A Tighter Hold...(by Michael)

A three-year-old with SMA Type 2.

She can sit.  She can move her arms and legs.

She cannot walk.  Her range of motion in her shoulders and hands are both compromised.

She, does, however, know exactly what she wants.  And often she cannot get it herself.

She wants to sit on the couch with Ava and Henry.  We put her there.

Moments later, she wants to sit on the floor with a specific toy.  We oblige.

Still moments later, she wants to sit on the chair with Sasa...we place her there.

She wants us to carry her around, sit on our laps, go outside.

She doesn't want to sit in her wheelchair.  I don't blame her.

She's three and she wants to explore her world.  The frustration she feels is evidenced by the screaming and crying we have been going through lately.  Her frustration becomes ours.  If we say "no" to a request, for whatever reason, the tantrum begins.  She flails herself down, or throws her head back while screaming at the top of her lungs (which is probably good for her respiratory system!).  Of course, wherever she ends up in the the tantrum in terms of her positioning, she cannot get out of it. We help.

I sat her down on my lap just before bedtime...just her and me.  I asked her why she has been crying and screaming the past few weeks...she replied, "Why am I?".  I asked her to tell me.

She placed her finger in her mouth as her gaze drifted away from my face and said softly, "Because I want stuff."

"Of course you do", I replied, "and sometimes we will say 'no' and sometimes we'll say 'yes'"

She didn't look at me still.  She rested her head on my shoulder.  Silence. A tighter hold.   

I know she is coming to some sort of terms with her SMA.  

She made a comment to Henry earlier when he asked about her power chair.  It was a response that came fluently from her mouth, clear as a bell.

"I have my pink chair because I can't walk."

I cannot imagine not being able to move myself from one activity to another at will.  I cannot fathom the frustration she must feel watching her brother and sister do many of the things she simply cannot.  I struggle to comprehend the strength and resilience, bravery and fortitude, she carries with her each and every day.

August is SMA Awareness Month.  A time when the SMA Community reaches out to the world to help people understand this disease.  A time when the same community looks at one another and just knows.  

The awareness of this disease, for the families living with SMA, is an awareness that is forever with us...

Gone Are the Days...(by Michael)

Lindsay and I have been discussing "stages of life" topics lately...namely relating to our kids.  Now that Ella is potty trained and has given up her nap our lives are much different than the past 5-6 years has shown us.

Ava is 6, Henry will be 5 in late October, and Ella is 3.  Three kids close together with similar and yet, very distinct, likes and interests.  

Gone are the days of crying being the only means of communication, although crying still permeates throughout the house!  

Gone are the endless changing of diapers, although overnight the younger two wear a diaper (Ella) and a pull-up (Henry).  

Gone are the days of not being able to explain the reason for things...such as parental decisions and the way the world works.  

Gone are the days of chopping up the food so they will eat it.  

Gone are the days of kids home all day as all three of them are now in school come this Fall!!

Gone are the days of having to watch them constantly as they are now able to play for extended periods of time, either together or alone.  

Gone are the days of having to work around nap schedules, which kept us home-bound, as we can now take all three kids out at any time as long as we plan for Ella's feeding.  

Gone are the days of strollers as they are now on the highest shelves in the garage.  

Gone are the days of high chairs and booster seats, at home and out to eat.  

Gone are the days of sleepless night after sleepless night...now that Ella has given up her nap she sleeps through the night so much better...yes, we still have to wake to stop her feeding, and yes, we still get woken up with the normal kid wake-up calls (bad dreams, loneliness, etc.)..but the sleep we now get is such an improvement over what we've had over the past 6 years.  

Gone are the days of having to hold back the sarcasm as they are developing their own senses of humor.  

Between the two of us, Lindsay and I, we will miss the baby-phase.  

Between the two us, though, we look forward to enjoying this next phase...whatever it holds for us.

Backyard Campout (by Lindsay)

It all started when we were sitting out on the deck one afternoon, and one of the kids said, "I wish we could sleep outside."

Michael and I looked at each other, then replied, "Well, we actually CAN sleep outside if we get a tent."

Of course from that point on, all we heard was, "When can we get a tent so we can sleep outside?!?!?"

So we got a tent.  We needed to get one big enough to fit all of us as well as Ella's equipment and luckily we found a great deal for one at Costco :)

So last Thursday night we set up camp and we were all super excited about it :)

That night we got in our PJs and sat around the fire pit and made s'mores.  Once it was dark out, we tucked the kids in bed and hooked Ella up to her bipap and feeding pump.  Of course they didn't fall asleep for quite awhile, as they were so excited :)  But eventually they did.  Michael and I stayed up a little longer by the campfire, but soon we went to bed in the tent as well.

Ava and Henry were passed out the entire night.

Ella was a little bit of a different story.  She woke us up many times whimpering.  She wasn't fully awake, but we think she was just uncomfortable.  We had all three kids sleeping on the mattress from our fold-out couch in our family room.  The mattress is definitely not the most comfortable thing in the world.  So finally, around 4:30 am, we had Ella sleep with us and she slept until morning (we were on a memory foam mattress topper).  But next time we camp out in the tent, we're going to bring out our old crib mattress for Ella to sleep on, hoping she'll be more comfortable :)

When we woke up to the birds chirping, all three kids kept talking about how much fun it was to sleep outside and how they want to do it again!  We're planning our second backyard campout for sometime this week :)

And maybe, just maybe, we'll get to the point of actually going somewhere else to camp.  

We'll see ;)

Here are some pictures from our little backyard adventure:

"Seeing the Future"...(by Michael)

This picture was taken after Ella had "scooted" herself away from the leg of the coffee table (behind her) to where she is in the photo.  The smile on her face really tells it all...pride, happiness, self-satisfaction, and a will unmatched by many.

As we look to the researchers and their tireless work to find treatments or a cure for SMA we must live day by day with the disease.  It works itself into the fabric of our lives; primary target...Ella.

The great work being conducted by so many people have gotten us closer and closer to a viable treatment for SMA.  I can remember saying, when Ella was first diagnosed that, "Our job is not to save her; our job is to keep her alive until they find a cure".  

Over the past two years we have learned much about the human body, the psyche of the soul, the love of others, and the spirit within.  We continue to learn more about how best to care for our daughter.  As she grows older the challenges change with her as the disease grows as well, yet as she grows she becomes more aware of herself, of SMA, and of her role in battling against it.

This past week of therapies has allowed us to see a small glimpse of the possible future.  A future that allows Ella to experience standing, jumping, and a command of her world in a way that she hasn't yet.

In one part of the video she is in an open "cage".  A therapeutic piece of equipment that allows for a plethora of activities (oh to have one of these!).  In another part of the video she crumples a piece of newspaper...something so simple for most people yet it provides excellent hand work for Ella. 

In all, Ella is challenged during every session...and she is a remarkable as I feel I am "seeing the future"...

   

Ella and Normal Moments in the News!! (by Lindsay & Michael)

On June 9th, "Living Healthy Chicago" (part of WGN) ran their story about Ella and the organization, Normal Moments!

Check it out!