They say, "Kids grow so quickly." And that's true.
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.
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.
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.
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.
"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!
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| Now she has to use two hands to show her age! |
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| One happy kid! |
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| Fun-loving Ella |
