Found...(by Michael)

circa: 2006

We found a home here,
We're leaving the house.

We found a family here,
We're leaving our footprints.

We found our church here,
We're leaving with prayers.

We found traditions here,
We're leaving with the promise of more.

We found ourselves here,
We're leaving stronger than we came.

We found our pleasures here,
We're leaving with memories abound.

We found disease here,
We're leaving with an appreciation for life. 

We found life and death here,
We're leaving with a deeper understanding.

We found our weaknesses and strengths here,
We're leaving the latter behind and the former in tow.

We found our skills here,
We're leaving more confident.

We found friends here,
We're leaving richer for it.

We found love here,
We're leaving surrounded by it wholeheartedly.

I'm Gonna Keep It...(by Michael)

Rummaging through years of stuff elicits a reminiscent quality that so easily takes one back to different times.  Some of those times seems easier, others more difficult.  Some feel simpler while others dredge up the confusion that was present when it was actually occurring.  Some make you smile while others bring back the pain endured for whatever reason.  Still some take you into a world where you almost re-live the events surrounding the object.

The object below is of the last kind...one that brought me to a place and held me there for some time.

Before Ella was diagnosed with SMA Type 2 we had no idea what was really happening with her.  All we knew was that she was missing developmental milestones and struggling.  One of the hardest aspects of all of this, as a parent, was the feeling of helplessness.  Watching your child struggle, fight, and exude extreme determination to accomplish something they should be able to easily was torture.

I made this contraption for Ella.  We wanted something for her to be able to lie an on use her arms to propel herself.  She still had that kind of arm strength as well as head/neck strength.  I spent the afternoon at Home Depot with a kind man who spent so much time with me deciding the shape, the kids of wheels, the strap system, etc.  I went home and sat in the very garage that this picture was taken and sanded the piece of wood to a smooth finish so as not allow a single splinter to invade my daughter.  I measured and precisely placed the caster wheels and the strap holders.  It was beautiful.

Ella used it for only a very short time.  Her inability to navigate coupled with her intense regression (at that time) made it very difficult for her to use.  It became another source of frustration for her during the road to the diagnosis.

I kept it though.  I kept it because I thought one day she could use it.  I thought that with practice and sheer will that she would overcome whatever was blocking her development.   I thought that we would look back on the time and remember it as a distant memory as we watched her play soccer, or dance ballet, or run track & field.

I kept it because it was one of the first things I actively did to try and help her.

I am going to keep it still.

  

Unexpected News (by Lindsay)

Yesterday I took Ella to her biannual checkup with her orthopedic surgeon, Dr. Grayhack, at Lurie Children's Hospital.  She goes every six months to check the curve of her spine, as well as other joints.

I brought with us the disc that had her most recent spine x-ray, but Dr. Grayhack decided to also do an x-ray of her pelvis as well, so that we'd have a baseline as we've never looked at it up to this point.  We all assumed it would be fine.  

But it wasn't.

Ella's left hip is two thirds out of the socket and her right hip is on it's way.  Her hips are dangerously close to being completely dislocated.  

This is not uncommon for children with SMA.  With Ella's muscles being weaker, they aren't able to hold her joints in their proper places.  

But this came as a huge shock to all of us, as Ella's hips appear to be fine from the outside and she has never complained of any pain in that area.  

But a dislocated hip can become a problem down the road.  It can become quite painful for Ella, and the farther out it goes, the more difficult it is to correct it.  

Dr. Grayhack told us that since the hip will not go back in by itself (and will only get worse in time), the only way to fix the problem is with surgery.  It's not a simple surgery, as both of her femurs would be cut completely and plates and screws would be placed to properly align the hip joints.  

But there are risks with any surgery, especially for a child with SMA.

Children with SMA are at a much higher risk for respiratory problems after surgery that could lead to permanent problems.  For example, she might become more dependent on her BiPap (she currently only uses it at night).  Dr. Grayhack even used the word, "trach," which I'm hoping was a bit too extreme.  But he did mention that she is currently very strong in the respiratory sense.  But as time continues, she will gradually become weaker.   

Ella will lose strength during her recovery from the surgery.  She will have a cast/brace with a bar between her legs to keep her hips properly aligned during recovery, which will prevent her from doing her daily/weekly exercises that keep her strong.  We don't know if she will regain that lost strength.   

Ella will have periods of fasting before, during and after surgery.  Children with SMA should not go more than four hours without nutrition, as their bodies start using muscle mass for energy.  She would require IV nutrition during this time to prevent as much muscles loss as possible.

Dr. Grayhack told us that Ella would be in the hospital for at least four days, exposing her to countless germs that we're used to avoiding.

So that's it.  We have a decision to make.  Luckily we have some time to make that decision.  Dr. Grayhack thinks that if we do the surgery, it should be done within the next three to six months.  Ella has her SMA Clinic appointment with the rest of her team at Children's in May, so we will most definitely discuss the possibility of surgery with them. 

For now, we'll pray.  We'll pray for guidance in making this decision.  We'll pray that Ella's hips do not completely dislocate.  We'll pray that she remains pain-free.  And above all, we'll pray that the doctors and researchers can find a cure for the thousands of SMA babies out there struggling right now.

Childhood Fears...(by Michael)

Ella playing by herself in the basement

The small sticky pads that sit under Ella's eyes, covering and protecting her skin from the straps of the bi-pap mask, had one large drop of moisture on each of them.  The moisture came from tears streaming down her face, being absorbed by the protective pads.  The tears a result of fear.

Fear of being alone.  

Ella has developed this fear as of late; not wanting mommy or daddy to venture too far from her; wanting to sit on our laps more often; not wanting Ava to climb up into the top bunk...out of sight.  She simply doesn't want to be alone.  

We know that this fear is something that most kids go through.  The timing, however, promises to make things a bit more challenging.  We are set to close on our new house in late April.  Once that happens the kids will each have their own bedroom.  They know this.  Ava, being six years old, is looking forward to having her own space; Henry has had his own room for quite some time now and quite honestly is looking forward to everyone having their own space so he doesn't feel so isolated from the girls.  Ella, on the other hand, seems to be approaching this transition with trepidation.

The other night, when I went into her room as she was crying about being alone, I couldn't help but think about what it must be like for her.  There she sat, on her bed with her fears. Without the ability to move herself; to seek out a person to cuddle with, to take it upon herself to solve her issue in a way that most kids can and do.  She was just sitting there, in the same position that Lindsay had placed her moments before,  with tears rolling down her cheeks and being absorbed by her sticky pads.  All the while saying she doesn't want to be alone.

It's hard for Ava and Henry, too.  For they are mobile under their own power and move freely about the house without a second thought.  Lindsay and I find ourselves telling them not to leave Ella by herself.  In essence we are telling them that they, too have to remain in a certain place because of SMA.  They often oblige, yet sometimes resist...we understand and adjust accordingly.  

We know this fear will dissipate.  We know it might take a bit longer to do so simply because Ella's ability to confront her fear and then do something about it in terms of physical space is hindered by SMA.  As so many parts of her life it will just take longer, look a little different, require extra help from us, and work itself out.  

As we go through this with Ella we hold fast to our promise that, "We are not here to save her, we're here to take care of her and keep her alive until they find cure."    

That Tiny Space; So Filled...(by Michael)

The feeling was warmth.

The feeling was inclusive.

The feeling was as if arms were wrapping around us in an eternal hug.

St. Timothy Lutheran Church, our church, brought to us a night of warmth, inclusion, and hugs as they hosted a Bingo Fundraiser for Ella.

Young and old came from near and far to sit for an evening of white elephant gifts, candy and popcorn, pizza and pop surrounded by the infectious sounds of the classic bingo game.  A night that is etched not only in the memories of our family, but in the minds of so many who were involved.

A parishioner approached me the day after the fundraiser to express her exhilaration about the event.  She knew that the Bingo Night was successful simply by the attendance therein, yet she marveled at the young people who took a part in it. She was thrilled by the fact that compassion was experienced by these young people first-hand rather than them simply being told to be compassionate.  She called it their "witness".

As the parents of Ella we can only sit in wonder and awe at how God works through so many to take care of one of his children.  He orchestrates talents and ambitions, personalities and skills, love and labor to bring about His glory, His agenda, His will.  And through it all Ella benefits from the blessings that He has bestowed upon her, as do all whom had a partaking in the event, whether it be as a planner, a worker, a donor, a participant, or simply an onlooker.  He has moved His hand over the tiny space known as St. Tim's in Naperville and brought to Ella a chance for her to be all that He intends for her to be.

She's a fortunate girl, that Ella Casten...and we are fortunate to be part of her journey; as it's through her journey that we are finding the Truth and compassion that is meant to be in all of us.

Our Next Life Chapter: A New House! (by Michael & Lindsay)

The decision to put our house on the market actually took quite some time.  We had to first ascertain whether or not our current house would be able to accommodate not only Ella and her needs but also the needs of Ava and Henry; not to mention us, and of course our beloved dog, Sasa and our now single cat, Doublestuff.

From that distant thought the list of accommodations, remodeling, use of space, and storage is a list that seemed to grow as we were making the decision.  And while Ella is a phenomenal driver of her power wheelchair, the space she had to work within often presented challenges; repairs here and there were cropping up more frequently.  The kids were growing and the house, in contrast, seemed to be shrinking.

Yes, it took quite some time to finally pull out the stops and put our house on the market.

Many months ago, when we first planted the seeds of our plans,  a church member who is also a realtor, stepped forward and offered us her services.  Sandy Turnipseed (Naper Home Realty) not only stepped forward, she stepped into our lives, our home, our trials, and our search for the house that would provide everything we needed to raise our kids in a healthy, independent environment.

With the expertise that Sandy holds in the real estate game she miraculously sold our house in a mere 14 days.  That's right, 14 days!  Her advice, her confidence, and her delightful personality all played a role in marketing our property...and furthermore played a role in us finding just the right house for our special needs.

Once we accepted the offer on our current house, we knew the race was on to find a new house (our buyers would like to close at the end of April).  We had already ventured out to see close to ten houses, none of which would work for Ella and her wheelchair for one reason or another.  We were feeling quite discouraged.  But then we were fortunate to find a house that we feel can be modified to meet Ella's needs!  And we felt really good about this house.  We thought this could be "the one".

We put in an offer on this new house.  And we waited.  The owners countered our offer.  We then countered theirs.  And we waited some more.  Finally we came to an agreement and we will be buying the house!

The house is located on a quiet street in central Naperville.  Compared to our current house it's closer to downtown Naperville as well as to our church.  It also happens to be four houses away from the elementary school!

But most importantly, the house has the features we need to make it work for Ella on a long-term basis.

It has wide open doorways that her wheelchair will easily fit through:

Foyer looking into the living room

Dining room looking into the living room 

It has more square-footage than our current house, which means larger rooms for Ella to navigate through:

Family room

Kitchen

Open foyer

The entrance from the garage is a straight shot through the laundry room into the family room.  In our current house, Ella's chair cannot navigate through the turns of our laundry room, which means she can only enter the house through the front door.  In the new house, she will be able to enter through the garage so that we will not need a ramp at the front door.

Standing in the family room, looking through the laundry room to the door to the garage

She will have a large bedroom to accommodate all of her furniture and equipment with room for her wheelchair to navigate once we get an elevator:

Ella's bedroom

The kids' bathroom upstairs has plenty of room for Ella's wheelchair to move around and has the capability to be modified into an accessible bathroom when the time comes.

The kids' bathroom

The basement is a blank canvas to be made into an accessible playroom (with an office).

Basement

The deck is low to the ground, which will make it easy to build a ramp for Ella to have access to the backyard.

Deck and backyard

While this house is structurally ready for Ella, we still have a lot of work that needs to be done.  But luckily, there aren't too many major remodeling projects.  We need to paint the entire interior house (we love the white trim in our current house!), including the kitchen cabinets.  We need to fence in the backyard.  A few things came up in the inspection that will need attention.  And we plan to finish the basement at some point.

But we couldn't be more excited to start our next life chapter in this house!

We know that purchasing this house could not have been even remotely possible without the love, generosity, and sincerity of so many people; near and far, young and old.  It truly does take a community to raise a child!

Of course, if you know of anyone who would be willing and able to help with the work we need to do, please let us know.  Some areas that need work:

1. Painting
2. Minor electrical work
3. Minor landscaping
4. Possible plumbing work
5. Finish the basement
1. utility room
2. storage closet
3. office
4. drywall & insulation
5. drop ceiling/lighting
6. flooring

Things are moving quickly (closing for both houses is currently set for April 30th)...and as said before...we are really excited to start this next chapter of our lives.

Our Life Began...(by Michael)

Pastor David Miller of St. Timothy's Lutheran Church (Naperville, IL) with
Ella Sabine Casten on her baptism day.

He sat in our family room, a rather tall man, legs crossed, relaxed in the chair, the dog with her head upon a resting place on his leg.  He scratched under her ear as he spoke with us.

The conversation took many turns.  It resonanted of individual pasts, collective consciousness, and rituals dictated by those whom came many years before us.  It contained laughter, tears, and stoic contemplation.  It was both comfortable and uncomfortable as it dug deep into what beliefs were held by three people.

As he shared his experiences, spoke elequoently about Christian traditions, and listened with an ear that devoted itself to the one speaking, his eyes never lost their twinkle; never wavered from his soul.

It was that conversation that brought Lindsay and me to St. Timothy's Lutheran Church in Naperville, Illinois.  It was that conversation that ended a long two-year search for a church community that we could embrace.  It was that conversation that opened the doors to what we now know as our spiritual home.

Our children are happy at St. Tim's.  They thrive in the loving atmosphere that surrounds the entire congregation every time we find ourselves there.  They delight in the friendships they have made, the adults whom take time to talk, play, and learn with them.  They hum the tunes of the hymnals, with the promise of one day singing along.  They say the Lord's Prayer without thinking twice.

Ella was baptized at St. Tim's.  We knew nothing of SMA; let alone the fact that the disease was in her body, planning its arrival.  We were surrounded by friends and family that day.

There have been scores of baptisms at St. Tim's since then.  We have attended others at other churches as well.  There is one part of the baptism service that rings loud and clear to me now...as it never really did before.

It's the part when the spiritual leader turns to the congregation and asks if they will accept the child being baptized into Christ as "their own".  If they will care for, nurture, and guide the child.  Of course, the congregation always responds, "Yes" in whatever fashion is appropriate.  The ceremony continues, the child is baptized, and life moves forward.

For us, life took an unexpected turn.  The diagnosis of SMA came in like a flood.  It washed over our entire life, filling every crack and crevice.  It brought with it damage and opportunity.  It also elicited the St. Timothy community to honor their promise.  The promise made on her baptism day that they would care for Ella.  The promise that they would be there for her.

They have been.  They are.  And they continue to be.

We are truly blessed by the people of St. Tim's.

On March 22, 2014, through the love, compassion and promise that was made, St. Timothy Lutheran Church is hosting a fundraiser for Ella.  They've named it "Growing with Ella"...a beautiful name that brings forth the true meaning of their promise.  

Below you will find the pertinent information regarding the fundraiser.  If you are able to attend we would love for you to meet our community of family at St. Tim's.  If you could share this post, we would love to meet your friends and family who might attend.

As he left our house, Lindsay and I knew that Pastor Miller represented the entire congregation of St. Tim's...and we knew our search for our spiritual home had ended and our life had begun.

Please visit the Facebook Event Page at:

"Growing with Ella"

Short Time-Long Life...(by Michael)

February is coming to a close.  The shortest month of the year yet it feels like it dragged out forever.

Starting with the frigid weather that kept everyone indoors.  As the month wore on so did the bothering between the three kids.  Much crying, whining, teasing, and screaming filled the house, echoed off the walls, and sent Sasa with her tail between her legs more than I've ever seen before.

We closed Mama Bracelets and had to work through the task of tying off all the loose ends...some still exist. At first we thought closing the business would be an easy thing to do emotionally speaking, but we found out different.  We actually had a twinge of sadness with the closing of Mama Bracelets & ellaWEAR Jewelry.  Mind you, we are not thinking twice about this decision, just didn't expect the emotional piece to hover about.

We put our current house on the market.  Needless to say, leading up to the time it went on we did all the necessary "touch-ups" in-between work, kids, therapies, classes, meals, and daily household chores.  The house is immaculate...and with three kids who are basically stir-crazy right now, it has been quite the challenge keeping the house in showing condition; we do have our system and we work well within it.

The month of February brought a second job into the Casten household.  While Mama Bracelets did bring in some extra money, much of it went to SMA research efforts or directly to Ella's fund...very little was allotted to the Casten Monthly Budget.  Besides, it wasn't steady income.  Once Mama Bracelets was dissolved, we felt that a steady second income was needed...the ends just weren't meeting and the gap between them was growing larger over time.  After some lengthy discussions about whom should take what kind of job we felt it best if I take on tutoring.  With that being said I created a website and Facebook page, got the word out about my services and within a week I had three clients (four now!).   Of course this means longer working hours for me and longer working hours at home for Lindsay.  Our "together" time is now more precious than ever...dwindling as it may.

We've been house hunting.  This time it's different.  The parameters in which we must operate within while seeking a house is beyond what we've done before while house hunting.  Not only do we have to make sure it will accommodate our family of five (plus a dog & cat) with enough room for the kids to grow, we also have to make sure that the floor plan will be conducive for Ella to use her current wheelchair and any future chair she will have.  Not to mention her current adaptive and medical equipment as well as future ones.  And of course there are the home modifications that will need to be made; a stair-glide, permanent ramps into the house (be it through the front door or preferably through the garage), a modified bathroom, and eventually an elevator.  Yes, our parameters are different and as we are finding...challenging to fulfill.

Then there's SMA.  As I'm sure you've gathered from knowing us, winter is the most precarious season in terms of overall health for kids afflicted with SMA.  A simple cold can turn into catastrophe.  During the month of February many kids that we know from the SMA community fell desperately ill...some are still fighting as I write this.  They're surrounded by family, friends, thoughts, and prayers.  Several kids have passed away this month; a loss unimaginable.  News such as this always runs through me with coldness and trepidation.

The night before this post was written, Ella visited the ER.  I'm sure the staff at our local hospital are becoming all too familiar with our visits. SMA has many repercussions besides the muscle atrophy...among them is the fact that bone density is compromised from the lack of weight-bearing pressure.  With this, kids with SMA are far more susceptible to fractures and breaks.  During an assisted bathroom break Ella was placed in an assisted standing position as per usual.  The one difference this time is that she was not wearing her AFO's (ankle-foot orthotics).  Before we knew it her legs simply gave way, "crumpled" if you will.  Gravity pulled her down quickly and her delicate ankles bore the brunt of her upper body weight.  Needless to say she cried in pain.  Her tears, genuine and heartbreaking, led us to take her to the ER to check to see the extent of any damage. Fortunately there was no fractures, no breaks.  It was good to see her resting in her own bed that night.

As Lindsay had Ella at the ER and the other two were in bed, I felt an nagging lump in my throat, a sort of numbing sensation filled my stomach, and my thoughts raced in several directions.  Unnerving. Uncomfortable.  Unreal.

The shortest month with the longest life is coming to a close. We have much to do in the coming months.  We have much to do.  

And So It Begins (by Michael & Lindsay)

Months of talk.  Weeks of making decisions.  Days of planning.  Hour after hour of final preparations.  Minutes to seal the deal.

Our house is officially on the market as of Feb. 19, 2014.

We reached out to family, friends, and strangers with a plea for help...a plea for Ella.  We had always known, since her diagnosis was confirmed in 2011, that our house would either need major renovations to accommodate her needs or we would have to move into a house that could do the same.

It became quite clear the path we must follow.  Our current house, while we love it, simply would present us with a major financial obligation to properly renovate it for Ella.  After contemplating the "sign-post" in the fork-in-the-road we made the commitment to raise money, sell our house, and find a new home.

The outpouring of generosity from so many people, near and far, close to our hearts and strangers, allowed us to actually make our plans to move forward.  To date we have raised 34% of our initial fundraising goal.  This incredible amount of money will allow us to buy the house that will be modified for Ella.

Yes, there will be work to be done in the new place.  Yes, we will still need help.  Yes, we will now reach out to the State of Illinois as a provider of accomodations for those with special needs; permanent ramps, a stair-glide, and other medically necessary equipment.  

There are, however, items that the State will not provide...namely the actual home modifications...modified bathroom among the first, and eventually an elevator.  

We are excited.  We are nervous.  We are going forward full force and feel confident that we will sell our house and find one that will work.  We know we have an army of family, friends, and strangers behind us...and quite frankly, we couldn't accomplish this for Ella without each and every one of you...whether you support us emotionally, spiritually, socially, or financially.

And so it begins...

Presenting:  

2020 Cobblebrook Lane, Naperville, IL

(click the address to be taken to our listing on Realtor.com)

Make-A-Wish (by Michael and Lindsay)

Several people, over the past two years, have spoken to us about "Make-A-Wish" for Ella.  We've hesitated to pursue this for Ella thus far because we felt she was a bit too young...we really wanted her to actively be part of the whole process.

We put it on the back burner and went on with our lives.

Then, about a month ago, the nurse at Ella's school called us to say that she nominated Ella for a wish through the "Make-A-Wish" foundation.  This came at an opportune time in terms of Ella's age.  Lindsay thanked her for the nomination and we began working toward the wish to be.  The "Make-a-Wish" foundation has contacted us and let us know that she was approved for a "wish".

We will meet with the "Make-A-Wish" volunteers so they can get to know Ella and us and get things rolling!

We are so excited!