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When God Made This One...(by Michael)

I normally don't post these thoughts for a variety of reasons, yet this one I felt compelled to do so...don't ask me why.


A deep pit in my stomach made itself known to me this morning as I was with Ella.  I had taken her to Aqua Therapy then to see my Dad in his nursing home.  Since I was driving my car I didn't have her power wheelchair and I forgot to bring her manual chair.  That was fine...I didn't mind carrying her.


As we waited for the elevator after our visit with my Dad I was able to take a good long look at Ella.  I don't think she knew I was watching her so intently, or maybe she did and didn't mind, but she never once looked at me for a full minute.  She kept her gaze on the closed doors of the elevator waiting patiently for its arrival.

My eyes sank deep into her face, watching as she silently allowed me to.  I noticed something I hadn't really taken notice of in a long time, probably since the months leading up to her diagnosis last summer.  Her neck.  If you look closely at her neck you can see her little muscles quivering.  It's that sight that turned my stomach into a ball of mush.

My eyes grew heavy as the thoughts of SMA filled my body almost as it fills hers.  My brow furrowed as the quick, methodical contemplations of what having a terminal illness means for my daughter and my own neck grew tight.  My eyes wandered from her neck and took sight of her light, fluffy hair.  Every hair on her head is accounted for by God.  I wondered why she has SMA.  I wondered about what will happen with my Ella.

While this minute was progressing I found myself holding her tighter than I usually do, most likely an unconscious response to the pit in my stomach that had taken over my entire body.  At one point I must have squeezed just a bit past her comfort level because her head turned to me allowing our eyes to meet.

My body relaxed.

Her beautiful brown eyes took mine.  She knew I was struggling with something becasue she lifted her hand in the "praying mantis" way she does when she is trying to get her hands above her shoulders with no support, and touched my face.  Her mouth opened and her smile filled her face as light careened off her cheeks.  When God made this one he certainly placed a loving spirit within.

The elevator chimed its arrival and our gaze was broken by the surroundings we found ourselves a part of.  The moment had passed yet the aftertaste of it on the ride home lingered in the car.  A taste of SMA when allowed to envelope your soul is bitter and rancid; it clings mightily to your body, invading your ability to recognize your own being.  It is a disease that strikes the young and has little mercy.  It is a disease that strikes the family in a place where many diseases never dare to go.  It has its power and knows its own destructive force.  If left unchecked, it can and will drape itself unceasingly over your life, taking pieces of it as it leaves parts of your soul scattered in despair. 

We fight this everyday.  We arm ourselves with the shields that are designed to protect us from such moments.  The moments, however, are necessary as they provide a reality check that must be embraced.  To know your enemy deeply and intimately is to defeat your enemy.  As painful as that one minute was it brought me to a place where I can know SMA and its horrors on a level that defies logic. 

I know I have been in that place before and I know I'll be there again.  This was, however, the very first time I was consoled by the very one who harbors the SMA. 

New Mama Bracelets Necklaces (by Lindsay)

Today I finished three new Mama Bracelets necklace designs and they are now available for personalization and purchase at www.mamabracelets.com (under "Hand-Stamped Jewelry").


Here's a sneak peak...

Four-Sided Swivel Pendant Necklace

Artisan Disc Necklace

"LOVE" Necklace

Little Did I Know...(by Michael)

The Home with a Heart 

I spent 8+ years with an amazing group of people working with children, ages 5-12.


It's where I found out that I wanted to spend my life working with children. 


It's where I found lifelong friends. 

It's Hephzibah Children's Association  

The Home with a Heart

Hephzibah is a residence and foster home, coupled with an incredible daycare program.


I was part of the daycare program.  I started out as a staff member, became a supervisor, and eventually was a coordinator for a short time.  I worked with hundreds of kids and scores of staff members.


I visited them this summer while they were at their summer program location...a nine-week stint that occurs every summer; housing hundreds of children from Oak Park in one location--Monday through Friday from 7:00 am - 6:00pm.  A program that is run so well it has gained notoriety and respect in the community.  I was once part of that program.  It felt wonderful to step back into my old stomping ground--almost as if I had never left.  


This time my family...Lindsay, Ava, Henry, and Ella were with me.  I brought them to Summer Hephzibah so the kids and staff could meet them--because on August 2nd, Summer Hephzibah is sponsoring a "Walk for Ella".  


I'm speechless.


A handful of people that I worked with who are still there (as well as former Hephzibah kids that I once took care of who are now staff members) will be joining kids, families, and staff members that I've never met and walking for my daughter.  Walking to help show their love and concern for my family.  


Little did I know 20 years ago, when I sat in the Daycare Director's office interviewing for my first real job out of college, that I would be writing a blog about how this amazing organization has been, and continues to be, an important part of my life.


Little did I know that the people I met during that first summer I worked there, as well as those I met throughout the following school years and summers, would become like family to me and to my family.


Little did I know that kids, who weren't even born when I first started working there, would be walking proud for a daughter I never knew I would have.


Little did I know.

Mama Bracelets Re-opens (July, 2012)

Mama Bracelets is now open for business!

Our website is open and ready for your orders!

Also, we will be adding three new items to our inventory...details soon!!

Our current inventory includes the following items:

 

Please visit us at:

www.mamabracelets.com

Identity (by Lindsay)

I feel like I've lost my identity.  I've lost the real "me".


Since Ella was diagnosed (almost a year ago), it seems that I have become someone other than Lindsay.  I have become simply "a mother of a child with SMA."


It's hard to compete with that. 


After all, being a mother of a child with SMA takes up a lot of time, energy, and strength.  And with all of that, I feel like I've lost myself.  I've forgotten who I am as a person.  Most conversations revolve around SMA and Ella and how she's doing and how we're doing.  I've been defined by this awful disease and had no control over it.  


So I tried to take some control.  Which led to weigh loss.  And then I created a new definition for myself...a person who is thin.  And I liked it.  At first.  But then obviously I started to lose control and spiraled into a full blown eating disorder.


Another new identity.  Which I'd rather not have.  So now in addition to SMA, the conversations are also about this new disease...Ed.


What Michael and I are working on now, is bringing some of our old interests back to life.  We're going out on dates again, which has been amazing.  We've gotten to the point where we feel comfortable leaving Ella with a few others who are familiar with her care, so we are able to get out for a couple hours at a time.


We realize that we need some individual time as well.  I'm hoping to start walking again, as that used to be an activity that I looked forward to every evening.  As soon as I get the "ok" from my dietitian, I'll resume my daily strolls.


I am also in the process of finding an outside therapist to help me with my eating disorder struggles, as I still have a ways to go.  It's hard to let go of the one coping mechanism that provided such a distraction from SMA.  I'm hoping that the therapy sessions will also help me to learn new coping skills.    


The bottom line is, I need to find the old me.  I know she's in there somewhere.  


I know a big part of me has changed since Ella's diagnosis.  I've become tougher.  I don't have as much patience.  I have a new appreciation for things in life.  And there is a new darker side to me that didn't exist before (or maybe it did, but it never reached the surface until recently).


Yes, I understand that SMA is a huge part of our life and always will be.  But it's not our entire life.  It can't be.  


I'm still Lindsay.


And I need to reach in and pull out some of those qualities that make me who I am.  Because I miss her.  


I just want to be me.

At That Moment...(by Michael)

She looks absolutely incredible...doesn't she?


If we didn't know any better I'm sure we wouldn't be thinking that this beautiful child has a life threatening disease that robs her of most movements many of us take for granted.


If we didn't know any better I'm sure we wouldn't be thinking how grand she looks as a standing person.


Ella simply cannot stand by herself.  Seeing her in this picture is a brief moment in time that I could stare at forever.

She looks tall and much older in this picture than in any other photo of her.  For starters, she is in the standing position; in addition, she is getting older.

The picture above was taken on a hot summer morning and will undoubtedly become one of my favorite pictures of me and my youngest daughter. 

The day after the photo above was taken I was holding Ella in church.  She was in a loving mood; she was in my arms facing me as we sang hymnals and at one point she wrapped her little arms around my neck and nuzzled her face into my neck saying, "Daddy."

At that moment I prayed that SMA would never take away her ability to hug...

Made for These Three...(by Michael)

Ava, Ella, and Henry

Being able to drive all three kids down the street to the Morton Arboretum for a one hour excursion is exactly what our family needs to be able to do.  We have three very active children, all who have curiosities welling up inside of them...ready to burst forth at any and every moment.

For Ava her physical and intellectual endeavors bring her to different explorations each day.  She's a creative person with an asrtistic flare coupled nicely with the desire to explore how her body moves in so many arenas; dancing, swinging, climbing, running, biking, etc. 

Having her visit the Arboretum fills so many needs for Ava.  She absolutely loves flowers (as she so elequently says she'll be a horticulturalist when she grows up) and the set up of the Arboretum allows her not only to appreciate the beauty within but also exercise her physical self...

Ava rock climbing

 

Henry makes a living out of energy.  He thrills at the prospect of playgrounds, walks, runs, playing soccer (which we just signed him up for--thank you 'Castin' for Cookies'!) while at the same time gets enjoyment out of figuring things out.

Bringing Henry to the Arboretum offers him the chance to explore his environment in so many ways.  He knows the place like the back of his hand and thoruoghly enjoys his surroundings while there.  He is so happy when we are there.

Henry as a serious explorer



Henry after his rock climb



Ella.  Although confined to a wheelchair during most of her waking hours she still eagerly exhibits the expected traits of a person her age (two years old).  She is inquisitive, funny, outgoing, and loves to move as well as change her mind about where she'd like to be and what she'd like to be doing.

The Arboretum is designed in such a way that she can explore carefree.  She motors around the place and seeks new opportunities to gather information into that brain of hers.  She delights in the ramps, the turns, the foilage, the bridges, and the atmosphere that is The Morton Arboretum.



Ella gathering it all in



Thanks to a group of Elmhurst Moms and one person in particular who we affectionally call "Santa" we are able to visit the Arboretum as often as we like for the next year-and-a-half...anytime.  Thank you all so very much...having our kids being able to get out and enjoy not only the Arboretum but their family as well is priceless to us.

Video of Ella Cruising

"Are We There Yet?"...(by Michael)

We weren't going to go.

There's too much stuff...too many machines...too many responsibilities.

We changed our minds several times.

Before the summer began, however, we decided that if we let SMA stop us from visiting family at their lake house on Lake Chautauqua in New York then we may never allow ourselves to enjoy life's pleasures because of SMA.  

We went.

We packed up Ava, Henry, and Ella.  We filled the Odyssey with clothes, traveling "toys", Ella's 311 lb. power wheelchair, her various machines, her day-to-day supplies and headed east.  A road trip like none other any of us had ever experienced.

With Ella's pulsoximeter (this measures her heart rate and oxygen levels) attached to her big toe, she rode like a champ for the 8+ hours to the lake.  Ava and Henry held their own as well.  Excited and delighted at the prospect of spending time with Gramma & Grandpa, Auntie Annie and Uncle Noah, Auntie Sarah & Uncle Brad, & cousins Connor and Johnny, the three of them asked us the infamous question uttered by all traveling children, "Are we there yet?"26 times!

It wasn't easy yet it was possible to travel with SMA. It was a victory over the battle that SMA continues to wage at us--the battle of it trying to take our lives away at every moment.  

The disease threw some curve balls at us; the threat of lake water infecting Ella's g-tube site; the vomiting in the car; the heat causing her to work extra hard to keep cool and maintain head control; a long drive that keeps her diaphragm crumpled up for long periods of time; and so on...  

Lindsay and I did the best we could against everything that SMA hurled at us.  We had plenty of protection for her g-tube site; we knew how to handle the vomiting; we kept her cool and rested throughout the day; we stopped for driving breaks and had her car seat adjusted to maximize positioning; and so on...

We also had family.  People who enjoyed being with us; who enjoyed taking our kids into a new world, one they had never seen before...the world filled with the charming essence of a summer lake house and all it has to offer.  

Yes, traveling with three kids under five with one of them having special needs was extremely difficult...yet we are glad we made the trip for so many different reasons...

Auntie Annie & Ella

Auntie Sarah & Henry

Ava

Ava & Grandpa fishing off the dock

A Chord in the Symphony...(by Michael)

Ella & Ava waiting for Mommy to come home...

Lindsay has been officially discharged from Linden Oaks...

I've been Mr. Mom for the past 4 weeks.  I've walked a mile (or a month) in Lindsay's shoes.  I've seen a side of SMA that I knew existed yet it eluded me in its full force.  No longer does it elude...it has been thrust right in front of me and there is no way around it...only through it must I go...we must go.

Taking care of Ella day in and day out has become a central part of me these past weeks.  The more time I spent doing it the more immersed I became in the world that is SMA.  Yes, I had been part of this dismal world since her diagnosis, but these past weeks have brought something that is somewhat indescribable; something different about how I feel about her, it, and everything.

My moments were filled with keeping track of three children.  I anticipated Ella's needs as well as those of Ava and Henry.  SMA presents physical and emotional challenges for both Ella and me; and our entire family.  Every step of the way I had to be aware of the surroundings, the atmosphere.  I had to find ways to help her be comfortable and independent.  Between the g-tube feedings, diaper changes, playtime, nap time, meals, laundry, cleaning, personal things, and spending time with Lindsay my days would whiz by in a flash and I can only catch up to myself in a heap of tiredness and exhaustion; an exhaustion that feels abnormal.  I welcomed the sleep as it came during the night.  I have learned to wake myself up in order to turn Ella, or pick Henry up off the hall floor and get him back into his bed (he's been doing that lately?!), or stop Ella's overnight feed and clean her feeding supplies. These overnight responsibilities only take moments.  Thankfully Lindsay is home overnight to help with this part as we take turns.   

The aspect of SMA that I have now experienced is the constant fight it presents.  As much as one does to battle the disease, it keeps punching back, robbing Ella of her body; taking away so much so quickly.  Spending almost every moment with her; caring for her, feeding her, toileting her, bathing her, placing her in bed on her machines, playing with her, explaining new things to her, doing exercises with her, transporting her, taking her to therapy, disciplining her, and loving her is the greatest gift I have ever been given.  

Watching SMA relentlessly do its dirty work has hit a chord within my soul that has been silent for many years.  A chord that rings loud and clear for strength and courage to come to the surface.  A chord that plays the melody of seeking out God to carry us through.  A chord that is clearly a part of a bigger song than the song of my own life...for the song of my life is simply a part of a greater symphony.  

As SMA takes hold of her muscles and as I watch despite my efforts to protect her from it, the chord of strength and courage is the one I know I must listen to...I know it rings loud and clear yet right now I can only hear it faintly in the distance of my mind. It may seem like an easy task to open up and let the chord ring loudly--yet through the influx of all that encompasses SMA and its terrible agenda it has proven to be more difficult---especially now that I am witness to all of it.  

I know Lindsay understands the indescribable aspect of what I speak of as do many others in their own ways.  I can only pray that God plays the chord for me often...so that I might hear it more clearly.  

I must trust He will.