I've Noticed...(by Michael)

Two-and-a-half months ago Ella was diagnosed with Spinal Muscular Atrophy Type 2.


So much has happened since that day.


Lindsay and I have entered into the world of caring for a child with special needs; something we never thought would be part of our lives. We have been thrust into an emotional hurricane, spinning us around with a force that leaves us hopeful one moment and in despair the next. The physical toll that surrounds our days continues to drain us as we seemingly need more rest despite how much we think we are getting. The financial burdens that loom in the distance produces a stress that lies underneath the surface...ever-present. Spiritually we are being called to open ourselves up more to God as we seek refuge in His care.


I've noticed much in the past two-and-a-half months--more so in the past week...


Ella has regressed physically yet has progressed mentally. She fights her SMA by being smarter than it is. She finds ways to do what she wants and if she cannot--she finds ways to get the help she needs.


I've noticed she looks at other kids her age running around and her eyes speak saying, "Why?". She settles into whatever she is engaged in and is happy for it.


I've noticed that Lindsay and I are in the beginnings of accepting the diagnosis yet still remain in the throws of disbelief, for the enormity and implications associated with it are too painful. Too close to home.


I've noticed Ava and Henry seeking attention as they grow and yet they continue to give loving attention to their sister.


As of late, I've noticed that Lindsay and I are more willing and able to ask for the help we need and are going to need. We've begun to take a more realistic view, despite the pain it brings, at how our family's life will be. We have made the decision to look at the big picture while at the same time looking at what we need in the present. Ella will grow. She'll grow and at the same time she'll lose more motor neurons, resulting in the loss of movement. We will have to move for her, with her. Technology and equipment, home modifications and specialized care, will be the tools we turn to in order to provide her with the best physical world we can. We know we cannot do it alone.


I've noticed most of all the call from God to us. For whatever reason, He thought it best that Ella was to come to us in this world. He has given me and Lindsay charge of a precious soul seeking to experience life on this earth in a different way than most. He has brought to both of us experiences and life-lessons designed to equip us to raise our three children in a fashion that will keep them loved and safe; providing them with the best emotional care we can.


I notice this call from God and at the moment I am still listening. I am still trying to open my mind and heart at the same time, although often they are at odds with each other. I am trying to quell the awful thoughts that surround me about SMA and what it does--and instead--listen to my soul, my heart, and the love that God has given to me so that I can do what I am supposed to do. Like a long-distance phone call over a wire that is static-filled I am trying to make out the message. Each day, the static lessens; I stand there--pulling into my life all that God is offering and somehow, some way, Lindsay and I will do what our Creator has given us the charge to do.


I've noticed...

Happy Days (by Lindsay)

Finally, I can write about some happy days that we've had...

Lately, the downs have far outweighed the ups, so it's been hard to get away from the dark place. But the past few days have been very positive for Ella, for Ava & Henry, and for Michael and me.

Let me begin by showing you a picture of what our family room looked like a few days ago...

Pretty nice (although it RARELY looks this clean, ha ha). However, with Ella getting her new Micro wheelchair (it came this past Tuesday!), she does not have the strength required to maneuver it on the carpet (which also covered the living room and dining room on the first floor).

We knew we had to make a change to somehow accomodate this new (yet tiny) piece of equipment. After all, what good is a wheelchair that Ella can't use in most of our house?

We have been very hesitant to do any kind of home modifications to our house, not knowing what our future house situation will be. Any true "handicap accessible" modifications will make it much more difficult for us to sell the house, and at this point, we're not sure if this house will work for Ella in the future.

However, we knew that changing the flooring would not only benefit Ella now, but it would also be a nice feature, should we happen to try to sell it down the road.

So early Tuesday morning, all three kids went off to Gramma and Grandpa's house for two days... a very special two days for them :)

And that's right, Michael and I had TWO DAYS with no children in the house. Something that has not happened in years! We love our children more than anything, but having a couple days to catch up on so many things around the house (I finally cleaned!!) and having a nice relaxing date night was so wonderful :)

So shortly after the kids left Tuesday morning, the flooring crew came and the demolition began...

Our house definitely looked like a war zone for a little while, but it was well worth it! We now have wood laminate floors covering our entire first floor except for our kitchen and laundry room (which are both ceramic tile).

Ella can finally get around!

Here are a couple "after" pictures...

And of course, I have to share a video of Ella in her new chair, exploring our family room on her own :)

Upsee-daisy...

Sometimes I wish I could stop time.


I know there is going to be a moment when I realize that I can no longer pick up my Ella the way a father does...I know I will never be able to play upsee-daisy with her.  I won't be able to wrestle with her, tickle her until she screams out in laughter, or put her up on my shoulders as we walk through a long day at the zoo.


The reality of what's happening is drilling its way deeper into my life. 


I sit at this computer, wondering how I am supposed to rummage through my thoughts and feelings.  I look at the world in a whole different way.  I look at myself in a whole different way.  I look at life in a whole different way.


Ella can waltz her way into anybody's heart.  She has a beautiful smile that lights up her face and melts those around her.  She seeks out people in a crowd and makes eye contact, whisking them into her world of delights.  She easily accepts all and trusts those who care for her.  


Ella has an adoration for animals.  There is a quiet love that exists between her and the animal kingdom.  She used to roll across the floor just to get to our dog, Sasa.  Later, she would pull herself to her.  Now, she uses her words to tells us she wants Sasa, as she can no longer move herself to the objects of her affections.  


It's amazing to watch her smile when you are able to hold her just right and swing her up and around, letting her "fly" through the air.  


She giggles with delight when together we find that perfect balance allowing her body to be upside down if only for a brief moment. 


I'm happy that she can, at least for a while, experience some of the simpler joys of childhood.


Sometimes I cradle her neck with one hand, get my other hand under her trunk, and gently bounce her on the bed on her back.  She loves it.  


I'm a fortunate man, I am.  I have three beautiful children, a wife who loves me more than anyone ever has, and a chance to be a father to someone whom I know, with every fiber of my being, is going to be an inspiration to so many people as she travels through her life.   


Sometimes I wish I could stop time...and not for my sake.

Dark Place (by Lindsay)

I've been wanting to write a blog post for the past few days, but honestly, I haven't had the strength. I've started writing a couple times and then had to stop. Usually writing out my thoughts helps me feel better, but I think I was in such a dark place that it didn't matter.

A dark place.

I visit there quite often these days. Each time is a little darker than the last. I keep thinking, "Why isn't this getting easier? It's supposed to get easier as time goes on!"

But I guess it doesn't work that way with SMA (or any other progressive disease for that matter).

Right after Ella was diagnosed, I knew it would take some time to get used to the idea that she has this disease. What I didn't know (or realize at the time) is that we'd be watching her get worse. Day after day. Week after week. Month after month.

It's been over two months since Ella was diagnosed. The decrease in her abilities since then is incomprehensible.

She saw her dietician yesterday and Ella has lost weight in the past month. Not much, but enough to prove that she sure isn't gaining weight.

At aqua therapy today, her PT told us that she's noticing that Ella's fingers are becoming hyperextended. I asked what the implications were, as I had no idea, and she told me it means that Ella's hands are getting weak.

I just don't know how much more of this I can take. We thought we had time. Time for the researches to find a cure. But now I'm not so sure. We have no idea what we will be dealing with because it changes so quickly.

Up until this past weekend, I've been able to prevent myself from becoming completely emotionally consumed with what's going on. I'd feel myself going to that dark place, and I'd take every ounce of strength I had to push through the day, knowing that if I didn't, if I let myself sink into that place, I might not be able to get out.

On Tuesday, I couldn't get out. I had been sinking since Saturday, and after a few days, I was unable force myself to keep going. I've never felt anything like it before in my life.

I wish I could cry. Crying is so much easier. Instead, I have this enormous lump in my throat and a dark cloud surrounding me, following me everywhere I go. Every so often, the clouds part and a little ray of sunshine comes in, but it's always short lived. And those rays of sunshine are becoming few and far between. No, I take that back, the rays of sunshine are always there, they're just having a harder time getting through the dark clouds.

I was talking to Michael about it and he insightfully told me that I've been pushing the reality of SMA away, any time it tried to get near. I would force myself to keep busy, which I thought was helping, when in reality, I was just avoiding my feelings. He told me that my feelings became too strong and I couldn't fight them any more. But I NEED to let the feelings in, even when they're bad. It's OKAY to feel sad. Trying to avoid those feelings is only going to make it harder the next time I start going to that dark place. Avoiding my true feelings will make it impossible to move forward.

And I think he's right. I hate it when he's right.

I don't know what I would do without Michael. I've never known anyone in my life to be so in-tune with his (and others') feelings. We've heard so many stories about how having a child with special needs (especially a terminal disease) can rip families apart. Michael and I have only gotten closer. He is my rock and there is no way I'd survive this without him.

This road has only just begun. It's going to continue to get worse. I can only hope and pray that someday it will start to get better. But until then, I have to stop fighting my feelings. I have to allow myself to experience them full-force if I ever want to be able to come to terms with this awful disease. And I have to stop hiding. I'm always afraid to put myself out there, making myself vulnerable. Letting others see me weak.

But as awkward as it is, and as much as I hate being such a downer (and want people to think that I'm doing great), putting it out there really helps.

Dull & Achy...

The mind is a vast, uncharted, collection of emotions and thoughts,  that often leads us in directions and down life paths that we never knew existed.


The mind allows the circumstances that surround you to fill up your days and nights with an all-consuming demand for attention.


The mind allows us to gather our courage sometimes forsaking our own well-being in the name of love.


The mind makes attempts to guide us despite what our hearts may beckon. This results in a dichotomous relationship that requires energy unfounded to overcome.


The mind is ours to live with, moment by moment, for our time on this earth.


Lindsay and I have found that our minds are currently producing a dull, numbing experience.  It is more than lack of motivation.  The ache that resides deep within our brains makes for a world that is surreal.  It keeps us hostage much of the days and nights, ever increasing its need, its demand, its necessity for our attention yet reciprocates with a dull ache.


Maybe we are drained; emotionally, physically.  Maybe we are on the path to acceptance, or possibly entering the realm of depression. 

In general, and not in this particular order, the stages of grieving are denial, anger, bargaining, depression, acceptance. The five stages often inter-mingle with each other, providing confusion to those experiencing them.   The human psyche can, from one single event, experience these "stages" in a multitude of ways...in any order, often in repetition.  Many times, the cycles are vicious...hence the reason why so many people struggle with events in their lives for such long periods of time...often times without even knowing they are suffering. This produces ill effects on their physical, mental, and spiritual lives.


This numbness.  It is insidious in its nature; creeping around the core of our lives, making the motivation to do the everyday things dwindle.  The day-to-day, mundane parts of life seem pointless when the numbness extricates itself from deep within~~finding its way into our consciousness.  It strips us of energy, resources, and carries us to a distant place that remains unspoken about most of the time; and ever-increasingly dark.  


If not for the people in our lives...each other, our children, our family, friends and co-workers, acquaintances and yes, even strangers...if not for them our collective worlds right now would be a much different experience. For those who surround us~~we are so very grateful.  


We wax and wane through the stages this psychological wrestling amidst the diagnosis of SMA given to our Ella.  We seek to find the  psychological awareness we once had...an awareness that everything will be all right.  Maybe, somehow, in the big picture that includes God, we know everything will be fine...it does however, tax us and weary us.  

Dull and achy...my mind goes on.

A Mother's Love...

Lindsay Ruth Casten~~


When Lindsay was pregnant with Ava we were quite naive about birthing a child.  Our doctors feared that Ava would be too big for Lindsay to deliver.  They told us if we attempted a natural birth we would risk shoulder distocia (baby's shoulders get stuck and they have to break them to get it out).  Of course we feared for our unborn baby and went with the recommendation of a C-section...not knowing the implications for future pregnancies. 


Ava was 7lbs. 3 oz.  She would have fit just fine.


We worked through the anger and frustration and then we were pregnant with Henry.  We went into the pregnancy with all the intention of having a VBAC (Vaginal Birth After a C-section).  Everything was going well.  In the last few weeks of the pregnancy, Lindsay's blood pressure began rising.  It continued to rise until just a day or two before his due date when it was extremely high.  The doctor ordered that the baby be delivered immediately...we knew this was the right decision as high blood pressure can be very dangerous.  Henry was our 2nd C-section.


Then Ella was conceived.


We figured she would be a C-section as well since our doctor told us that a natural birth after two C-sections was not common practice.  We accepted that and went on merrily with the pregnancy.


At about the 6 month mark with Lindsay and the baby's best interest at heart, after much research and talking it over with our doctor, we decided to go forward with the VBAC2 (Vaginal Birth After 2 C-sections).  


Our doctor supported us, we hired a doula, and took a Bradley Birthing Class.  We were serious.


Ella Sabine Casten was born naturally; with no medication; after an 15 hour labor.  


Each child brought to us an experience that we hadn't bargained for...such is the way of life.


Ava brought to us the joy of  being our first child...quite the delight she is as our first.  She taught us much about parenting and continues to do so.


Henry brought to us the delight of the unexpected.  We thought for sure he would enter the world one way and he did it another...we know that Henry will always do things just slightly different from others.


Ella brought to us the blissful experience of birthing a child the way nature had set it up...she brought to Lindsay (and myself) the experience of natural childbirth.


All three kids.  Loved, adored, cared for by their mother & father.


Their mother.


Sometimes I watch Lindsay interact with them.  She's a natural.  She has a way with kids that few and far between can match.  


I know the depth of her anguish over our youngest's terminal illness.  We live it together everyday.


The bond, however, that a mother shares with her children is different that the one shared by a father.  It may be something I do not fully understand or even comprehend, but it's there...I can feel it.  The love of a mother goes unmatched...


Our marriage vows were proclaimed before many: "...to have and to hold, for better and for worse..." 


Today, we talked about "good and bad" in church with a small group of people. We realized that whatever we label our situations, however we choose to assign words and meaning to them, the purpose of our having these three kids is clear...to love them through all that life brings to them.


I can see no other woman who does this better than my beautiful wife, Lindsay Casten.

Exhausted...

She works hard.


She gives it her all.


She's quite the girl.


We're tired.  


Sleep continues to elude us.  We put our kids to bed and go downstairs.  We talk, pay bills, answer e-mails, and work on Mama Bracelets.  You would think when we finish those things we would march ourselves up to bed.  We don't.  We stay up.


Sleep isn't what it used to be.  Waking up at 3:00 am every night with your mind twirling thoughts around, as if each one were trying to grab a hold of you so it could be the one to scream its needs to you, awaits us.  


Sometimes when I wake up, I find my way down to the family room, where just hours earlier the kids were playing.  Toys are away, the furniture has been put back together and silence rules the room.  There is an echo; a sort of buzzing that I can discern.  My head grows quiet and I sit there.  My body is still as I begin to lose awareness of it...I get lost in a world filled with thoughts of my life.  Where I have been, who I have known, what I have done.  I play scenes from my childhood, adolescence, and adulthood.  For brief moments it seems as though it all makes sense yet I cannot put my finger on it long enough to hold it...to capture it.  It eludes me as quickly as it had arrived and I am left with nothing.


I walk back to bed.  My mind is tired and I feel no emotion.  If I wanted to cry I couldn't.  If I wanted to smile, I couldn't.  If I wanted to furrow my brow in anger...I couldn't.  My body grows numb as I lay there.  I find a focal point using the moonlight that streams in through the high window.  My breathing slows and I greet slumber with an hour left until I must wake for the day.


As my day goes on, whether it is a workday or a weekend, I numbly participate in life.  My mind is not simply preoccupied with my family and the challenges we are facing, it is consumed.  I have found ways of breaking from this consumption for periods of time so that I can continue with my work, with my chores, with my decisions.  I know, however, that when I return from any task, SMA will be waiting.


I've never felt an exhaustion such as this.  


I can only wonder how Ella will handle her knowing she has SMA...for she will never be able to distract herself from it. 


We have some time before her awareness of SMA becomes her reality...our time is now to learn how to handle it so that we can give her what she needs when her time comes.



    

Goin' Mobile...

The one thing that amazes us is how children adapt so easily.


At one point in her life Ella moved herself the only way she could, by pulling herself with her two arms...dragging her feet behind her. She didn't make any great distances, but she moved...and was happy for it. As we realized something was not right with her development it became increasingly more difficult to watch her struggle with something that we simply took for granted in babies. Her mobility ever since has been a source of high frustration for Ella and anguish for us.


We thought, as many people did, that we could simply carry her more than we did with the other two. Maybe make up for her lack of mobility that way. We have come to realize that is not a realistic option.


SMA causes motor neurons to die. With this demise of the neuron, muscle weakening and atrophy occur not far behind. Children become increasingly "floppy" and cannot help caregivers as they hold and move them. Injuries become more of a concern as well. At the end of the day, mobility, or rather the lack of it, makes life increasingly difficult.


The mind of a 16-month old wants to explore, wants to be independent, wants to move, touch, taste, smell, and do everything nature intended the young to do. SMA threatens to take that away.


Her micro-wheelchair was something that opened up doors for her and us. It provides a way for Ella to get around the house, the deck, church, a friend's house, etc. Her stamina and endurance, however, can easily be taxed, and we know that taxing the muscles of a child with SMA can be dangerous. The micro-chair will most likely be purchased for her and it will be used, but it will not serve as her primary mode of mobility.

Enter the power wheelchair!

We took Ella to Marianjoy Rehabilitation Hospital today to be evaluated and fitted for a power wheelchair. Specifically the Permobil K450 (fancy, eh?)


The most encouraging feelings filled our life this day...she sat in our laps and almost couldn't contain herself when she saw the wheelchair; as if she knew exactly what it was and why she was there. We placed her in the seat and she quieted herself, her small trembling hands hovered over the armrests, her eyes widened yet remained fixated on the controls, her face took on a serious look; a look of determination to figure this thing out.


We got her outside by propelling the wheelchair ourselves as she sat in it. Once outside she realized what we wanted her to do. She fiddled with the controls, testing our reactions. She didn't move the 300+ lb piece of machinery yet...just played with buttons and observed our reactions.


I placed my hand over hers and guided it to the joystick. We moved. Her expression changed from one of "testing the waters" to "surprise that her body could move through space" as it did. We repeated this joystick lesson for a few minutes.


She tried it on her own. She wouldn't use the joystick but instead tried to push on the armrests as if they were wheels--like her micro-chair has. The Permobil stood still; her eyebrows furrowed. Her tiny hand found its way to the joystick and with the delicacy that Ella possesses, she moved it forward and the chair moved in response. She let go, hand trembling. She looked at us not with a smile but with a look that said, "Look what I just did and I think I like it." She pushed the joystick again and the smile ran across her face, leaving behind an atmosphere of triumph over the disease that threatens her movement.


We took her around the area we were in, surrounded by foliage of all sorts and all at different levels. This chair, designed for those who are in it to be able to access their environment, allowed her to touch the branches of a tree, hand the leaf she picked to her mother without Lindsay having to move, and then get herself low enough to pick the petals off of a flower and rub them in her hands, bringing them to her nose all by herself to inhale the sweet aroma mother nature so deliciously placed there.


She found her way to the delight experienced by spinning, as all children like to do--as all children need to do. She laughed and giggled and looked astonished at the world she could only see from a distance just prior to this day.


We went back into the clinic, had her measurements taken, and discussed the details of this chair as well as her current chair. We also discussed the other piece of equipment she will need...a stander. The details of the stander will undoubtedly be another blog post!


To say that this day at Marianjoy was a turning point would not do it justice. It falls under the category of being a day of new beginnings.


Ella, if she is able to get this Permobil K450, will be able to explore her world, keep up with her brother and sister, take pride in becoming independent, develop her own experiences, and accomplish what we have been praying for for so long--to be the fullest expression of who God intends her to be.

Standard Position

Elevated Position

Ground Position

Tilt Position

Accessing Her Environment

The MDA Clinic (at Shriner's Hospital for Children)

Ella watching herself in the mirror as we waited for the doctors at the MDA Clinic.

Dr. Silver wanted to see Ella four months early based on what we reported to him regarding the regression we have seen in Ella.

Dr. Silver runs the MDA Clinic at Shriner's Hospital in Chicago, just outside of Oak Park, Illinois.

This clinic is set up like none other we have ever seen or heard of. Patients are scheduled all at the same time, 1:00 pm, and each get their own room in the MDA Wing. After everyone is weighed, blood pressure is taken, and height is measured, the "rounds" begin.

Doctors, nurses, therapists, specialists, residents, students, and professionals rotate from room to room, popping in and out as necessary. Working together under the same umbrella of caring for each individual child in each room. They bounce ideas off one another, collaborate with each other, discuss, listen and include family opinions while problem-solving. They create an atmosphere of shared goals, shared functionality, and shared respect. We felt part of a team that had Ella as the center of attention...no one person was looking for credit...all were looking out for our daughter.

We walked away with so much information. We walked away with mixed emotions.

They helped us decide on the best type of equipment for Ella. They looked at her current functioning, introduced their expertise with SMA, and tried to anticipate her future functioning capabilities. We have a clear direction of where we are going. The "demo" micro-wheelchair she has now must be returned tomorrow (Tuesday) but we know this is one of the chairs we will get for Ella. We all agreed that a power wheelchair is in her immediate future as well...she will be evaluated for that on Tuesday with Marianjoy Rehabilitative Hospital. We also decided that a power stander would not be a practical option for her, although it was a consideration. We will be getting her a stationary stander so that she can bear weight on her legs.

We learned about techniques to help her with everyday functioning--such as better ways to help her feed herself, improved positioning for play, and ways to help her cough.

Her orthopedic surgeon, Dr. Smith, examined her and felt that we were doing a good job with her thus far. He let us know that her spine is developing a curvature due to her weakened muscles. While scoliosis is typical in kids with SMA, it's usually not a concern this early on. He did not feel that she needed any intervention at this point, but is using his findings as a baseline.

Dr. Silver entered the room toward the end of the 4 hour visit. We told him about our observations and feelings of concern. He examined her in his usual way; with the utmost care and impeccable bedside manner. He spoke with us with the frankness that we are appreciative of and told us that while Ella is a Type 2 SMA patient, he now considers her a "severe" Type 2 SMA patient. He further explained that this means she is part of the 20% of Type 2 patients who regress rather quickly early on. He expects her to plateau...until then he'd like to see her every three months as opposed to every six.

He instructed us to make an appointment with a pulmonologist now, rather than his initial recommendation of later (which was based on Ella's presentations just one month ago) so that we can make sure to keep her respiratory system as healthy as possible...this is critical to her survival.

We left feeling mixed emotions. On the one hand, we hated hearing about her spine curvature and more-so about her being a "severe" Type 2 SMA patient. On the other hand, we gained more confidence, more knowledge, and more insight into how we can best help her live her life than we have since we first had concerns 6 months ago.

Amidst the mixed emotions, one thing rings loud and clear...our gratefulness for the incredible group of people that we met today who will be Ella's Team; for the opportunity to be a part of that team; and for the knowledge and comfort that goes along with it.

Tomorrow we will write about the Marianjoy Rehabilitative Hospital and her power wheelchair evaluation....

Ella proudly sporting her new Cubs hat that she got from the MDA Clinic

A Much Bigger Reality...(by Michael)

A different level of reality hit me this week...more like, ran me over.


Lindsay and I will be taking Ella to see Dr. Silver and his team at his MDA Clinic at Shriner's Children's Hospital in Chicago on Monday (10.10.11).  This appointment was originally scheduled for February of 2012, but after some correspondance with Dr. Silver regarding Ella's regression, he wants to see her now.  A hit of reality right there.


On Tuesday (10.11.11) we will be visiting Marianjoy Rehabilitative Hospital in Wheaton along with National Seating & Mobility to have Ella evaluated for a power wheelchair and possibly a stander.  Wham...another blow.


On Saturday (yesterday), Lindsay and I sat with Mobility Works and discussed, in detail, the various options we have in terms of having a vehicle that will be able to transport Ella and the other two kids safely.  Wow--the technology they have nowadays~~


While these three events certainly contributed to the "different level of reality" I spoke of earlier, they are not entirely responsible for my feelings of that reality...


The human spirit has left me in awe this week...


Watching and helping Ella go through her day.  Witnessing the love and compassion that Ava and Henry show toward her.  Embracing the moments as I catch a glimpse of Lindsay holding any one her kids in her smiling gaze, and them returning the love in kind.  Talking with people who offer their insights, support, and love with each word they utter.  Seeing firsthand how God is orchestrating a beautifully interwoven blend of people gathering around a child.


I cried this week...not for the fact that Ella is struggling with SMA, not for the fact that this devastating disease has entered our lives, not for the fact that often times we don't know what we are going to do from one moment to the next...I cried this week because I felt the enormous reality of how much people truly care...I cried in the knowing that God has brought to me this little child, stricken with a disease that will require everything I have to see her through it, yet has not left me alone.


I may never be able to describe with mere words this reality that stands before me.  I can, however say that it is bigger than SMA.


Much bigger.

Fun at the Playground

Today we went to a playground.

Usually when we go to the playground, there's not much for Ella to do. She can swing in the baby swing. And that's about it. We'll put her on the ground for a little while, but she either gets bored or starts eating the wood chips, so she doesn't end up there for very long.

But today, we went to a playground that had the hard rubber surface, so we brought Ella's wheelchair. She had a blast! For the first time EVER, I had to pay attention to where Ella was! It was wonderful. And let me tell you, keeping track of three young, mobile kids at a busy playground was a lot of work! But I loved every second of it!

When we were ready to leave, we had a bit of a walk to get to the car and we had to go through some grass. Ella was getting a little tired and isn't strong enough to maneuver through grass, so I showed Ava and Henry how to help her by holding her hands. Priceless!

Aqua Therapy

Yesterday Ella started aqua therapy.

She'll go to her PT's house once a week, where she has a warm water therapy pool (nice!).

Ella really enjoyed being in the water. It's a great place for kids with SMA, because their muscles don't have to work nearly as hard against gravity.

Below are some pictures from her first aqua therapy session as well as a video at the end :)

Excuses...(by Lindsay)

Right now I'm angry.

I'm finding that the first half of each week is becoming really hard.

We used to be motivated by her therapies (on Tuesdays). Now we're just discouraged.

Ella has been doing PT and OT every week through Early Intervention (EI) for a couple of months now (PT is Tuesday mornings, OT is Tuesday afternoons - with lunch and nap in between). In the beginning, we were learning about great skills to work on with her and tools (such as orthotics and sensory toys) to help her achieve goals more efficiently.

But it seems that for the past month or so, similar phrases have been coming out of our mouths (both Michael's and mine as well as Ella's therapists)...

"Sometimes she can have bad days."

"Maybe she's tired today."

"I wonder if she's getting new teeth."

"Perhaps she's not feeling well."

"Maybe the new wheelchair is using up too much of her strength."

"I don't understand why she can't do that anymore..."

And the excuses we've come up with go on and on and on.

And that's what they are. Excuses. The fact is, she can't do the things she used to be able to do a month ago.

That's why Dr. Silver wants Ella to come to the MDA Clinic this Monday (rather than wait until her original appointment in February).

That's why Ella's therapists are having a hard time coming up with exercises that will help her, that she can actually do. Yesterday her OT said she was going to have to think and get back to us regarding things we can do to try to improve her lost range of motion of her arms (and to let her know what the doctors say on Monday because she is open to anything they suggest).

That's why we're struggling so hard to decide whether or not we should try to come up with $4,000 to buy that little wheelchair, as she may not have the strength to use it for very long.

I find myself asking, "What's the point?"

So right now, I'm angry. Ella has SMA, Type 2. Type 2!! The progression of the disease shouldn't be so noticeable in such a short amount of time, should it?

I'm angry because I can't stand seeing Ella struggle and get more and more frustrated every single day because she can't do the things that her mind wants her to do. Her cry breaks my heart into more and more pieces every time.

I'm trying so hard to come to terms with the fact that Ella has this devastating disease, so that I can move forward in the grieving process. But it feels impossible to do so because it continues to get worse right in front of our very eyes. Every time I start to feel a little acceptance, it changes.

And not for the better.

Your Loving Hands...(by Michael & Lindsay)

There are times that we look around us and cannot fathom the reality that stares us in the face.  We cling to one another, each bringing something different to the table.  Our family is becoming more closely knit each and every day...how can we not?


Then we look outside of ourselves.  Imagine being in a dark, cold, secluded hole for months.  The air is stale, the ground is clammy, and your muscles ache from being cramped for what seems like an eternity.  Through the grace and compassion of others you are slowly lifted from the depths of your encasement.  The light is blinding and you raise your stiff arm to cover your shut eyes, allowing them a chance to push themselves open.  The air feels warmer and your bones relax as your muscles begin to soften and extend themselves.  There is a relief.  There are warm, loving hands holding yours.  Voices soothe your ears that have been void of sound.  You feel wrapped in protective arms, guided slowly to a place of rest and refreshment.  You know you must return to the hole, for the hole has been deemed to you, yet with the knowledge that there are others out there; waiting, loving, and offering their gifts...you feel reassured.


We are grateful for all that many have been to us since we found out that Ella has SMA.  The prayers, thoughts, notes, calls, gifts, organizations, e-mails, time, laughter, tears, deeds, and embraces...each of them and all of them have brought us forth from a secluded hole and as we continue to travel that path, we are filled with the knowledge that  graceful, loving hands will always fill the spaces that we cannot.  


Ella is a fortunate soul to have brought herself to the world that includes the people in her life.