She Loves Your Feelings...by Michael

We waited in the waiting room for what seemed like an eternity.  Just Lindsay and me.  It's not often that we get to spend uninterrupted time together; silent time; reflective time.

We talked about her eating disorder, SMA, my work as a teacher, and iPhones.

The waiting is over and Lindsay has checked herself into Linden Oaks to pursue professional help for her eating disorder.  She says ED is beginning to spiral out of control and knows she needs to "break the cycle".

I missed her dearly when she went to Linden Oaks two years ago.  I will miss her even more this time 'round since my love for her has grown.  I know she must do this for herself and our family.  I also know an eating disorder is a complicated, complex disorder that few can truly understand, unless of course, you've experienced it first-hand.

The road to recovery from an eating disorder is a long, fragile journey.  She will travel through it with grace, dignity, and strength...and with all of us right behind her.

She feels your love.  She loves your feelings.  She will do what she has to out of the love for her family...for her love is stronger than any disorder; and she will recover.

Fracture Update (by Lindsay)

Ella's follow-up appointment with the orthopedic surgeon went really well.

He told us that what happened is called an "incomplete fracture" since there is no actual crack, the femur just bent a little.  Fractures and "bends" are a little more common for children with SMA, as their bones are not as dense due to limited weight bearing.

Anyway, she didn't need a cast and she was able to take the ace bandage wrap off!  She just needs to take it easy for the next 4 weeks.  The only way she can make the injury worse is to bang into the same knee again, so we keep reminding her to slow down in her power chair :)

Thank you all so much for your kind words and prayers for Ella!!

A Small Fracture (by Lindsay)

Today while we were enjoying the beautiful weather at a playground, Ella was driving her wheelchair (at full speed) and for a brief moment, took her eyes off of the path that she was traveling.

The result??

She ran knee first into a picnic bench.  Hard.

She was pretty hysterical and her knee immediately turned red, blue and purple, so we decided she should head to the ER for an x-ray.

It turns out she has a small bend to her femur, which technically counts as a fracture.  The doctors put an ace bandage around her leg until she follows up with a pediatric orthopedic doctor within the next week.

Poor Ella is miserable :(

She finally passed out from crying when we got home...but then woke up screaming about 20 minutes later and we're having a very difficult time calming her down :(

Please keep Ella in your prayers for comfort and fast healing, as we hope she doesn't have any regression due to this injury!

A Patch of Grass; A Patch of Dirt...(by Michael)

     Ella's look often falls into a gaze as she watches her siblings and the neighbor kids run, jump, and climb.  Her wheelchair sits silently in the grass waiting for her to push the joystick, bringing it to life.


     Without missing a beat she grabs hold of her controls and charges forward over the rough terrain.  Each bounce of the chair over the lawn gives her muscles practice at maintaining her posture and head position.  She joins the other kids in the only way she know how and begins laughing, playing, and "running" around.  

     I often wonder what goes through her mind as she watches people.

     We were at the playground just the other day.  After her 10 minute swing fix, she wanted to cruise the ramps.  There was a little girl slightly younger than Ella who was running up and down the ramp.  For what seemed like an eternity to me Ella simply sat there and stared at the girl.  Every time the girl turned her back to Ella and ran up the ramp I could see Ella's eyes track the little girl's legs, from waist to foot, her expression cold and stoic.  She seemed to "snap" out of it and took charge of her chair, racing up the ramp, often circling the little girl.

     Ella's awareness of what it means to have SMA continues to grow.  She knows no other way of life.  And despite being confined to a wheelchair, having limited mobility and strength in her arms and legs, she is a happy-go-lucky kid; enjoying what the world has to offer.  

     My awareness, of course, is reinforced every day of my life.  Watching her as she grows, as she socializes, as she sleeps, as she laughs, and as she cries has provided tremendous insight into life itself.  As I was pushing her on the adaptive swing in our yard I noticed that the ground underneath her swing is lush grass; vibrant and full of life.  The playground equipment next to her, a hanging bar and a traditional swing, hover above a patch of dirt with weeds trying to grow.  Each time Ava or Henry, or any neighborhood kid, scrape their feet along the ground to start or stop their swing, or use the ground as a landing pad of sorts, they wear down the life of that patch of dirt.

     It's odd to see, I must admit; underneath a swing set, as plain as day...a patch of grass; a patch of dirt. 

     It does, however, represent what our life is like at times.  While SMA can be riddled with heartache, frustration, confusion, despair, depression, and anxiety...it too, can hold beauty in its grasp.  The beauty of those afflicted with this disease lies in their infectious personalities, obvious intelligence, and perseverance...

...they are truly a patch of grass amongst a patch of dirt. 

Anorexia (by Lindsay)

I'm not sure where to begin, so I guess I'll just jump right in...

My eating disorder is back in full force.  I've been struggling for the past few months and I've lost quite a bit of weight, putting me in the "underweight" category of BMI (body mass index).

I'm starting to realize that the transition into the spring season is the most difficult time of year for me.  Everyone starts to play outside, enjoying the nice weather.  Most of my friends have children the same ages as Ava, Henry and Ella, and they're becoming more and more independent each year.  My friends can have play dates or go to the playground and socialize with the other moms, while the kids go off and play together.  On their own.

On their own.

Ella cannot play "on her own".  

It's hard for me to come to terms with the fact that Ella will never truly be able to function "on her own".  And ED (my Eating Disorder) is my coping mechanism.  

I know it's not healthy.  I know it's not smart.  But I'm at a point where I think I truly need ED in my life to function.  

But it has to change.

Over the past few weeks, I have been to a handful of specialists, trying to "fix" this disorder that I have. 

I've been to my dietician.  Two new therapists.  My primary care physician.  And today, my psychiatrist.  I've had tests done (EKG and blood work - both normal..."so far" I've been told).  But nothing has been helping.  I can't get away from the idea that ED helps me.

But my appointment with my psychiatrist today really hit me with a dose of reality.  She's giving me three weeks.  She told me that if I can't turn things around and gain some weight, then I'll have to go back to the Eating Disorder Program at Linden Oaks Hospital.  

Wow.

I really can't believe it's gotten to that point.  

So I have to change.  I HAVE TO. 

But it's so complicated.  Right now, I feel like no matter what, I'm a failure.  If I gain weight, then I've failed ED, my only coping mechanism.  But if I lose weight, then I've failed my family.  Naturally, my mom asked me, "Which is more important?  ED or your family?"

It's obvious.  I have to change.

For Michael.  For my babies.  For my family.  For my friends.

I will.  And I have three weeks to prove it.

Growing toward "the day"...by Michael

     Sitting here, in the wee hours of the early morning, the house lay quiet with the exception of the occasional call from Ella to be turned or one of her machines going off for one reason or another.  

     The days, however, are a different story.  The flurry of activity is no flurry at all.  It's more like a whirlwind.  Our house provides ample space for the kids to "run and roll" at near top speeds, chasing one another in endless circles, loops, and figure-eights throughout the first floor.  Furniture safely sits idle, never in the way, walls and corners are free from destruction caused by an errant wheelchair maneuver.   Even Sasa seems to enjoy watching (and sometimes joining in) the fun of "run and roll".

      As Ella grows so do her needs.  They are evolving though.  Her basic needs remain the same...assistance with using the washroom, getting dressed, bathing, overnight assistance, lifting and moving certain objects, etc.  Other needs, however, are forming.

      Her need for understanding her disability is coming forth.  She talks about her SMA more often.  She even role plays with her dolls and stuffed animals with SMA being a central theme.  She is beginning to differentiate between what she does and what others do as a function of the SMA (going to therapy, doctors, her braces, etc.).  She is realizing some of her physical limitations.

      In fact, all three kids are crossing a bridge of understanding SMA.  They are asking more questions, developing skills to compensate and personal opinions of the disease itself.  They look forward to the day when the "SMA is gone"...as do we all. 

 

"Her Hope" published Sept, 2012.

Birthday Girl!

Happy 4th Birthday Ella!!

A Bit of Understanding...(by Michael)

I overheard a conversation,

     the turns it took silenced me.

A mother talking to her child,

     trying to make her see.

Why does she get the things she does?,

     pleaded the innocent child.

She sought an answer,

     and one more than just 'because'.

The mother sternly spelled it out,

     the trials the other faces.

How she can't do many things,

     how she cannot go many places.

The conversation quickly turned,

     to a reality as I let out a heavy sigh.

The mother with a chill in her voice,

     said SMA will make her die.

The child stood erect and tall,

     her eyes fixed and steady.

The mother ask for understanding,

     the child answered when ready.

The child's voice spoke with a quiver,

     her hair was all a mess.

And with the innocence a little shattered,

     she answered with a 'yes".

Special Spaces Room Makeover! (by Lindsay)

Yesterday was a very special day for Ella (and our entire family).

But first, let's back up.  Several months ago, I received a call from one of Ava's friend's mom, Dina.  Dina told me that she hoped I didn't mind, but she nominated Ella for a room makeover through a national organization called Special Spaces, and they picked Ella!  I was so surprised!  Definitely not a call I was expecting.  Dina was so inspired by Ella and her story, so she wanted to do something nice for her/our family :)

At the time that Ella was picked for a room makeover, we were still in our old house so we wanted to wait until we moved to have the makeover happen.  Of course Special Spaces agreed.

Once we were in our new house, the Special Spaces team (led by Kelly Knox) came to meet Ella and our family and to see the room.  They wanted to know what we'd like changed and any ideas that we might have for the new room.  

We discussed that we'd really like for Ella's medical equipment to be hidden during the day.  We don't like that her bedroom looks more like a hospital room due to all of this equipment next to her bed (for nighttime use).

Kelly also wanted to know what Ella wanted her room to look like.  Ella picked some pink bedding that she liked and said she wanted a tree with flowers on the wall :)  She also said she wanted a rug.  

Over the course of several weeks, Kelly and I exchanged countless emails, phone calls and texts discussing other needs/wants that we had in mind for Ella's room.  The anticipation was building and Ella couldn't WAIT for her new room.

Finally the day was here!  Our whole family had to be out of the house for the entire day, so that we would be completely surprised for the "reveal" at the end of the day.  Michael was working, so the kids and I decided to spend the day at our good friends', the Sharpes, house.  We were all so anxious/nervous/excited the entire day!  Even though we had given some ideas, we really had no idea how the room as going to come together.

At last it was time for us to return home for the reveal!  We were greeted by camera crews and photographers (this story will be featured by a local broadcast station as well as a website...we'll share links to the stories when we receive them!).  Michael, the kids and I were all interviewed "before" and then again "after".  It was all very exciting.

Once the team had everything cleaned up, it was time for Ella (and us) to see her new room!  We slowly walked up the stairs (Michael carried Ella in her small manual wheelchair) and we reached the door.  We let Ella go first and she was speechless!  As soon as I walked in the room behind her the tears started to flow.  

The room was more beautiful that we ever could have imagined.  It was like a page out of a magazine!  It was absolutely stunning.  Ella got her new pink bed, a gorgeous tree mural on the wall and so many precious details that tied the entire room together.  

There was an incredible storage system that went up the sides and over the top of the bed for Ella's medical equipment.  And there were so many other extra touches that will make life easier for us (including a flat screen TV on the wall for when Ella gets sick or recovers from surgery and has to stay in her room with her bi-pap on)!  And I can't forget the HUGE piles of gifts that were purchased for Ava, Henry and Ella to enjoy!

We really didn't know what to say.  How could we possibly express our gratitude for this amazing room for our daughter?!?  A room that she LOVES and a room that will make caring for her just a little bit easier.  

We are forever indebted to the Special Spaces team that made this room possible.  Thank you, Special Spaces!!!!

And now, for the before and after pictures!!

Before...

Ella's old room

The machines by her bed

Her changing table

Entrance and closet

And after...

Ella's new room

Changing table with so many special touches

The beautiful tree

A wonderful chair for sitting and snuggling

Ella's medical equipment behind the doors (as well as other cute touches)

Ella sleeping with her machines

A great organizer to hold her braces while she is being dressed/undressed

Special Spaces Room Makeover! (by Lindsay)

Yesterda