Stop...by Michael

Lindsay and I sat at the kitchen table late last Friday night.  She told me that she wishes she could say, "When it rains it pours...",  but she felt she couldn't say that with conviction.  


The implication of this saying lies on two fronts.  The first being that the rain represents something "bad" happening and the "pour(ing)" represents that it's just getting worse.  The second implication rests with the first word of the saying:  "When".  This implies that there are periods of no rain...where things are calm.  


Lindsay continued, "It seems as though it's always raining, always a downpour around here."


We looked at each other and shook our heads.  Our gazes locked in a silent moment of questioning disbelief.  What is happening to us?  To our family?  To our lives?  


Earlier that night Ava became sick; she threw up all over the family room couch while I had Henry and Ella on my lap--on the same couch.  Thankfully Lindsay's sister and brother-in-law were here to help.  Between the four of us we isolated Ava, Ella, and Henry.  We cleaned up the mess that was made in the family room.  We cleaned off Ava and got everybody in their own space for the night.  


That same night Lindsay told me about a conversation she had with Ella's OT. Her OT said that Ella's hands were becoming more seriously affected by the SMA.  She's losing function in them.  As Lindsay told me this my stomach was doing flips...I was feeling sick.  I couldn't do or say anything except shake my head...I didn't know what or how to feel.  Lindsay knew exactly what I was going through at that moment...she's felt it herself.  It's a helpless feeling; surrounded by anger and despair, hatred and desperation.  


Ella keeps regressing...we so desperately want it to STOP.  


Since Ella's stay at the hospital, she is markedly weaker.  She's harder to hold and she struggles more to keep herself sitting up.   She has to put forth more effort to move herself in her manual wheelchair.  Often times she asks to be pushed instead.  It's impossible to watch her get weaker day in and day out.  Every time we think we have figured out something for her...it changes on us.  


We have set up our house with all of the equipment and are in the process of creating routines and schedules.  Everything is different now.  Timing is of the essence.  It looks like a hospital exploded in our house.  Add to this the normal chaos of having three kids, a dog and two cats...and you have a constant state of disarray.  We know time will serve us well in that a sense of normalcy will prevail---we long for that...but until that happens...

The reality of what our family is going through and how we, as individuals, are coping with it continues to beat on us. We didn't really have time while in the hospital to think about all that was to be our lives when we got home...even when we did get home and had all of the equipment strewn about the place, we didn't have time to bring the reality close to us.  Now that the house is basically set up and we are able to stop for a moment and look around, we are faced headfirst with the emotional downpour that surrounds us.  Like Lindsay said, "...it never seems to stop."


To put into words what we are truly feeling at this time is next to impossible.  Our feelings are at so many different levels, different layers that overlap.  We are pulled in so many different directions, and for the most part we have no idea where they are leading us.  The uncertainty of the future alongside the struggles of the present make for an experience that defies explanation.  We are beyond numb.

"It's not real" we tell ourselves...but it is.  And it's slowly chipping away at us.  

We go on with our daily lives, doing what we have to.  We do the best we can, just like everybody else, with what we have.

A Virtual Tour of Ella's New Equipment (by Lindsay)

I thought I'd share some pictures and videos of Ella's new equipment in the house. It's been quite the lifestyle change for us adding these new treatments to her care and it will still take some time to get used to them (both on a physical and emotional level).

Here is a picture of our living room after her new equipment was delivered when we got home from the hospital on Monday (it doesn't include all of the supplies that we received, which we will continue to receive on a monthly basis).

Below is a picture and video of Ella using her nebulizer. She will most likely only use this when she is sick. It helps to break up secretions in her lungs, making it easier for her to cough them out. When she is sick, she will use this up to four times daily.

Here is a video of Ella using her "Vest" (a.k.a. "Shake"). I don't think I need to include much more explanation other than it helps to break up lung secretions. This is by far Ella's favorite treatment :) She does between 10 and 20 minutes for each treatment (in 5 minute sessions). When she is healthy, she will do this treatment twice every day. When she's sick, she'll do it four times a day. And yes, she "sings" pretty much every time :)

Below is a video of Ella using her Cough Assist machine with her suction machine. The Cough Assist machine blows air into her lungs, and then rapidly sucks it back out, simulating a cough (since she is too weak to effectively cough on her own). This treatment always follows a Vest treatment. The video shows one "cycle" of five breaths, followed by suction. Each treatment includes five cycles of at least five breaths. When healthy, the five cycles will be done twice a day, and when she's sick, four times a day.

The following picture is of Ella's NG-tube pump (nasogastric tube). Even though she is feeling much better, she still isn't eating. We're not entirely sure why she doesn't eat much (she didn't before she was sick, either). She is capable of eating, she just chooses not to. So whether it's due to weakness or something else, we don't know. But she needs nutrition. So she does an hour-long feed four times daily of Pediasure formula (sometimes we'll get a few bites of regular food in between tube feeds). Once Ella is completely recovered from the RSV and pneumonia (and her lungs can handle surgery), she will have a g-tube placed (in her abdomen). This will be a much more convenient way to do her feeds (and without having a tube sticking out of her nose!).

Next is Ella's pulse-ox machine. This one is quite simple. The probe is taped around one of her big toes while she sleeps and measures her beats per minute (BPM) as well as her oxygen saturation levels. An alarm sounds if her levels are out of the normal range for someone with SMA. So far, Ella's levels have been where they need to be.

Finally we have Ella's Trilogy, or Bi-PAP machine. This machine helps to make sure that Ella's lungs are filling to capacity while she sleeps. It also gives her weak muscles a break at night so she can get a better sleep and have more energy while awake. It doesn't actually breathe for her, it just assists her lungs. She uses this every night and at nap time, whether she is healthy or sick. She will always use it from this point on. It looks a little scary, but now that she's used to it, it's quite soothing for her and she falls asleep very easily with it on.

So as you can see, our little Squishy is quite the trooper. In a matter of 12 hours, she went from having absolutely NO medical intervention to having SEVEN machines that she will use on a daily basis for the rest of her life. We are so incredibly proud of our brave little girl :)

Time for Ella...by Michael

Two hours she spent at the table.  
She didn't want company.  
She didn't want to interact.  
She didn't want help.  

She just wanted to play. 


Nobody asking her questions.  
Nobody hovering around her. 
Nobody trying to make conversation with her.

Just to be alone.  To enjoy life alone.  To be alone with her own thoughts in her own world.

Ella wanted to be alone...


Six days and five nights at Children's Memorial Hospital was enough for Ella.  While she enjoyed having so much attention given to her I think she really enjoyed coming home.


While at the hospital Ella had absolutely no control over her environment.  She learned quickly that every time a person she didn't know walked into the room and was dressed a certain way (like a nurse or a doctor) that something most likely was going to happen to her...and it might hurt or be unpleasant.  She learned quickly to say, "All done" or "Bye, bye" even before they could say "hello" to her.  She also learned that they were exceptional people.  They treated her with respect, kindness, and a gentle hand.


Even though she thought something was going to happen when a staff member entered the room; and even though she tried to get them to 'maybe' leave without having to do something to her; she knew that she did not have control over her environment or the authority to decide who was in it.  At this realization she resorted to her charming self and everyone fell in love with her.  It was a graceful and beneficial dance she did with the staff...they were able to do their all-important job with the skill and expertise they so naturally possess and Ella won over some more hearts!


When we returned home our house was quiet.  Within a short amount of time the house itself was filled with equipment. Before she knew it there were an extra 5-6 adults in the house helping to get things in order.


Ella's fatigue and exhaustion kicked in.  She grew impatient and cranky.  She did the best she could as we had to set up (at least some) of the equipment and get her room rearranged for her slumber.  Without the help of four men from church the night would have been a complete train wreck.


Ella was in bed and asleep before 9:00 pm...it was amazing on the part of those who helped us.


The next morning we did her therapy and sat her at the table to eat.  Lindsay left for a few hours in the morning and I was home with Ella.  I began straightening up the house and going through the myriad of bags we accumulated from our hospital stay and the fundraiser.  I thought I might have 20-30 minutes tops to go through some of the things before I had to turn my attention to Ella...not so.  I ended up with two hours!!


Two hours she spent at the table playing by herself...happy as could be.


She needed that alone time.  She needed to be a regular 'ole kid just playing by herself without a care in the world.  

Sometimes it's easy to want to be with Ella all the time...it's in our nature to want to help her.  She was amazing to watch this morning as she played by herself, creating her own little world, not being bothered by the limitation SMA has placed on her.   There was a certain relaxation that came over me as I saw her out of the corner of my eye while I was busy organizing and cleaning.  A calmness...an innocence...that only childhood can produce.


She needed her "Ella Time"...(a short video)...

Children's Memorial Hospital Pictures

Since we were unable to post pictures with our blog entries while in the hospital, here are some photos we took during our stay...

Waiting in the emergency room.

Chest X-ray

First night in the hospital...finally fell asleep after midnight.

First cough assist treatment.

Resting after having her NG tube placed.

On our way to the PICU (pediatric intensive care unit).

Ella's room in the PICU.

First "Vest" treatment.

First time sleeping with the BiPAP.

Waking up after her first night with the BiPAP.

Heading back to the pulmonary floor.

Serious bed head.

Bath time!

Ahhhh, clean and starting to feel better :)

Whatever works for ya, babe :)

View from the pulmonary floor (not from our actual room).

Enjoying a chocolate covered strawberry.

Taking one last snooze before getting ready to go home.

Ready to go!

And for your enjoyment...Michael doing Cough Assist :)

Going Home (by Lindsay)

We're just leaving the hospital.

Our feelings are surprisingly bittersweet.

I'm excited to go home. Living in a very cramped hospital room for the past 6 days has been rough. We haven't gotten much sleep. We miss our family, friends and regular daily life.

But I'm nervous. I'm nervous to go home. I'm nervous to be responsible for all of these new treatments that Ella will need on a daily basis. I'm nervous about how I will find the time to add these treatments to our already jam-packed days.

For now, this is what we'll be adding to our daily routine:

• NG tube feedings 4 times per day (an hour for each session, not including set up/clean up)
• Vest treatments 4 times per day (20-25 minutes for each session)
• Cough assist and suction 4 times per day (15-20 minutes for each session)
• Periodic pulse-ox checks throughout the day
• BiPAP setup at bedtime every night (and possible adjustments/comfort throughout the night)

The only change once Ella is completely healthy (in 2 to 3 weeks) is that her Vest and cough assist treatments will only be once or twice each day, rather than four times.

We're also going to have to rearrange some things in our house. For one, we'll have to make room for all of her new equipment. Most of it will go on the first floor (except for the BiPAP, which will go in Ella's room).

We're going to have to figure out an organization system for all of her supplies. Not only will we have the equipment, but we will have all the disposable supplies that go with them. Tubing, tape, syringes, pads, masks and bags to name a few. And I'm talking a month's supply of these things, not just a handful. We'll have to figure out what will work best for our family and then start organizing (which, on the plus side, is something I LOVE to do). Dr. Prestridge said we should definitely invest in a label maker :)

Currently, Ava and Ella share a room. Ava is in a twin bed and Ella is in a crib. We're going to be switching Ella to a full sized bed so that we have easier access to her and her equipment and also so we can lie with her if we need to (the other night I slept with Ella IN her crib...I love our Squishy, but that's something I'd rather not do again if I can help it).

This means Ava and Henry will go back to sharing a room (for now anyway). We'll turn their twins into bunk beds, which hopefully will be fun and exciting for them :) And it will be better for Ella to have her own room anyway, since her machines will not always be quiet when she sleeps.

So while we're happy to be going home, we're a little apprehensive. We're leaving the safety of the hospital and entering a challenging world of daily medical intervention.

It's a little scary.

Ella's Day...by Michael

The first hug that wrapped around each of us as we entered York High School on Feb. 19, 2012 brought with it tears. The last one as we left summoned the deepest feelings of love and gratitude that we have ever felt.


Ella's Day cannot be described in any other way than to say it was an incredible way for so many people to show their love and support for Ella and our family.


Over the past five and a half months, while the planning was taking place for this event, Lindsay and I met with the lead coordinator for a total of two times. She took the healm to orchestrate the event, showing the utmost in respect for our family and our emotional vulnerability.


After returning to CMH after Ella's Day, we sat in the hospital room with our Squishy, we were in awe of what we imagined must have taken place in order for this day to be the incrediblhy positive reality it was. We knew that so many people in our lives and a host of businesses came together to help. We knew that people who have no connection to us, apart from hearing or reading Ella's story, stepped forward in so many ways; pouring out their generosity. We knew that people spent hours upon hours coordinating, meeting, conversing, and making decisions on our behalf...on Ella's behalf. We knew that even though people have lives of their own, problems of their own, and struggles of their own they found time to focus their attention on Ella.  We knew that Ella had found a place in the hearts of so many.


Despite our exhaustion from spending the three nights and four days at Children's Memorial Hospital prior to the event helping Ella battle her first case of pneumonia (which was brought on by RSV) we knew that being at Ella's Day was important to us for so many reasons.


Our lives changed upon learning that our youngest has SMA. Our daily life is (and will continue to be) strikingly different to say the least. Our perspective on life and what it holds for us has taken on a new meaning; one that includes the constant reminder that not only is life itself precious beyond our deepest awareness, it is also intertwined with everyone else's life in ways that can never be imagined.


Lindsay and I sat quietly with Ella as she fell asleep. The hum of her bipap machine softly telling us that it was doing its job was the only sound in the room. She had a hold of each of our hands as sleep began to overcome her. I often wonder what she thinks as she sits quietly with us. I know her mind is as beautiful as her spirit; and just as strong, too.


Lindsay and I will continue to hold fast to the promise we made to each other, the promise we made to Ella. We will continue to do our very best for her, for Ava and Henry, and for each other. That promise has been made easier to fulfill because of all the wonderful, caring people we are privileged to have in our life.


The day that was set aside for Ella has come to a close. The day that brought so many people together in so many ways has found its own slumber. The day that will forever bring memories and feelings of warmth, comfort, and healing to us has gracefully found its way into our hearts and will stay there forever.

Saturday Update (by Lindsay)

Ella is continuing to improve. She's laughing and smiling and starting to get back to her old self (but she's still pretty weak).

Ella's right lung still has a little "squeak" to it, but it's much better from when she came in Wednesday night.

We met with Dr. Prestridge (Ella's pulmonolgist) this morning and it looks like Ella will be able to go home on Monday. Her new equipment will be delivered to our house that day, and as long as the home care specialists can come to set it all up for Ella on Monday we can go home then.

Tomorrow (Sunday) is the "Ella's Day" fundraiser in Elmhurst. As long as Ella continues to be doing well, our plan is for Michael and me to come to the event while my sister and brother-in-law stay with Ella in the hospital. Dr. Prestridge said this is completely fine and that the hospital has our cell phone numbers, should they need to contact us.

Just as a note, we have been writing these blog posts from our phones and we are unable to post pictures using the mobile version. Once we get home we plan to post the photos/videos from her stay (however, we have been posting some on Facebook already).

Thank you all again for your continued thoughts, prayers and encouragement. We can truly FEEL it and it helps tremendously.

Ella Update...Friday (by Lindsay)

We've been at the hospital since Wednesday night. Ella has been having aggressive treatments to help her pneumonia and RSV symptoms, and she seems to be making some improvements.

They've taken her off IV fluids since she is meeting her nutrition goal with the ng-tube feeds (she still needs the IV for antibiotics).

She spent the night last night in the PICU (pediatric intensive care unit) for her bi-pap initiation, which went very well, considering it was her first time using the machine. She was able to return to the pulmonary floor today. Tonight she will use her own bi-pap machine that we will be taking home with us (last night she used the hospital's).

She's been using the "vest" treatment to help break up chest secretions (this can be used in place of the manual CPT/BD). Both of these treatments are followed by the cough assist machine. She's slowly but surely getting used to cough assist. It's an uncomfortable piece of equipment, to say the least.

We're not yet sure when Ella will be able to go home. She isn't going to recover any more than she has at this point for a couple more weeks, but we can continue her treatments at home to help her symptoms until she's recovered.

However, we have to be trained (and feel comfortable) on how to use all of the new pieces of equipment. Just a few minutes ago Michael and I used the cough assist and suction on our own!

We also have to have all of these pieces of equipment ready for Ella at our house when we bring her home. Some will be here (her bi-pap is already here for her to use tonight), but others are being delivered to our house. Once they are at our house, someone from the home assist company will have to set up the equipment for her (adjust sizes, settings, etc.). As of now, her Vest is being delivered tomorrow (Saturday) and her cough assist, suction, humidifier (for bi-pap), pulse-oximeter, and ng-tube pump will be delivered on Monday. They are trying to push for those things to be delivered tomorrow, but we were told it is very unlikely since it's so late on a Friday. So we'll see.

She will be keeping the ng-tube in place for feedings when we go home to make sure she's continuing to get the nutrition she needs. Once the RSV is gone in a few weeks she will have the g-tube surgically placed. The surgery is inpatient and will be done here at Children's.

Michael and I are tired and overwhelmed. We miss Ava and Henry (they can't visit because they are under 12 years old). But we wouldn't want to be anywhere else with Ella right now. We have no doubt that she is receiving excellent care, provided by professionals who are very familiar with SMA.

We're excited to go home, but nervous because of how different life will be. We will once again have to get used to our new normal.

And in time we will.

At Children's Memorial Hospital (by Lindsay)

We're here. In the hospital. With Ella.

She has RSV (respiratory syncytial virus) which has led to pneumonia. It started as a simple cough/cold, but it is difficult for someone with SMA to cough up the secretions to fight off the infection, thus it can lead to a more serious illness.

So here we are. The pulmonary department of Children's Memorial Hospital in Chicago (however, we will soon be moving to the PICU).

We met with the entire pulmonary team this morning. Everyone we have spoken with is incredibly knowledgable of SMA (which is such a great feeling). Ella is in SUCH good hands here. The attending pulmonologist wants Ella to stay until her lungs are clear and she's stable enough for us to continue her care at home.

We were told to plan on staying at least through the weekend, if not until next week.

Wow.

So far Ella's treatments have included the following:

• Oral antibiotics
• IV antibiotics
• IV fluids
• ng-tube (nasogastric tube) for feeding
• CPT/BD (chest physical therapy/bronchial drainage) every 4 hours
• Cough assist machine (forces air into her lungs, then rapidly sucks it out, simulating a cough) every 4 hours
• Suction to remove secretions from her lungs
• Nebulizer treatments
• Bi-pap machine (non-invasive ventilator) during the night. Soon she will be moving to the PICU for a few days to get this piece of equipment set up for her.

All of these treatments (minus the IVs) will continue when we get home (and most will continue on a daily basis even after she is healthy).

Once the infection clears completely (in a few weeks) we will probably have a g-tube surgically placed for feeding assistance.

So right now our goal is to get her lungs cleared using these aggressive interventions and have her become stable enough to go home.

I would say we're overwhelmed, but that doesn't quite do it justice.

Our lives are going to be completely different now. In the past 24 hours we went from Ella being independent of medical interventions to being dependent on a variety of pieces of equipment that she will use on a daily basis for the rest of her life.

I don't think we're going to know what to do when we get home.

Of course, Ella is being the trooper that she is, but there's no question that she's uncomfortable and doesn't enjoy being confined to her hospital bed. And saying that these interventions are uncomfortable for her would be quite the understatement. They will all take some getting used to.

Thank you for your continued prayers for a quick recovery for her.

What We Bring to Each Other...(by Michael)

Ava has been intrigued by 'where we come from" or as she so eloquently puts it, "who made me (or mommy, or daddy, etc)?".  Typical "children" questions that require tact and finesse on the part of the parent when answering.


Lindsay and I have approached this inquiry with a simple answer to the "who made so-and-so" question...our response has been, "God and 'this-and-that person'".  For example...


"Who made Mommy?" asks Ava.
"God, Gramma, and Grandpa," replies Michael or Lindsay.


"Who made Daddy?" Ava continues.
"God, Yiayai, and Pappou," we tell her matter-of-factly.  


And so it goes, Ava runs the course of our family history, interrogating us repetitively.  Sometimes I can hear her under her breath reciting who made whom...of course, God is always the first name she speaks.


Recently, however, her questions have gone a bit deeper,  Our four-and-a-half year-old is taking it to the next level.  After confirming who has made whom she has now begun asking the "how" question.


"How did God, 'so-and-so', and 'so-and-so' make 'whomever'?" she ponders aloud.


My response..."With love".  


She was satisfied.  For a brief moment.  


I knew it was coming but I was hoping maybe her silence was going to be a moment that would turn into some sort of distraction, taking her mind and thoughts elsewhere.  Not the case.  She persisted with the next logical question.  


"How does the love make people?" she questioned with a tilt of her head and rise in her voice.  


I looked at her; the beautiful eyes she has locking on my face; her expression seeking an answer; her silent patience surrounding us while I sorted through my mind's arsenal of words to use.  


With a smile I said, "Love makes people through laughter, talking, hugs, and kisses.  Love is what we bring to each other."


She smiled at me and went about her business.


Lindsay and I are fortunate people.  We have each other.  We have our respective families.  We have our respective and shared friends.  


We are fortunate in another way as well.  We have our children.  Three beautiful people who love us unconditionally.  Three exquisite personalities that fill our house with energy.  Three gentle souls that bring to us the innocence of childhood. 


Our days are filled with Ava, Henry, & Ella.  Our lives revolve around their care.  Our hope and perseverance is fueled by their existence.  


Our lives are filled with laughter, talking, hugs, and kisses...the "stuff" that made them is coming back for us.

Just a Month Ago...(by Michael)

Where was I one month ago?  Hmmm, mid-January.  I suppose if I look back at my calendar I could probably figure it out.  


Where were you?


This past Saturday (Feb. 11, 2012) our family went to the FSMA Illinois Chapter Meet & Greet.  We went to meet other SMA families.


What we found there was so much more.  


Dedication and love.  We met with other families affected by SMA, we met with children who have SMA, we met with adults who have SMA, we met with people who have dedicated their careers to helping those with SMA.  It was incredible.


Among all of these people there was one that stood out to me.  I never actually met her yet I was touched (to say the least) by what she said during our lunch together as we all crammed into the adjoining conference rooms; she was in the room next to ours, separated by a large window and a door.  


Her child died one month ago from SMA.  Her tearful eyes shared her grief as she spoke; she was consoled lovingly by a man standing next to her, holding her shoulder as he shed tears.  


One month ago her loss occurred and here she sits...with a roomful of people--probably many of whom she didn't know.  She could have easily and blamelessly stayed at home this day.  She did not.  She came out in the bitter cold and met with people who still have their children; who still fight SMA.  By being there she still fights SMA...despite her loss.  She brought herself to a place filled with pictures of gorgeous children all fighting Spinal Muscular Atrophy in their own heroic ways.  She placed herself in a roomful of people and let her vulnerability be known; trusting strangers with her thoughts, emotions, and heartache. 


The room fell silent amidst her sharing.  Waves of emotion passed through the door and the glass partition which separated the two rooms yet could not separate the people within the rooms.  The tears of this mother and her companion spoke to every heart present there that day.  Her bravery to be there, for whatever reasons she had, is a testimony to the love she has for her baby.  


Just one month ago.

Rising Numbness...(by Michael)

Ella takes Lindsay's hand just after her birth

The past week or so has found me feeling different somehow.  


The look in Ella's eyes and the expressions she is beginning to make are grasping me more tightly than I expected they would.  Having two other children, I know that a child's personality begins to manifest itself a bit more outwardly at about the age Ella is at right now.  She is starting to interact in a way that speaks the message that she, as a person, is on her way to understanding the world around her.  She is in the throws of sensing that she can make an impact by her actions, words, expressions, and emotions.


Ella's development has taken a slightly different route than Ava and Henry's did simply for the fact that she has SMA.   


A month ago she may have looked at me with a look of guarded bewilderment due to her limitations...I might have felt discouraged not knowing how to deal with it.  Now her eyes speak to me showing that she is beginning to understand; they say, "I want to do this but I can't."   Falling into her eyes I give her a look that tells her that I am here for her...in any and every way she might need me.


A month ago she may have felt proud of something she did, as any child her age would.  My reaction at that time would have an underlying feeling of "How long will you be able to do this thing?"  Instead, I find myself holding her more closely to me with unspoken encouragement  as she makes her way through the moments of her life.  


There's a shift that has happened in my approach to being a parent of a child with SMA.  A shift that I knew would come to me but did not know when.  I am still in the process of shifting; mentally, spiritually, and physically.  It will take time. I know.


The feeling that has stirred itself in me this past week has lain dormant for years.  I haven't felt this way in a very, very long time.  I never thought I would again.  


The feeling does not fall in the spectrum of the what we normally consider each day in the face of turmoil...those of denial, anger, bargaining, depression, acceptance, and so on.  The feeling that is playing its role in my life holds itself to a another set of rules; another way of expression.


I'm numb.


I'm numb yet I can sense the other feelings that surround my life--they are still there.  They are, however, cloaked by a numbness that rises from deep within me.  It rises and fills my body, mind, and soul.  It allows me to face some of the terrible thoughts I have about the what is happening to Ella; without me losing control.  It affords me the opportunity to speak to others about Ella, our family, and SMA.  It generates a protective layer around me so that I can pray in thankfulness for everything I have that speaks of love.  It is a necessary feeling; one that shuts down the other feelings, if only for a brief moment, to help keep my sanity in check.  


I know that the numbness will subside.  It will wax and wane.  I know that the raw emotions that must surround me will do so in their due times...coming and going as they will.   


The rising numbness must take its place in the traveling of the road I am on.  It's a deep numbness that we all have within, waiting for its time to rise up and gather itself around us; to protect us, allow deeper reflection, and provide a hiatus from the tearing emotions that have been and will be.   

Officially Vertical (by Lindsay)

We got Ella's stander today!

Now we can start having her stand for longer stretches of time (working up to two hours per day).  


This will help her in many ways, including increasing her bone density, helping her respiratory function, etc.


Next order of business...find a place in our house for another large piece of equipment!

Standing tall while enjoying a book.

Stand by me; Walk with me...(by Michael)

She looks good, doesn't she?


Upright, feeling gravity but not succumbing to it, using muscles that have not long been used, standing.


She delighted in the prospect of standing and her face lit up when Lindsay placed her knee immobilizers in their respective places.  We put her shoes on without her AFO's (Ankle-Foot-Orthotics) and let her have at it.


I snapped several pictures, each showing a slightly different angle and facial expression...this one captures her in a moment that she is more focused on her play than her standing...a feeling we want her to continue to have---just like you and I have.  When we're engaged in something while standing, we really aren't thinking about standing...we're focused on our task.  We want that for Ella.


Movement was the next logical "step" so we put on her AFO's and brought her to the dining room.  While walking demands more from the body and gravity will delight in pulling one down during the task, we were right there with her.


She knows exactly what to do.  It's amazing and quite encouraging.  The motion of her legs is all her.  Lindsay simply keeps her from falling...Lindsay takes care of gravity for her.  Take that gravity!


The expression you'll find on Ella's face is one that we, as her parents, recognize as her expression of complete joy and pride, excitement and satisfaction.  She wanted more.  More vertical time, more walking time.  We have to be careful not to wear her out since we know that's dangerous for her.  We have to be careful how long we assist her as her dependence on us becomes more intense as gravity continues to grab for her...we don't want to injure her in the name of holding her up...it's a delicate balance between the experience her mind, body, and soul gains from this vertical time and the caution we must consider.

For now, however, enjoy a bit of walking time with Ella~~

Identity Theft...(by Michael)

The parking lot was full of cars that made no noise as they sit, empty.  The familiar sounds of the big city lay somewhere in the distance, barley audible yet crept into our ears, lightly tapping our eardrums. It provided a background for the emptiness that careened across our awareness of reality.

Ella was placed gently into her car seat, a smile ran across her face as she looked at us.  We both stroked her cheek with the backs of our finger, tilted our head a bit as we gazed at her, and took in a deep sigh.  I stepped back as Lindsay closed the door and we made our way into the car; finding the familiar yet oddly strange places we have occupied for years.

The slam of the doors ushered in the silence that waited for us in the car.  The background noise that was the hum of the city disappeared behind the glass and metal of our Honda Odyssey.  We stared off into the distance that offered us a glimpse of the evening sky of Chicago; our minds beginning their own journey that would prove to be the ride of our lives.

Our eyes, fixated on nothing in particular found their way to each others and not a word was spoken.  Tears seemed like the only option yet they too lay silent in their shock.  The only sound that penetrated the silence was that of Ella cooing.

The overcast silence was broken by the five words we'll never forget.  "Now what do we do?"

When we knew, after Ella's EMG, that she had Spinal Muscular Atrophy, we knew what that meant.  We knew all to well.  Since that time our lives have changed dramatically.

SMA has not only robbed Ella of her ability to control her muscles and all that goes with that it now attempts to rob us of our identity.

The struggle we face besides the physical, emotional, and spiritual struggle is that of who we now are.  How are we defined as individuals, a couple, a family?

We are fast growing concerned with how SMA has attempted identity theft on our family.  It has become a challenge for us and everyone we know to figure out how to approach the social impact a terminal disease housed in a child's body.  

There is no doubt that SMA takes a front row seat in our daily lives.  It interrupts almost every moment that we experience.   It cannot even be said that it affects us from morning to night, for it also affects us throughout the night.  It has barged its way into our lives and threatens to take over.

We are not going to allow SMA to define us.  We cannot.  We will not.  

Lindsay is a loving, open, cheerful person who looks at the bright side of life.  She has always been one to find the good in people, take a genuine interest in their lives, and has a love for laughter.  

SMA will never take these attributes away from her.  

Ava is a beautiful, intelligent, sensitive flower that has found that her compassion has a place in our family.  She has found herself battling the affects of SMA and turns to us daily to guide her through her anger, jealousy and misunderstanding of SMA.

Henry is a vibrant, energetic boy who has a side that offers love, kindness, and tolerance.  He has had a rough start to his life facing some medical issues of his own and as of late has been seeking his position in the family.  He seeks to be fun, helpful, in control, and silly. Often times he hits the mark.

Ella is a tender soul that boasts a toughness not often found.  She takes what life has given to her with grace, dignity, strength, and pride.  We shall learn much from her.

As for myself, I am a person who cares deeply about the ones I love.  I have walked through my life gathering experiences that have given me an exterior that can only be penetrated when I so desire it to be.  I give myself wholly to my family for they are all I have.

We find ourselves redefining ourselves.  It must be a definition that includes all that we are and were meant to be.  It must include all of it.

In the midsummer heat of July, 2011 SMA threatened our lives for the first time.  It penetrated rudely into our whole fabric of who we are and who we want to be.  It continues to barrage us with its insidious yet unmistakable havoc.  

We will not

                 we cannot 

                               be defined by it.