Sunday, September 8, 2013

The House (by Lindsay and Michael)


It's time.

 We thought we would have more time, but we don't.  For 2+ years we have struggled with this...now it's time to share our struggle with you and how we have come to a decision to act.

 We knew that our current house, as it stands, would not work for Ella's long-term needs.  We have reached the point where we need to start making some permanent changes.  If we make any permanent "handicap accessible" changes, we will have to stay in this house, as we would not be able to afford these types of modifications more than once.

 We have talked and met with a bunch of people...building contractors, elevator contractors, realtors, interior designers, and architects to name a few.

 These are the things that would need to be done to our current house to make it work for Ella in terms of her independence.

 1. Have a permanent ramp put in at the front door.
  • We currently use two portable ramps for Ella to get in and out of the house multiple times each day.  However, these ramps are not meant to sit outside, exposed to the elements of the weather.
  • We thought about putting the ramp(s) so that Ella could go in through the garage (even though there wouldn't be room with both cars in the garage), but the entrance through our laundry room is too tight for her power chair to maneuver around.
  • There is an organization (DSCC) that will fund a permanent ramp for our front door, but they will only do that once.  So if we ever needed to move, we would have to pay for another one ourselves.
  • We would also like to have a ramp built that would allow Ella to go from our deck to the backyard.
Portable ramps at the front door
The garage entrance through the laundry room
The stairs leading from our deck to the backyard

 2. We need an accessible bathroom for Ella.
  • The kids' current bathroom (upstairs) is perfect for children.  However, Ella's wheelchair would never be able to manuver in it;  and as she grows, it would be difficult and dangerous for an adult to bathe her and help her go to the bathroom without proper space and modifications.
The kids' bathroom
3. Ella needs to be able to access her bedroom and the basement in her power wheelchair.
  • This is a big one.  The only way to achieve this is with an elevator.  
4. We need another bedroom.
  • This is also another big one. We currently have three bedrooms and the girls are sharing one of them.   We are finding that the available space is quickly becoming limited as the kids grow alongside Ella's medical equipment.   Eventually her power wheelchair will be part of the mix and before we know it we will be out of space.
  • We've talked about different ways of adding another bedroom, and there aren't many options, as Ella would need to be on the second floor with us (we tend to her needs throughout the night so we need to be close to her room).  The only feasible way we could do it would be to add on to the back of our house and then build up.  This option means you would have to walk through the master bedroom to get to the new room. But we could then modify our current master bathroom to make it accessible for Ella and we would share it with her.  The biggest problem with this solution?  We have been given estimates which are upwards of $200,000.
Ava and Ella's bedroom
Some more of Ella's equipment and supplies (in the closet)

5. We need more space.
  • Ella's equipment is taking up more and more space in our house, making it more difficult for her to navigate around in her power wheelchair.
Our living room with Ella's power chair, gait trainer and adaptive chair
Our family room with Ella's power chair and stander (in the back corner)

So after a lot of thought and discussion, we have decided that rather than trying to increase the size of our current house (a very costly endeavor) it would be significantly more cost efficient (by $75,000+) to move into a slightly larger house that would accommodate Ella's needs in terms of space.  We would then add the handicap accessible modifications as needed. 

This is a little hard for us, because we've really grown to love our house.  We've put a lot of work into it since we moved in 7 years ago and we've created so many happy memories here :)

We'd like to stay in Naperville (District 203) because of the outstanding school district and incredible support that they have for Ella, as well as the many friendships we have formed with others in Naperville.  There are many other outstanding school districts in the area, but Naperville will be more affordable for us, without being too far for Michael to commute to Elmhurst.

We think that we will probably end up purchasing a four-bedroom, two-story house (eventually installing an elevator), simply because there aren't many ranch-style houses in the area that would be big enough and open enough for all of Ella's needs.  Plus, even if we found a ranch, we'd end up needing an elevator anyway, so that Ella could go down the basement.  However, we are not ruling out the possibility of finding a ranch that could meet our needs.

So a rough timeline would look something like this:
  1. Put our house on the market early next spring (2014).
  2. Hope that we are able to sell the house in a timely manner and find a new house that we will be able to modify to fit Ella's needs.  It would be great if we could be in the new house by next summer.
  3. Have DSCC install a permanent ramp for Ella to get in and out of the house.
  4. Make any "easy" modifications (switch carpet to hard floors if needed, make the backyard accessible, etc.).
  5. Within a year or so, have an elevator installed and modify a bathroom.  By that point, Ella will be at least 5 years old, and it will be much more necessary for her power chair to go up and downstairs (as she will be getting harder to carry at that point).
What does all this mean?  It means we have our work cut out for us.  It means we have to find a way to provide our family with a safe, welcoming environment that meets the needs of each of our kids, and us.

It means we must put aside our own feelings for a moment and step outside of our comfort zone.  By doing so we place ourselves in a position of asking for help.  Serious help.  The kind of help that will  bring about a change not only for us, but for those who lend a hand.  

We need your help.

The help that we are asking for comes in many forms.  No one form is more or less important or appreciated than another.  As with any life situation there is a bottom line coupled with a goal;  a place we can set our sights on, plunge forward with all we've got, and go for it.

The bottom line here is $125,000.

This enormous amount of money would bring to Ella a life that she deserves.  A life of independence that many take for granted.  A life filled with purpose that we all need and crave.  A life of knowing that despite her debilitating disease, she too, can be productive, responsible, and part of a family...just as anyone else can.  A life that, in the face of escalated uncertainty about her longevity on this earth, will allow her to experience those unforgettable moments that makes childhood just what it is...a time of innocence, discovery, and unconditional love.

We're not asking for people to reach deep into their pockets without first recognizing that there are several ways we could use your help to achieve what God has lain before us.

Look closely at the following list.  Is there something on it that maybe you could help with?  If so, please find that special place in your heart that yearns to be a philanthropist. Search for that place while keeping in mind the sweet soul known as Ella Casten.

The Casten House Help List:
  • If you know a contractor, electrician, or plumber with home modification experience, pass the names along to us.
  • If you know someone looking for a beautiful house in a quiet neighborhood with outstanding schools...send them our way.
  • If you know someone who might be, or is, selling their house that looks like it may be a good fit for our needs...send us their way.
  • If you enjoy putting together fundraisers of any kind, please share with us your ideas.
  • If you believe in prayer, say one for us.
  • If you know of people or businesses that would be interested in our products on Mama Bracelets, please share our information as we are beginning to rely on Mama Bracelets for some extra cash in hand (www.mamabracelets.com).
  • If you know of a realtor or lawyer who would be willing to work for a reduced rate or even donate their professional expertise and/or time in the name of helping Ella with her needs, please let us know.
  • If you know of an organization, business, or charity that is looking to sponsor something, you can let them know about Ella.
  • If you have any connections to the media to help spread the word, a lead in that direction would be great! 

We have been extremely fortunate to be surrounded by so many people who have helped in so many ways thus far.  We would be in a disastrous mess if not for the generosity and compassion of all who have crossed our path. 

It is difficult for us to reach out in such a way; call it pride, self-sufficiency, or whatever you will.  However, this "pride" we carry around with us pales in comparison to what we know we have to do for our Ella.  We willingly, and with honor, humbly swallow that pride and reach out to you for help.

Please consider what you might be able to do for us... 

With love,


 To learn more about Spinal Muscular Atrophy (SMA), take a moment to watch the following video (created in 2011):



 A message from Ella:

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