Carving the Path...(by Michael)

The days wear on.  They often blend one into the other.  We've established a routine that currently works well.  We know that will change soon as the disease progresses.  We know that.

There seems to be two worlds in which we reside.  The worlds of raising children with and without special needs.  These two worlds often sing in harmony while clashing violently with each other.  They sometimes compliment one another and still, in the same breath, put the other down.  Each world fills our lives with demands, vying for our attention, our love, our time, and our strength.  Little, if any, of these resources are left behind...and what is left for us, we cling to with all we have.  We hang in there, if only by a thread on some days or by a rope on others, we hang in there.  It's our life.

As our children grow, we too, have grown.  A maturation has developed to deal with the conditions associated with the terminal illness that has befallen our daughter.  Those words are hard to say and even harder to write...terminal illness.

With the demands that confront us on a daily, nightly, and moment-by-moment basis we find ourselves seeking refuge in many different ways.  Often we seek distraction.  Places we can go, if only for a short time, to relieve us from what we know.

Distraction from SMA that looms in our household.  Distraction from the responsibility that pushes us out of bed several times a night.  Distraction from the stark realization, the knowing, the idea that each day--motor neurons in our little girl are slowly but surely dying off.  She fights it.  Every day...in every way; she fights it.

She fights it with open arms and a smile that can melt steel.  She fights it with a will, a determination, and a pride that elicits simple awe.  She fights it with humor, with her temper, and with her heart.  

She's growing.  She's getting heavier simply because she's growing.  Her proportions are beginning to become uneven.  Her strength...taxed more.  We can still pick her up and carry her; and we do so often.  Soon she'll begin potty training, attending preschool, and seeking her place in the world of socialization amongst her peers.  An interesting prospect to say the least.  We have much work to do on many levels.

The days do wear on.  We seek solace in each other; in distractions that temporarily take us away; in places that can sometimes be dark and lonely.  We find comfort in our family; our friends; people we've never met far and near; and the goodness of the world as it shows itself to us.  We find strength in our children as they walk the path with us...often times taking the lead and carving that path.

Ava's Promise...(by Michael)

There seems to be a shift in the air.  Something is going on; developing.  The awareness of what is really happening is decidedly coming to the forefront.  There is no stopping it.  There are no aversion tactics.  There is no way around it.

The other morning Lindsay and I listened to Ava sing to Ella.  Curled up on Ella's bed early in the morn, Ava sang a tune to Ella that reflects one of her deepest desires.  The words: simple.  The melody: pure.  The meaning: eternal.

"Goodbye SMA, bye, bye, bye SMA.  Goodbye SMA, bye, bye, bye SMA".

The exchanged glances that Lindsay and I shared were ones of "how cute is that?" coupled with "the time is coming for an explanation..."

Ella has been under the impression that her inability to walk, run, jump, or even stand is directly related to her age.  With her whole heart, as of recent, she believes that when she is older she will indeed do these things.  She is only now beginning to emerge from the sheltered shell she once lived in; and with eyes wide open she has started to realize that she already is older.

When she sees other children about her age she inquires whether or not they are "babies".  When she sees a baby, she confirms that it is, in fact, a baby.  She is beginning to compare herself to her same aged peers while out in public.  Not only comparing herself, but making the connection between what they can do and what she cannot.  Her face, oftentimes, is one of deep wonder, questioning, and the attempt to make sense out of what is going on with her self.

While carrying her to the car one morning she asked me if she would "walk when she is no longer a baby."  

I told her that, "She is isn't a baby anymore...that she's a big girl."  

"I am?"  she replied.

"Yes, you are."

"Will I walk then?" was the next words uttered from her mouth.

"When the doctors find a way to fix the SMA, then you can walk.  It's not your age, it's the SMA that makes you not walk." I replied.

"The SMA?" she repeated, "I don't like the SMA.

"Neither do I."  I said.

The hope that surrounds the idea that one day they will find treatments or a cure for this debilitating, awful disease that has claimed the lives of thousands of children and made life extremely difficult for countless others and their families, is a hope that seeks to fulfill the promise that Ava sings about.  The promise that one day we will indeed say, "Goodbye SMA".

Hang in there Ella.

In the News (by Lindsay)

All of a sudden, Ella has become Little Miss Popular...

Last month, she was asked to be the cover girl for a Lurie Children's Hospital publication called, "The Child's Doctor".  It is a magazine/booklet that comes out quarterly, and the Spring's issue is going to be about SMA, written by Ella's neurologist, Dr. Nancy Kuntz.  The publication is distributed to about 10,000 pediatricians, so we are very excited for information about SMA to be given to so many doctors!

Of course, when asked, we were thrilled to have Ella be on the cover (and also on the inside of the publication).  We went downtown to Lurie Children's for the photo shoot with Dr. Kuntz and had a great time!  And for fun, the photographer even took some pictures with Ava, Henry and me in it as well!

We're looking forward to receiving the publication once it comes out!

Shortly after the photo shoot from Lurie Children's, we were contacted by a woman in their PR department asking if we would be interested in having a local news source do a story on Ella.  The story would include information about SMA, Ella's experiences at Lurie Children's, and how we use her blog as a tool to share Ella's progress/status with friends and family.

This story will appear in the Naperville Sun, our town's local newspaper.  Yesterday I was interviewed over the phone by a reporter and she will be interviewing Michael over the phone later this week as well.

Finally, last week I was contacted by our Normal Moments volunteer, Erin, about a story that WGN wants to do on the Normal Moments organization in their TV segment called, "Living Healthy Chicago".  

For those of you who aren't familiar with Normal Moments, they are an incredible organization in the Chicago area that provides volunteers to families with children who have special needs.  They also help with other things such as finding business sponsors for families at Christmastime and throwing fundraisers to help families with needs for their homes.  

The Normal Moments volunteers pretty much do anything you need them to do.  Our volunteer, Erin, mostly helps with cleaning and caring for Ella when I have things to do around the house.  Erin and Ella share a very special bond.

Back to WGN...when Erin called me last week and said that WGN wants to do a story on Normal Moments, she told me that they would like to feature a family as an example and wondered if we would like to be that family!  Without much hesitation, we said yes :)  

So tomorrow (Wednesday), the WGN crew will be coming to our house, filming interviews with Erin and our family, and showing a little bit about how Erin helps us.  We're a little nervous, but also so excited to be spreading more SMA awareness!

Right now, we don't know exactly when the any of these stories will be published/broadcasted, but we will be sure to let you know when we find out!

Sometimes...(by Michael)

Sometimes.

Sometimes I cannot handle looking at what SMA does to our daughter.

Sometimes I grow angry at what lies in front of me.

Sometimes I want to hide away, never to see the light of day.

Sometimes I feel helpless.

Sometimes I dread getting up in the morning to face another day.

Sometimes I sit and think of nothing.

Sometimes I wonder how it will all end.

Sometimes I reach for things too far out of my reach.

Sometimes I grow jealous of the lives of others.

Sometimes I pretend that my life simply never existed.

Sometimes I desire to run through a field; never to look back.

Sometimes I imagine the end of the world.

Sometimes I pray for an answer.

Sometimes I shake my fists at the Lord.

Sometimes I sit in quiet contemplation.

Sometimes I laugh at the irony of life.

Sometimes I remember what dreams I once held.

Sometimes I cry for no apparent reason.

Sometimes I joke with stinging sarcasm.

Sometimes I hurt the ones closest to me.

Sometimes I empower myself with myself.

Sometimes I decide that I simply know best.

Sometimes I think that the waking hours are a dream.

Sometimes I wish sleep never ended.

Sometimes I stroll through our soundless house.

Sometimes I search for the demons in myself.

Sometimes I practice what I'm going to say.

Sometimes I long for my mother's arms.

Sometimes I threaten the thoughts that barrage me.

Sometimes I quell the beast that in me resides.

Sometimes I search for an answer forthcoming.

Sometimes I seek the truth.

Sometimes I travel to imaginary places.

Sometimes I step into other people's shoes.

Sometimes I jump to insane conclusions.

Sometimes I beg for understanding.

Sometimes I relish in the life that I have.

Sometimes I relinquish the struggle for power.

Sometimes I tell a lie without thinking.

Sometimes I call when there's nobody there.

Sometimes I write things no one will read.

Sometimes I draw on my experience thus far.

Sometimes I traverse a road best not traveled.

Sometimes I look to the young for advice.

Sometimes I show the best I can be.

Sometimes I believe there is not too much more.

Sometimes I take more than I can handle.

Sometimes I sit and let others just do.

Sometimes I try to make some sense.

Sometimes I fail to get it right.

Sometimes I push the limits of others.

Sometimes I pull on the strings of my heart.

Sometimes I stand for what I know is right.

Sometimes I shake off the dust from the road.

Sometimes I love.

Sometimes I hate.

Sometimes I care.

Sometimes I don't.

All the while...

I am happy to be.

Circling Between...(by Michael)

The delights of a grandchild.
The thrills of a grandpa.
The love that circles between.

Our kids' eyes are filled with happiness each time they spend time with their grandparents.  They embrace them with a love that is unsurpassed.  They keep their spirits high, their arms open, and their hearts filled with joy over who they are as people...just as grandparents do.

All three of our kids adore their extended family.  The newest addition, Ella's cousin Caroline, is fast learning the pleasures of family as well!

I'll let the pictures tell the story...