The Best Place (by Lindsay)

Right now, things are ok.

Actually they're better than ok.  I feel like I am in the best place that I've been since Ella's diagnosis.

I'm so much closer to accepting that SMA is part of our life.  Do I like it?  Of course not.  I hate it.  But I'm starting to accept that Ella has this disease and we can't change that at this point.  And I'm really starting to go on with life.  And it's becoming "normal" for us.

And then there's the eating disorder.  At this point, I'm very close to being considered "recovered".  I only have one more session with my dietitian and one more session with my therapist.  They both feel that I'm ready to move on (as do I).  It's a wonderful feeling.

But I think the biggest reason for being in "the best place" is because of our hope.  Ella has continued to improve, which is not something we planned on after hearing her diagnosis.  Children with SMA do not typically improve, rather, they usually get worse.

And Ella got worse for a while.

But her improvements lately have given us a new hope that we never had before.

Here is a video of Ella from a year ago.  As you will see, she is unable to lift herself up and struggles to lift her arms even a small amount.

Now here are two videos showing what Ella has been able to do in the past two months:

And finally, here is Ella's latest achievement.  Today she was able to take one small step while only holding my hands!  This means she was bearing her own weight and only using my arms for balance!  This one little step is a really BIG step for her progress!!

We're not really sure why Ella has been making this wonderful progress in the past few months.  

We think maybe her diet might be playing a role.  She started this Amino Acid diet last March, but she was throwing up at least one feed every day.  It wasn't until August that we finally figured out the vomiting was due to acid reflux, so we were able to correct the problem.  Since then, Ella has been getting her full nutrition every day.

Another change since September is that we have been working on walking with her a little bit every day.  This has probably been building strength in muscles that she hasn't used in a long time.  

Whatever the cause, we are filled with so much happiness watching her make these improvements!

This year, the holidays are extra special for me.  

In the past, the Christmas season has always been my favorite time of year.  But last year was different.  Last year was our first Christmas since Ella's diagnosis.  And I didn't have much joy in my heart.  I basically wanted to skip the holidays altogether.  

But this year, I couldn't WAIT to start the holiday season!

This year I'm filled with joy.  I'm filled with love.  I'm filled with hope.

Take a Breath...(by Michael)

The day that kicks off the holiday season has once again come to a close.  From here on out minds of all ages turn toward other delights.  We venture to the celebration of Christmas, taking the holiday season as a way to rekindle our love of humanity.  The rituals, festivities, and traditions of the season accentuates the meaning within them.

Thanksgiving provides us with a time to surround ourselves with those close to us; to celebrate all that we have in our lives.  It allows us to sit in contemplation of life itself.  It prepares us to enter into the holiday season with hearts and minds full of generosity, goodwill, and peace.

Thanksgiving paves the way for the winter seasons' celebration of Life and Light.  It carves a path for the sharing of good fortune, the extending of a helpful hand, and the realization that life itself is a place in which we can take solace.    

Thanksgiving affords us an opportunity to look at our childhood and remember the warmth that we felt being loved, if only by one person.  An opportunity to see the delicacy of life, in those we have known for so many years, as we watch them grow old before our eyes.   

Thanksgiving gives us the seat in which we can sit in reflection of our own lives; where we have been, where we are now, and where we might be going.  

Thanksgiving takes us by the hand and promises to lead us into a world full of love; sending us forward yet always with us as we welcome the good news of our Savior and the goodness that lies within us, which lovingly spills out to others.

Thanksgiving fills out souls with the realization that we are all one.  It gathers us together while allowing our individual selves to flourish among those we love as well as among those we do not know.  

Thanksgiving brings about the laughter and stories, the sharing and caring, the spice of life that threads itself throughout the rest of the holiday season.   

Thanksgiving allows each of us to turn to ourselves and reflect upon what it is we are really doing here.  To reflect on the innocence of childhood, the complexities of adulthood, the mysteries of the after-life, and the wonderment of the gift of life.

As we all head away from Thanksgiving and into the holiday season take a breath as you journey, over the next few weeks, to fill your body and soul with the gift of life itself.  

The promise of Christmas is honored by the sentiments of Thanksgiving and the essence of Life and Light is brought forth by its grace.

I Just Want To...(by Michael)

Our kids have developed a response that they have shared with one another.  It seems to be a response that begins at about age two and dissipates at around five.  Therefore Ava has abandoned the response (for the most part) while Henry and Ella are full force in the throws of it.

"I just want to" is often heard around our house.  They ask for things and receive the "no" response and instantly the "I just want to" flows seamlessly from their mouths, dressed lightly with the perfect amount of toddler whine.

There are times, however, when the "I just want to" response does not elicit a hidden eye roll from me or Lindsay.  These times are actually accompanied by some distress on our part.

Ella watches Ava and Henry.  She watches them closely.  She is a bright two-year old and she knows what she wants.  She is just now beginning to understand that her SMA prohibits her from doing many of the "things" Ava and Henry enjoy.  Nonetheless, when her two siblings are excited about playing some game, or cruising effortlessly down the stairs to the basement, or throwing themselves recklessly onto the couch in the name of childlike fun, Ella wants to join in.

She "just wants to".  It breaks our hearts every time.  I suppose the heartache that accompanies her plea to engage in the behaviors that she sees Ava and Henry enjoying prompts us to eagerly find ways to accommodate her...sometimes with success and other times without.

I took Ella to Target.  It was just me and her.  The whole way there she talked of wanting to ride in the "big cart"...you know the one...it has a place for kids to sit attached to the back (see the pic above).  She has never been able to or allowed to sit in the kid part of these carts...simply because she lacks the strength to hold herself up safely.  For her entire life she has watched as Ava and Henry, with absolutely no hesitations, go back and forth from enjoying the "big cart" ride to walking/running down the aisles.  Ella always was seated in the cart, wedged safely in the "old kid portion" of the cart.  She wasn't even able to have her legs dangle for she might tip suddenly.

The entire ride there I kept telling her that we would look for a "big cart" but might not find one (it was my secret hope we wouldn't find one so I wouldn't have to say "no" to her...again).  When we arrived there was one right there, just waiting for us.

"I just want to" she said.

I thought we might try it.

It worked.  She sat in the "big cart" with no problem whatsoever.

She's quite the kid, our Ella is.  All of our kids are...

The night before the "Target Trip" we were at a birthday party.  Henry decided to play a game with Ella...I've never seen the game they were playing but was awestruck at how he took her under his wing and brought her to the world of play despite her being confined to a wheelchair.  His ingenuity and compassion was tearfully evident.  Ella is a lucky little girl to have such a big brother as Henry.  I don't think I heard, "I just want to" once from her while at the party...both Henry and Ava made sure that she didn't have to sit idly by and watch, wish, or whine...

Enjoy the Henry and Ella "Wheelchair Fun" video...

Unchartered Territory...(by Michael)

I walked into Ella's room to get her from her nap.  Something that Lindsay and I do everyday.  There's a "ritual" to the whole process.  Walking into the room the stand-up fan is turned off, then one gets to the side of the bed and turns off her pulsoximeter.  As she lay on her bed patiently we proceed to "disconnect" her from the bipap machine.  She asks to "sit up" and we cradle our hand gently behind her neck, providing the necessary support, as we push her up and into the sitting position.  The cord that leads from the pulsoximeter to her big toe is taken off.  She's free from the constraints that SMA has placed upon her as she slumbers.  She sits in her bed and makes her request to charge (for those who don't know what her "charge" is; it is when Ella pinches [with her index finger and thumb] the skin in-between your index finger and thumb).

On this particular day when I went to get her from her nap and the ritual was complete up to the point of "charging" I sat on the bed with her...that's when it happened.  It was short-lived but took me by surprise.

The feeling I had was quite intense...

It was a feeling of being so utterly tired of her having SMA.  Her hands, fingers, feet, and toes are so small.  Her arms and shoulders are tiny.  The limitations placed upon her never seem to go away.  I felt bad for her.  I wished I could do something, anything, to take SMA away from her.  The depth of my parental love, protection, and self-sacrifice ran into unchartered territory. It brought me to a place where I have never been before. 

And then it happened again...as quickly as it came the feeling fled and was replaced...

I saw her for who she really is.  I saw into her eyes, her face, and her beauty.  I watched as her smile opened up her soul and the brilliance of her essence filled my heart.  I became amazed at the incredible progress she has made as of late...I found myself in awe to be her daddy. 

If you have kids...hold them close to you every day.  If you have no kids, hold those you love close to you everyday.  If you find yourself alone, hold yourself in the warmth of who you are.

Yes, SMA may place, without reservation, limitations on my little girl.  These are only physical limitations though.  She fights through them each and every day.  

And while SMA may claim what it can, it will never claim her. 

"Can I come back?"...(by Michael & Lindsay)

They stick together.
They play together.
They fight together.
They talk with one another.  About everything.

We were driving home from spending an evening at church when I came to a red light.  Ella took my attention from the road and asked me, "Where do I go when I die?"

My world focused on her face.  I asked her to repeat the question just to make sure I heard her correctly.  I had.

My response whizzed its way from my head to my mouth and before I knew it I was telling her that she'll be with God as He holds her close in His hug.  She thought for a moment.  Pulling her finger away from her mouth she returned her gaze to mine and asked, "Can I come back?".  We stared at each other for a moment.  I spoke.

"If you want to" I said.  The car behind me let out a friendly honk to let me know the light had changed.  Quickly Ava, Henry, and Ella began talking about heaven (as they often do) and began planning for all the wonderful things that will be there...waiting for them.  I drove replaying the conversation I had with Ella over and over in my head.

Those two questions:  "Where do I go when I die?" and "Can I come back?".  They struck something deep inside of me as my mind brought itself to wonder why they lurked in her head.  Why did my two year-old daughter who faces a terminal illness ask me those two pointed questions?

At first I thought the first question was more important to focus on than the second.  Amidst a discussion with Lindsay I now think otherwise.

Ella has changed.  There is something different about her.  She is bringing to our world an inspiring display of courage.  Raw courage.

The change has manifested itself in the incredible improvements she has made over the past few weeks.  She has stood with the parallel bars by herself, supported by her braces yet bearing her own weight.  She has walked with assistance the length of those bars (six feet).  She practices the motion of walking with our help outside of the parallel bars wearing just her AFO's and TLSO (no knee immobilizers).  She has rolled from side to side on a hard surface.  She lies in bed and brings her legs up in order to grab her toes; delighting in the childlike wonder of controlling her body.  She has even once rolled herself from being on her back to her side while sleeping! 

Her courage to attempt these feats and face the risk of injury and disappointment runs deep inside of her.  She does fail at many of her attempts yet she gets right back up and goes for it again with the expectation that she'll get it this time.  It's paying off as we are seeing a change in our Ella.  How long it will last; the reason behind it; how far it will go all remain to been seen.

The question, "Can I come back?" is important in relation to the question, "Where do I go when I die?" because it tells me that she's not ready to die...as inviting as being hugged by God is, I think she knows she isn't finished here on earth.