A Pathway...by Michael & Lindsay

We all know that life "has its bumps".  For Ella, that is a reality she lives with every single day.  We are so fortunate that so many people and several organizations have stepped forward to help our family.  We honestly wouldn't be where we are had it not been for the care, dedication, and pure kindness that has surrounded us. 

Ella is six years old.  She LOVES to play with her brother and sister, with her friends, and with her neighbors.  Of course, kids being kids, they run and jump and play all over the yard and the neighborhood. Ella does everything she can to keep up with them...and does a great job of it!

We have noticed that as she cruises around the front and back yard areas she is pretty good at changing her pathways, thereby not wearing muddy paths in either of those places. While this has always been the case, it is not so for the pathway she has forged allowing her to go back and forth between the front and back yards; the lawn in this area (which is on the side of the house) really only allows for one path for her because of its width.  This small area is being worn down and the grass is dying, leaving sloppy muddy spots where her chair can get stuck.  Of course, rainfall coupled with very poor drainage in that area only exacerbates the problem--and it promises to get worse.

Several organizations have tried to help but to no avail thus far.  So we have decided to tackle the problem on our own.

What we aim to do is create a structured path from the driveway to the playground in the back yard using rubber mulch. Rubber mulch lasts longer than wood mulch as it is guaranteed for 12 years.  It's cleaner and provides a smoother, more cushioned-based path for her to travel over. A stated before: without a structured pathway, the grassy area Ella uses to go from front to back (and vice-versa) will soon become a sloshy, muddy mess; eventually she won't be able to use that path since her power wheelchair would get stuck in the mud. 

Taking this all into consideration we have decided to reach out to whomever might be willing to help.  In general, we are looking for anybody who might give us a few tips on building a rubber mulch pathway (~45' long x 3' wide x 2" deep). We are also going to install a little extra drainage to that area (catch basins, some short underground piping, & a pop-up drain) to redirect the puddling water. We have done a lot of research.  We even talked with a man, by chance, who designed the Morton Arboretum's children's play area (he now works at Home Depot).  We are ready to move forward.  If there is anyone else out there who has experience in this type of work and can give us advice, tips, or tricks--it would be greatly appreciated.

Please feel free to email us at:  mcc2oreos@gmail.com if you or somebody you know, would have anything to share that would be useful to us as we embark on this project for Ella.

Here are 2 videos; the first is showing the bumpy path she's forged on the side of the house.  The second shows how nice of a ride she gets on the rubber mulch in the playground area. There is also a picture showing the area we plan on draining & renovating for her.

Videos and Pic

They Say...(by Michael)

They say, "Kids grow so quickly."  And that's true.

They say, "Time flies." And it does.
They say, "Life's not fair." And so be it.

They say, "Kids are resilient." And they do live up to that.

"Kids grow so quickly." 
Ella turned 6 years old today (June 10, 2016).  We celebrated early in the morning since she couldn't stand to wait anymore.  The five of us (and Sasa) sat around the kitchen table and helped Ella open her presents from Ava, Henry, and Mommy/Daddy.  Her eyes lit up with each present while her faced beamed with delight.  Following the "opening of the presents" the "playing with the presents" ensued.  Voices of three children playing filled the house (literally).  A perfect start to Ella's birthday.

"Time flies."  
Six years ago today Ella came into the world.  She was a VBAC2 baby (Ava & Henry were both C-sections...Ella was natural). After a long labor and an intense delivery she was here.  We had our third baby and were excited.  Before we left the hospital the doctors wanted to test for Down's Syndrome due to hypotonia and some other features.  We were taken aback yet knew we had to move forward.  Test results: negative.  Moving forward then, moving forward.  She failed to progress normally, not meeting milestones, and before we knew it we were testing for all kinds of things...all the while hoping that SMA was not the reason for the lack of progression.

I'd like to be able to say that "time flies" along with everybody else but cannot.  Since the dreaded diagnosis of SMA time has seemed to actually slow down.  The past 5½ years seems like 10 years (or more).  While our "regular" life continued it was overshadowed constantly by SMA.  Maybe "overshadowed" isn't the right word.  Maybe it would be best suited to use the word "invaded" instead.  While our "regular" life continued it was invaded by SMA.  I could could write forever on the life we've lived since SMA stormed into our lives, but alas...this is Ella's birthday...and she's more than SMA.

"Life's not fair."  
Our daughter, Ella, has been through more in her six years on earth than most kids could even imagine.  Working tirelessly on PT and OT despite the fact that SMA demands from her that she takes 1 step forward, two steps back.  Occasionally she outdoes the SMA and goes a step or two forward while she refuses SMA it's relentless demand.  

She's broken bones, lived with her body slowly degenerating and contorting, endured surgeries that keep her more immobilized than the SMA does, dealt with the fearsome accidental of pulling-out of her g-tube button as well as the periodic changing of the button.  Loss of gross and  fine motor skills which ultimately leads to frustration over the loss of independence.  Pain in areas of the body that seemingly have no origin---we know, however,  the culprit. She is often experiencing fear when someone new tries to move her as she knows that her body is not completely under her control and it is vulnerable.  

She has questioned God's intentions for allowing her to have SMA...often she doesn't understand the reasons offered.  She finds that she cannot participate in certain activities, which brings on anger, sadness, and jealousy.  

"Kids are resilient."  
Ella turned six years old today.  And while it has been a long road thus far she has shown everyone she knows what it means to be resilient.  

With every broken bone--she has quickly taught herself how to compensate despite being confined to a wheelchair with bulky, uncomfortable, and further-confining casts.  

When her body contorts she uses phrases like, "I'm twisted...can you fix me please?" accompanied by a giggle; she allows the lack of body control be a source of pleasure as she lets herself  flop down on the bed as gravity pulls her from sitting to leaving her as a twisted, laughing kid.  

With body casts on she maintains a smile that can melt your heart, an attitude that exemplifies the old saying, "Attitude is Everything"  and a grace about her that overcomes the obstacle as if the casts weren't even there. 

Her button is always subject to getting snagged on something while we are lifting her, easily pulling it right out; it has happened to both me and Lindsay and it is very scary due to the immediacy that is present in replacing it and the sudden pain it causes Ella; yet when it's all finished she truly forgives us for the mistake.  

She has grown in her ability to ask for what she needs and often comes up with incredible ideas on how to adapt something to fit her needs  (take that gross and fine motor skills!). 

Despite her fear of new people "handling" her she has expanded her circle of trusted people...not easy for a small child to acquiesce to.  

Although her understanding of the origins of SMA is limited or the unanswered question of why this happened to her still infiltrates her reasoning--she very seldom complains about the fact that she is afflicted with SMA. 

She is often satisfied to watch others having fun when she herself cannot participate...even going so far as to ask us to set things up for others to have fun while she watches...now what little kid does that?

Ella's birthday is today.  
She's a bright, happy child with much to offer the world.  She draws many to her in ways she herself isn't aware of.  Lindsay and I have the awesome opportunity to be her Mommy 7 daddy, to care for her, to raise her, and to be with her each and every day of her life.

Happy Birthday, Squishy!

Now she has to use two hands to show her age!

One happy kid!

Fun-loving Ella

Our Vizsla (by Lindsay)

Most of you who know us, know that our dog, Sasa (a Vizsla), is a very important member of our family.

I bought her from a breeder when I lived downtown Chicago with my sister, Anne.

Sasa will always be my first "baby"...she was with me when I dated Michael and then married him; she was with us through the births of our three incredible children; and she was with us when Ella was diagnosed with Spinal Muscular Atrophy.

She's still with us now.

She's been with us through the ups and downs of life, and has remained the most amazingly loyal, loving and playful dog that I ever could have imagined owning.

We always knew that we wanted to get another Vizsla puppy before Sasa's time with us ended. We wanted to have "overlap" time between the two dogs (and we've been told by many people, including Sasa's vet, that this would be beneficial not only for us, but also for Sasa and the new puppy). So our plan was to get a male Vizsla puppy next summer (2017). 

Sasa is almost 12 years old. While she still seems like a puppy in our eyes, she's started randomly falling over during the past month.

I took her to the vet last week (luckily we had a video of one of Sasa's "falling" episodes to show her) and after a few tests, the vet immediately recognized that Sasa has a heart condition. We don't know what the exact problem is (we could find out by doing many costly tests...we're choosing not to), but regardless of what it is, it's not something that can be fixed.

The vet told us that it will eventually lead to cardiac arrest. She's guessing that Sasa has anywhere from 6 to 12 months (give or take) before this happens.

We are heartbroken at this news. We can't imagine life without our Sasa.

We quickly realized that if we wait until next summer to get the new puppy, there's a good chance that Sasa might not still be with us.

But wait-lists for Vizslas are typically months long.

However, I decided to take a chance...

I called the "Vizsla Guru" (a well-known breeder near Rockford, Illinois) and he told me of a good friend of his in Wisconsin who has a new litter of Vizsla puppies and might have a few males still available. 

I was able to get in contact with the Wisconsin breeder and out of his litter of seven puppies born in May (six males and one female), he still has three males available for purchase! 

Michael and I knew what we needed to do...

We almost immediately sent him our deposit to guarantee us one of the puppies (available to come home in early July)!!!

We are so thankful that this is working out. We've been told that having an older dog around when you bring home a new puppy can help the puppy learn its rank in the house and can also help bring some youthfulness back to the older dog. And when Sasa's time with us does come to an end, we'll have our other dog that we love to help us through the grieving process.

Hopefully Sasa still has a lot of time left with us...she hasn't had a falling episode in over a week and she's still her loving, happy self :)

Here are some pictures of our Sasa as well as the puppies in the new litter:

When I first brought Sasa home (she was 8 months old)

One of our favorite Sasa pictures (taken by my mom, Barb Gibson)

Our "Old Lady"

(picture taken this past weekend by our neighbor/friend, Michael Minella) https://www.facebook.com/michaelminellaphotography/

The following are pictures of the puppies in the new litter (we don't yet know which puppy will be ours until we pick him out in person). The breeder will be emailing us photo updates every week until we pick up our puppy in July (the puppies are currently 4 weeks old).