The Little 5-Year-Old Girl

For those who have only met Veronica through pictures, the extent of her disability may not be evident. You cannot tell from her pictures that she is not able to sit, stand, hold her head up or even move her body parts by herself. It is not evident that she breathes with her belly, cannot swallow, or has to eat through a tube in her stomach.

I thought I would give a little glimpse into what SMA is like for us. Maybe then people will understand why I have been so persistent to get votes in the Chase Community Giving campaign presently on Facebook.

Yesterday we went to Disney on Ice. We love that we have been able to expose Veronica to so many fun activities, but as is always the case, I find myself watching regular people and wondering “what if.” Here is a synopsis of what it takes for us to go to an event and what I imagine it takes for a “regular” little 5-year-old girl.

The little 5-year-old girl wakes up in the morning, goes to the bathroom, eats breakfast, gets herself dressed (with a little help from her mom), brushes her teeth and dances around ready to leave for the ice show.
Veronica wakes up in the morning, has her bipap machine turned off, mask removed from her face, has her food pump turned off, gets medication, is suctioned and then moved to the table to get ready for the day. Her pulse oximeter is moved to a different finger, her diaper is changed and her mom listens to her lungs with a stethoscope. Her mom brushes her teeth because she is not able to move her hand to her mouth and the toothpaste and saliva is removed with a suction machine because she is not able to swallow. She then gets beat on her chest with a percusser to loosen any junk in her lungs and begins her (at least) twice daily regimen of coughing with a special machine. The machine forces air into her lungs and sucks air out to simulate a cough because she is not able to do that on her own. Suctioning again removes the saliva she is not able to swallow. This procedure is repeated several times.
Next, Veronica’s legs, feet, arms and hands are stretched and moved because they get stiff and contracted from not being able to move them on her own. She is dressed by her mom and is put into her special orthotic shoes to help keep her feet straight. She is suctioned once again, picked up and carried to the living room, while her mom dances her around ready to leave for the ice show.

The little 5-year-old girl runs out to the family car, climbs in, and is helped buckled in by her mom. She is so excited she is talking a mile a minute, arms flailing about in anticipation of seeing Disney characters skating.
Veronica is placed into her special wheelchair, rolled out to the pseudo ambulance also known as the family car, suctioned, placed into the seat and strapped into the specialized seat belt that allows her to lie flat. If she can’t lie flat she can choke on her own secretions. She is placed on her side to help said secretions drain out, has her bipap mask put on, machine turned on, hooked up to pulse ox, hooked up to feeding pump and is smiling ear-to-ear in anticipation of seeing Disney characters skating.

When she gets to the ice show the little 5-year-old girl jumps out of the car, puts on her fairy wings and dances around waiting to go inside.
When Veronica gets to the ice show her mom takes out her specialized wheelchair, unhooks the feeding pump and puts it on the chair, unhooks the pulse ox and puts it on the chair, unhooks Veronica from bipap, suctions her and places her into the chair, puts the suction machine onto the chair, hooks everything else back up, makes sure they have everything they need and that the car is not too far away in the event of an emergency, and dances the wheelchair around in circles as she is waiting to go inside.

The little 5-year-old girl and Veronica arrive at the ice show at the same time. People stare at the little girl because she looks so cute in her fairy wings. People stare at Veronica because she too is a little 5-year-old girl, but is not dancing around in fairy wings. Some call her a baby because she has to lie down in her chair. Kids ask their parents what is wrong with her. Parents shush their kids and tell them not to stare. There is nothing wrong with Veronica’s cognitive abilities so she is fully aware of people’s reactions and the things they say. As is always the case, Veronica takes it all in stride and fully enjoys her surroundings, saying “hi” to anyone who makes eye contact and smiling and talking at all the excitement.

The little 5-year-old girl and Veronica each go to their respective seats to be entertained and thrilled by skating Disney characters. The show starts and the first segment is Cars. As they are racing around the ice rink Veronica’s mom can’t help but think how much Veronica’s friend Logan would have loved the show. But he is not at the show with us because he lost his battle with SMA this past May.

This is our reality. This is what we live every day. Long ago I gave up the dream of Veronica being a “regular” 5-year-old little girl. Instead of fairy wings, she wears angel wings, and was sent here to teach everyone who knows her what life and love are really all about. That is where my passion comes from. That is why this voting campaign is so important. It might not happen in Veronica’s lifetime, but if one child can be cured at some point, it will all be worth it.

Please go to right now and vote. Do it for every 5-year-old little girl in fairy wings that you know.