Thursday, December 25, 2014
Monday, December 22, 2014
A Kiss on the Cheek...(by Michael)
As our kids develop so do their needs, their interests, and their curiosities. One positive aspect of SMA is that it does not hinder its victims mentally. They are allowed to grow and mature alongside their peers and siblings, without missing a beat.
With this mental development come many aspects of the human experience. Self-awareness and exploration being two of them. Ella is becoming no stranger to these facets of life and she acts upon her new-found "mentality" full force.
Lindsay and I are still carrying Ella. We carry her to the bathroom, we carry her upstairs, we carry her from the bath to the changing table, we carry her to bed. We carry her downstairs to the basement for play, and carry her every time she needs to move and her wheelchair won't suffice. While she is in our arms she often times takes the opportunity to give us a kiss on the cheek...sometimes several. Most of the time words are absent from the kiss yet occasionally she'll tell us that she loves us.
Her self-awareness that she is dependent on us for many things is growing and maturing. She talks to us about the best way to hold her as we stand her up in the bathroom getting her ready for her business or just thereafter. We try different ways and she knows that mommy and daddy do it in slightly different ways...she's ok with that. She is increasingly aware of her condition; often times speaking of how she can't wait for the doctors to "take the SMA away". She expresses her anger and frustration about having the disease and will ask us why it has to be her. Conversations ensue, often tears mingle themselves in, and invariable hugs close the conversation as we get back to the business of life.
Her self-awareness is coupled with exploration in that she knows many of her limitations yet she is willing to thwart them in the name of conquering SMA. She has a pride unmatched when she does something that she previously could not do or had lost along the way. She allows herself to fail over and over until she finds the strength, agility, and process by which she can accomplish her goal. When she is faced with a "brick wall" she simply asks for help, without shame, without reservation, without feeling indebted. She knows we are here to care for her.
It's hard for us to imagine life without SMA...it has permeated our very existence and resides in our daily & nightly lives. It's draining, to say the least, on physical, mental, spiritual and financial realms. It takes so much more than it gives. Getting that heartfelt kiss on the cheek throughout the day helps ease the pain of SMA and provides a reminder of what it is we are to do.
There may be a day when they find a treatment or even a cure for this disease. The entire SMA Community is sitting on edge as human clinical trials are currently underway. Until that time though, we go through each day as it comes. We do what we must in order to keep our child alive and well.
Thursday, December 4, 2014
Distractions...(by Michael)
She followed us all day long. She never really let us out of her sight as she whined about
this and whimpered about that. We made sure a good amount of nutrition was given to her
and that she was hydrated. We went about our daily routines hoping that she would find her
way back to “normal” soon. We went for a walk thinking maybe some fresh air and
movement would do her some good...to no avail.
Evening came, and soon after, dinner was coming to a close. She still acted strangely as the plates were being cleared, the glasses being rinsed, and the food put away.
“Maybe she needs a hug?” inquired Ava.
I squatted down to meet her at eye level and said, “C’mere Sasa”.
She ducked her tail under and nuzzled her face into my body. Lindsay, Ava, and I gave her hugs for a long time. She went from one to the other several times over the course of 15 minutes. Upon completion of the “hugging” session she was just fine.
I find it amazing how Ava so naturally knew that Sasa needed some hugs. Often times we overlook our pets’ basic needs in the name of raising our family...yet they are part of our family just as much as any other member. And while they do need food, shelter, and exercise, they also need love and the reassurance of the human touch.
We’re usually pretty good about paying attention to Sasa. Now that the kids are in the early years of school they are learning to appreciate all Sasa has to offer. They love her dearly and vice-versa.
I suppose on those days when the demands of our life distract us from Sasa she really does feel it...and it took Ava’s innocence to bring that to light.
Evening came, and soon after, dinner was coming to a close. She still acted strangely as the plates were being cleared, the glasses being rinsed, and the food put away.
“Maybe she needs a hug?” inquired Ava.
I squatted down to meet her at eye level and said, “C’mere Sasa”.
She ducked her tail under and nuzzled her face into my body. Lindsay, Ava, and I gave her hugs for a long time. She went from one to the other several times over the course of 15 minutes. Upon completion of the “hugging” session she was just fine.
I find it amazing how Ava so naturally knew that Sasa needed some hugs. Often times we overlook our pets’ basic needs in the name of raising our family...yet they are part of our family just as much as any other member. And while they do need food, shelter, and exercise, they also need love and the reassurance of the human touch.
We’re usually pretty good about paying attention to Sasa. Now that the kids are in the early years of school they are learning to appreciate all Sasa has to offer. They love her dearly and vice-versa.
I suppose on those days when the demands of our life distract us from Sasa she really does feel it...and it took Ava’s innocence to bring that to light.
Thursday, November 6, 2014
Fill my Past...(by Michael)
I sat down next to Ella. She was on the couch, wedged in the corner for support, unable to really move from the spot. We talked a bit, my iPad on my lap. We played a game together (Angry Birds). My mail program "dinged" and I received a message from www.curesma.org. The article was about the current clinical trials that are moving forward these days. In a nutshell they have made wonderful progress with the intravenous injections of the gene therapy approach! They are looking forward enthusiastically to the CFS (cerebral-spinal-fluid) injection approach...which has great potential.
This isn't really new news in our house. The SMA Community looks eagerly to the folks heading up this research, our fingers crossed, prayer lifted, and hopes ignited.
This hope...ignited by this research...is what keeps us going day in and day out. We look to the promise of a horizon void of SMA; a sunrise of the day when this disease no longer robs our child of movement, function, and health. We look to the prospect that she will know what it feels like to walk, unassisted. We look to the time, that often seems elusive, when we can look at SMA as a memory.
Along with this hope comes despair. Ella has come to realize some of the consequences of having SMA. Namely that her life is so different from most people's. Her daily routine is so different. It's taking a toll on her. She's expressing her feelings, rightfully so and encouraged by us. She is sad, curious, and angry...sometimes all at the same time. Moments unannounced capture our attention as she speaks her mind willfully about how she hates SMA. Questions of "why" circling our conversations as of late...answers elude.
Not only does SMA consume her motor neurons, methodically, intentionally, and without ceasing; it also consumes every aspect of our lives. Each decision we make has been weighted one way or another by SMA. Feelings get tied within its grasp, emotions get smothered in its clutches, peace of mind is obliterated by its insidious presence. The void that was left after her diagnosis seemingly grows, enveloping my life perspective...taking me farther away from what seems "normal"; thrusting upon me a repetitive ache that resides deep within...unnamed, unseen, yet felt full force.
This juncture, of hope for a cure right at our fingertips and the daily maniacal routines that SMA demands, weighs heavily. A juncture of unending promise not yet realized; of conversations not meant to be had with children, of watching a child--meek and fragile--fight the ravages of a relentless disease. This juncture, I know, will be passed and fill my past. Until then I can only hope, pray, and speak the truth to my kids about Spinal Muscular Atrophy.
This isn't really new news in our house. The SMA Community looks eagerly to the folks heading up this research, our fingers crossed, prayer lifted, and hopes ignited.
This hope...ignited by this research...is what keeps us going day in and day out. We look to the promise of a horizon void of SMA; a sunrise of the day when this disease no longer robs our child of movement, function, and health. We look to the prospect that she will know what it feels like to walk, unassisted. We look to the time, that often seems elusive, when we can look at SMA as a memory.
Along with this hope comes despair. Ella has come to realize some of the consequences of having SMA. Namely that her life is so different from most people's. Her daily routine is so different. It's taking a toll on her. She's expressing her feelings, rightfully so and encouraged by us. She is sad, curious, and angry...sometimes all at the same time. Moments unannounced capture our attention as she speaks her mind willfully about how she hates SMA. Questions of "why" circling our conversations as of late...answers elude.
Not only does SMA consume her motor neurons, methodically, intentionally, and without ceasing; it also consumes every aspect of our lives. Each decision we make has been weighted one way or another by SMA. Feelings get tied within its grasp, emotions get smothered in its clutches, peace of mind is obliterated by its insidious presence. The void that was left after her diagnosis seemingly grows, enveloping my life perspective...taking me farther away from what seems "normal"; thrusting upon me a repetitive ache that resides deep within...unnamed, unseen, yet felt full force.
This juncture, of hope for a cure right at our fingertips and the daily maniacal routines that SMA demands, weighs heavily. A juncture of unending promise not yet realized; of conversations not meant to be had with children, of watching a child--meek and fragile--fight the ravages of a relentless disease. This juncture, I know, will be passed and fill my past. Until then I can only hope, pray, and speak the truth to my kids about Spinal Muscular Atrophy.
Monday, October 27, 2014
Transformation...(by Michael)
There are so many things I do every day that I had simply taken for granted. When I wake up in the morning I swing my legs and feet to the floor and stand up. When I leave the house and forget something, I quickly run back inside, retrieve the forgotten item, and go on my way. If I need something from a cupboard or shelf, I simply reach for the object, grasp it, and bring it toward myself. The list of what I took for granted can go on and on.
Ever since Ella's diagnosis of SMA I have had the rare opportunity to help someone who cannot take the "everyday things" for granted. In fact, many of those things elude her. We find a way though. Through perseverance, creativity, and the selfless acts of others, we bring the world to her. In that bringing comes the experience of providing for another the things most of us take for granted. In that bringing comes the sharing of skills and talents. In that bringing we have found that there are people out there willing to lend a hand as they can. In that bringing we take less for granted.
Being in a wheelchair with a degenerative neuromuscular disease carries with it many challenges. Navigating the world can be complex as the world is primarily set up for walking folk. Bumps, cracks, uneven ground, tight spaces, corners, doorways, steps, mud, rain, snow and ice to name a few obstacles.
Many have stepped forward over the past few months to help Ella navigate her world with more ease and safety. Her independence has grown as a result. Through the initial efforts of one organization, spiraling to local businesses and companies, a transformation has occurred.
A transformation of the physical space around our house. A transformation that we, as Ella's parents, could not have accomplished in any easy way on our own. A transformation that allows her freedom of mobility, safe access to the outside, and a terrain that is navigable.
A special thank you to:
The Samaritan Network
The Hammerheads
Baumgartner Construction and affiliates
Beary Landscaping
Ever since Ella's diagnosis of SMA I have had the rare opportunity to help someone who cannot take the "everyday things" for granted. In fact, many of those things elude her. We find a way though. Through perseverance, creativity, and the selfless acts of others, we bring the world to her. In that bringing comes the experience of providing for another the things most of us take for granted. In that bringing comes the sharing of skills and talents. In that bringing we have found that there are people out there willing to lend a hand as they can. In that bringing we take less for granted.
Being in a wheelchair with a degenerative neuromuscular disease carries with it many challenges. Navigating the world can be complex as the world is primarily set up for walking folk. Bumps, cracks, uneven ground, tight spaces, corners, doorways, steps, mud, rain, snow and ice to name a few obstacles.
Many have stepped forward over the past few months to help Ella navigate her world with more ease and safety. Her independence has grown as a result. Through the initial efforts of one organization, spiraling to local businesses and companies, a transformation has occurred.
A transformation of the physical space around our house. A transformation that we, as Ella's parents, could not have accomplished in any easy way on our own. A transformation that allows her freedom of mobility, safe access to the outside, and a terrain that is navigable.
A special thank you to:
The Samaritan Network
The Hammerheads
Baumgartner Construction and affiliates
Beary Landscaping
Please enjoy the video showcasing their incredible work...completed with love, care, and pride...
Sunday, October 5, 2014
Thursday, October 2, 2014
"When Did All This Happen?"...by Michael
People often say that Spring and Fall skip by too quickly. They say it feels like those two seasons are getting shorter.
Maybe it is about actually taking time to notice the subtle changes that occur during these two seasons. One seems to produce life while another slips away with it. Spring offers sights and smells that wake the dulled winter senses and Fall creeps away beautifully with the greens of summer.
On our wedding day Lindsay and I made it a point to actually take in the moments, recognize them, and place them in a special place that day. It was told to us that the day "will whiz by" and "it will all seem so surreal". We took that information and made every attempt to make the day last. In doing so we still have incredible memories...it doesn't feel as though it whizzed by because there are so many moments we carved into our hearts that day.
As Ella grows it once again seems as though things are moving so fast. She is surprising us in so many ways and on so many levels. Her strength, despite having a progressive, degenerative neuromuscular disease, has actually improved. She raises her arms higher than before and for longer periods of time. She stands on her own two feet for a few seconds. She takes steps with little assistance from us. She lifts her hips off the ground and repeats the actions several times. She flicks switches, holds plates and cups, puts lids on toy boxes, and fights with us in the name of fun as we dress her !
"When did all this happen?" I ask myself.
Lindsay and I are both fairly logical people (although our emotions sometimes take over!) and when looking at changes in Ella's life we can certainly point to one change...liquid Albuterol. We have been giving her liquid Albuterol three times a day for the past two months. Lo and behold, changes really started happening...positive changes. It's amazing to watch.
It's amazing to watch. Like the seasons changing, like the wedding day flying by, we must take the time to watch as she grows; watch as she changes; watch as she fights this awful disease.
My eyes gaze forward to when the medical community will announce that they do indeed have a viable treatment and/or cure for SMA. If my hearts skips a beat over what we've seen over the past months I can only imagine what an incredible feeling will fill my soul when Ella breaks away from SMA.
Tuesday, September 9, 2014
"God made me with SMA..." (by Michael)
"Why do you have the wheelchair?" she asked a matter-of-factly.
"I have the SMA and I can't walk by myself." replied Ella in the same tone.
"The what?" was the inquiry.
"The SMA," said Ella, "God made me with SMA and I can't walk by myself."
Her eyes fixated on the chair, glanced purposefully to Ella's legs, then met Ella's eyes. "Oh," was her response. The two girls sat in silence for a moment or two.
"I like Doc McStuffins." said the girl.
"Me too." replied Ella.
"I like your wheelchair. How does it work?" the girl inquisitively asked.
Ella made a friend. They sat and played school on the pavement. Went to the playground and enjoyed each other's company. They learned about each other...just a little bit, but enough to keep their interest in one another alive.
They played tag. A game that can be difficult for a person in a wheelchair who has limited mobility of the arms. But they made it work.
Two four-year olds made a game of tag work with one of them being in a wheelchair and having SMA. At first, Ella was "the runner" and her new-found friend was "it". Ella was caught and she was the "it". The game began on the grass but after awhile Ella requested that it continue on the sidewalk only. That way she could gather speed without having to bounce herself around as she does on the grass.
Her new friend obliged.
They laughed. They "ran". They played tag.
Upon leaving Ella turned to the girl and said, "Do you want to be my friend?"
The girl had a sincere smile in her eyes and without missing a beat said, "Yes, of course."
A friendship this is formed at 4 years old has the potential to last a lifetime.
Sunday, August 17, 2014
Recovery (by Lindsay)
After 9 days of intense therapy in treatment, I am now home from Linden Oaks.
It was a rough 9 days. I hated being away from Michael and the kids. But I knew that it needed to be done.
I learned a lot. I became more in touch with my feelings.
And most importantly, I broke the unhealthy eating cycle by retraining my body to eat healthy portions.
While the eating disorder is now under my control, I still have to work on staying in control.
So now I move forward towards recovery.
Through all of this I felt your love through prayers and kind words.
And we want to thank our family and friends who helped Michael this past week! We are so blessed to be surrounded by such incredible support. You are all amazing!
We are now approaching the start of the school year for Michael and the kids, which means we'll be getting into more of a routine that I am definitely looking forward to. Fall into early winter is my favorite time of year and I'm looking forward to starting the season with a healthy mindset!
It was a rough 9 days. I hated being away from Michael and the kids. But I knew that it needed to be done.
I learned a lot. I became more in touch with my feelings.
And most importantly, I broke the unhealthy eating cycle by retraining my body to eat healthy portions.
While the eating disorder is now under my control, I still have to work on staying in control.
So now I move forward towards recovery.
Through all of this I felt your love through prayers and kind words.
And we want to thank our family and friends who helped Michael this past week! We are so blessed to be surrounded by such incredible support. You are all amazing!
We are now approaching the start of the school year for Michael and the kids, which means we'll be getting into more of a routine that I am definitely looking forward to. Fall into early winter is my favorite time of year and I'm looking forward to starting the season with a healthy mindset!
Friday, August 8, 2014
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.
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.
Tuesday, July 29, 2014
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!!
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!!
Wednesday, July 23, 2014
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 :(
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!
Monday, July 21, 2014
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.
Thursday, July 17, 2014
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.
Friday, June 27, 2014
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.
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.
Tuesday, June 10, 2014
Monday, June 9, 2014
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".
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".
Wednesday, June 4, 2014
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...
And after...
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 |
Wednesday, May 28, 2014
Things to Consider...(by Michael)
It seems like an eternity since I've sat in front of my computer to write a blog. The days whiz by like lightning and the nights quickly slip away. It seems as though the complexities of life get more entangled, the business of keeping our heads above water more ominous, and the joys in seeing our children flourish with new-found adventures flood our senses.
As we begin settling ourselves into a routine we also find ourselves picking up thoughts, conversations, anticipations, and the uncertainty of the unknown right where we left them just prior to the move.
The other day, as Ava and Henry were outside playing, Ella wanted to take a respite with Sasa on the couch. She found her familiar spot by Sasa's head--and Lindsay and I sat with her in the family room. Our conversation began with something about the house; some project among a million that needed our attention. It quickly turned to Ella's hips.
We had our consultation with her neurology team at Children's Hospital; we gathered their opinions, expertise, and insights. We are still waiting for Ella's pulmonary specialist to weigh in...an all-too-important factor to consider when contemplating surgery for a child with SMA. Nonetheless we still have to grapple with the decision on what to do...or better stated, when to do it.
She will need the hip surgery...that's a given. SMA weakens the muscles, atrophies them, leaving them useless in many cases. The muscles that are designed to hold our hips in their proper place are no exception. With weakened, atrophied hip muscles the hip bones (the head of the femur) begin to "slip out" of the joint. Corrective surgery calls for cutting each "head" in half, realigning them, and screwing metal plates in place for support. That process alone sends shivers down my spine for a variety of reasons.
Things to consider include Ella going under anesthesia. A risky endeavor for a child with SMA. Being intubated can lead to an increase in dependence of the bi-pap. There is no valid, reliable research on kids with SMA that the surgery has a positive or negative prognosis; although kids with CP (Cerebral Palsy) have been followed and the reports are generally good.
Ella is fairly strong right now, considering her disease and the nature of it...the doctors did mention that having the surgery earlier than later might be a good idea...a chance to capitalize on her "strength".
Our conversation endured for a good 20-30 minutes...all the while Ella sat with Sasa, singing, petting, and showering love on our beloved dog. She was clueless to the depth and breadth of our conversation; she was happy, content, and enjoying her new home and all that it offers. I kept watching her as we spoke about the surgery and wished...deep down in the pit of my soul, that I could do something to take the SMA away...just take it away from her.
Our decision as to when to do the surgery will have to come soon. We will make that decision and move forward...doing what we can, what we must, and what we are called to do for our youngest.
As we begin settling ourselves into a routine we also find ourselves picking up thoughts, conversations, anticipations, and the uncertainty of the unknown right where we left them just prior to the move.
The other day, as Ava and Henry were outside playing, Ella wanted to take a respite with Sasa on the couch. She found her familiar spot by Sasa's head--and Lindsay and I sat with her in the family room. Our conversation began with something about the house; some project among a million that needed our attention. It quickly turned to Ella's hips.
We had our consultation with her neurology team at Children's Hospital; we gathered their opinions, expertise, and insights. We are still waiting for Ella's pulmonary specialist to weigh in...an all-too-important factor to consider when contemplating surgery for a child with SMA. Nonetheless we still have to grapple with the decision on what to do...or better stated, when to do it.
She will need the hip surgery...that's a given. SMA weakens the muscles, atrophies them, leaving them useless in many cases. The muscles that are designed to hold our hips in their proper place are no exception. With weakened, atrophied hip muscles the hip bones (the head of the femur) begin to "slip out" of the joint. Corrective surgery calls for cutting each "head" in half, realigning them, and screwing metal plates in place for support. That process alone sends shivers down my spine for a variety of reasons.
Things to consider include Ella going under anesthesia. A risky endeavor for a child with SMA. Being intubated can lead to an increase in dependence of the bi-pap. There is no valid, reliable research on kids with SMA that the surgery has a positive or negative prognosis; although kids with CP (Cerebral Palsy) have been followed and the reports are generally good.
Ella is fairly strong right now, considering her disease and the nature of it...the doctors did mention that having the surgery earlier than later might be a good idea...a chance to capitalize on her "strength".
Our conversation endured for a good 20-30 minutes...all the while Ella sat with Sasa, singing, petting, and showering love on our beloved dog. She was clueless to the depth and breadth of our conversation; she was happy, content, and enjoying her new home and all that it offers. I kept watching her as we spoke about the surgery and wished...deep down in the pit of my soul, that I could do something to take the SMA away...just take it away from her.
Our decision as to when to do the surgery will have to come soon. We will make that decision and move forward...doing what we can, what we must, and what we are called to do for our youngest.
Tuesday, May 13, 2014
Little Did We Know (by Michael & Lindsay)
It requires some work.
It needs some elbow-grease.
It calls for some love.
We have all three to shower upon it.
Our new home. A well-built, 4-bedroom house surrounded by a large yard, neighboring people who are simply fantastic.
When we stepped into this house two months ago a feeling of comfort, of security, and "knowing" filled us. It was as if the house tapped us on the shoulder and motioned us toward it. Many people commented that we seemed so "calm" during the process of buying the house...and we probably appeared that way. Truth be known, we had a sense of calm about us simply because of what the house meant to us; because of what it promised.
Little did we know that the promise it boasted came with so much more...namely a neighborhood that we've dreamed of and a place that holds such potential for Ella's independence.
Our children can, for the first time in their lives, exit the back door and play with kids from the neighborhood...no playdates need to be coordinated, no texting, no plans for a simple afternoon of play. It resonates of the days of our youth...a simpler time.
Our new home is the product of a combined effort by family, friends, and strangers. An effort to provide Ella with the independence that has been robbed of her by SMA. We move forward, building ramps, finding outside play equipment, conferring with agencies, researching adaptive devices, and planning for the future.
We have our hopes. We have our dreams. More importantly though, we have each other. And together we will work, provide elbow-grease, shower love and create memories in our new home.
Enjoy some pictures...
 |
| Ella in our family room |
 |
| Ella's bedroom |
 |
| The kids' bathroom |
 |
| A large backyard to play in |
 |
| Three very happy children :) |
Wednesday, April 23, 2014
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.
Sunday, April 13, 2014
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.
Subscribe to:
Posts (Atom)