A three-year-old with SMA Type 2.
She can sit. She can move her arms and legs.
She cannot walk. Her range of motion in her shoulders and hands are both compromised.
She, does, however, know exactly what she wants. And often she cannot get it herself.
She wants to sit on the couch with Ava and Henry. We put her there.
Moments later, she wants to sit on the floor with a specific toy. We oblige.
Still moments later, she wants to sit on the chair with Sasa...we place her there.
She wants us to carry her around, sit on our laps, go outside.
She doesn't want to sit in her wheelchair. I don't blame her.
She's three and she wants to explore her world. The frustration she feels is evidenced by the screaming and crying we have been going through lately. Her frustration becomes ours. If we say "no" to a request, for whatever reason, the tantrum begins. She flails herself down, or throws her head back while screaming at the top of her lungs (which is probably good for her respiratory system!). Of course, wherever she ends up in the the tantrum in terms of her positioning, she cannot get out of it. We help.
I sat her down on my lap just before bedtime...just her and me. I asked her why she has been crying and screaming the past few weeks...she replied, "Why am I?". I asked her to tell me.
She placed her finger in her mouth as her gaze drifted away from my face and said softly, "Because I want stuff."
"Of course you do", I replied, "and sometimes we will say 'no' and sometimes we'll say 'yes'"
She didn't look at me still. She rested her head on my shoulder. Silence. A tighter hold.
I know she is coming to some sort of terms with her SMA.
She can sit. She can move her arms and legs.
She cannot walk. Her range of motion in her shoulders and hands are both compromised.
She, does, however, know exactly what she wants. And often she cannot get it herself.
She wants to sit on the couch with Ava and Henry. We put her there.
Moments later, she wants to sit on the floor with a specific toy. We oblige.
Still moments later, she wants to sit on the chair with Sasa...we place her there.
She wants us to carry her around, sit on our laps, go outside.
She doesn't want to sit in her wheelchair. I don't blame her.
She's three and she wants to explore her world. The frustration she feels is evidenced by the screaming and crying we have been going through lately. Her frustration becomes ours. If we say "no" to a request, for whatever reason, the tantrum begins. She flails herself down, or throws her head back while screaming at the top of her lungs (which is probably good for her respiratory system!). Of course, wherever she ends up in the the tantrum in terms of her positioning, she cannot get out of it. We help.
I sat her down on my lap just before bedtime...just her and me. I asked her why she has been crying and screaming the past few weeks...she replied, "Why am I?". I asked her to tell me.
She placed her finger in her mouth as her gaze drifted away from my face and said softly, "Because I want stuff."
"Of course you do", I replied, "and sometimes we will say 'no' and sometimes we'll say 'yes'"
She didn't look at me still. She rested her head on my shoulder. Silence. A tighter hold.
I know she is coming to some sort of terms with her SMA.
She made a comment to Henry earlier when he asked about her power chair. It was a response that came fluently from her mouth, clear as a bell.
"I have my pink chair because I can't walk."
I cannot imagine not being able to move myself from one activity to another at will. I cannot fathom the frustration she must feel watching her brother and sister do many of the things she simply cannot. I struggle to comprehend the strength and resilience, bravery and fortitude, she carries with her each and every day.
August is SMA Awareness Month. A time when the SMA Community reaches out to the world to help people understand this disease. A time when the same community looks at one another and just knows.
"I have my pink chair because I can't walk."
I cannot imagine not being able to move myself from one activity to another at will. I cannot fathom the frustration she must feel watching her brother and sister do many of the things she simply cannot. I struggle to comprehend the strength and resilience, bravery and fortitude, she carries with her each and every day.
August is SMA Awareness Month. A time when the SMA Community reaches out to the world to help people understand this disease. A time when the same community looks at one another and just knows.
The awareness of this disease, for the families living with SMA, is an awareness that is forever with us...
