice. Ella auditioned for the Young Naperville Singers (YNS), that will begin in the Fa...

The only sound in the house is the washing machine doing its work. The kids are off at camp and Lindsay is in the hospital. The dogs follow me around the house wherever I go--they know something's up. When I ask them where Ava, Henry, Ella and mommy are, they tilts their heads and look toward the front door. Lindsay's kidney surgery went well. They removed the tumor and 5% of her kidney. The recovery, however, has been very rough for her. When we met with the surgeon a few weeks ago he said he would make five small incisions in her abdomen.  Right before surgery (in pre-op) they told her it'll feel like five stab wounds.  She wasn't expecting it to hurt as much as it does. It hurts her to talk, laugh, or move. She is being discharged today (Wednesday, July 10) and will complete her recovery at home. She has a hard time getting in and out of bed as she must use her core to do so---and it is very sore and painful. I went to IKEA and, using donation money ,  purchased a...

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...

Yesterday (6-3-19) I waited at home while Lindsay went to see her orthopedic surgeon to have the 28 staples removed from her amputation incision. I was hoping all went well and waited anxiously. She returned and the first thing out of her mouth was that she needed surgery on her left knee. The meniscus in her knee had torn once again from compensating due to pain. We knew this was inevitable but still cringed at the prospect of yet another surgery. Her staples did come out without any incidence. The knee surgery has been scheduled for this Friday, June 7th. It should be a routine procedure with a comparatively easy recovery. Performing the surgery now will allow for her left knee to be fully healed and strong for when the time comes to get her prosthetic leg.  We still had an appointment today, on June 4th, with Lindsay's urologist regarding the mass found accidentally on her kidney. This mass was discovered after she had a bad reaction to the hyperbaric oxygen pressure chamber ...

Before Lindsay had her lower right leg amputated (due to a four year long foot infection) we did a lot of research about amputation procedures and aftermath expectations. One of the things that we found was that there is usually a period of time where the amputee grieves for the loss of the limb. But this grieving was more prevalent in those amputees who lost a limb unexpectedly. Lindsay had an advantage as she had time to process the idea of an amputation. It's been 23 days since her amputation (as of 6-2-19) and her recovery is going smoothly. She is extremely mobile using her wheelchair and her walker. And she is doing things that we never thought she'd do in such a short time frame.  She's amazing... with three kids under the age of twelve dwelling in our house and the end of the school year upon us the house was quite chaotic and messy with school supplies and school work from the year strewn all over the place. Our kitchen table was full of "stuff" and ...

The smell of freshly cut grass. The warm winds blowing through the trees. Birds chirping and squirrels scampering. People taking leisurely walks and the sound of the ice cream truck in the neighborhood. Spring is here. For months our kids have been inside playing as the winter took over. For months they have been on their devices, or playing board games, or watching movies and crafting. The time has come for them to venture outside.   Over the years the kids have built a network of friends from school. They text one another through the messaging apps or converse through games...making plans to get together. In one moment the kids will all be home and the next moment they’re on their way out the door; off to a friend’s house. Even though Ella is in a wheelchair, this doesn’t stop her from making friendships and playing outdoors. The trickiest part for her is initializing the get-together when she wants to play with someone. She cannot simply drive herself over to a fri...