“There’s nothing wrong with THAT girl…”

To the Young Couple on the Bus this Morning,

You should know that I heard you.  I heard what you said as you glared at my daughter.  I saw you shake your heads in disgust and say, “There’s nothing wrong with that girl, I saw her walking at the hotel last night.”  You seemed proud of yourselves, like you had “found us out.”  Maybe that’s why you weren’t so quiet.  Maybe you wanted the others to hear, and to look at us in disgust as well, while the bus took 4 extra minutes to load my daughter on the wheelchair ramp.

I thought about what you said on and off through the day, and that alone made me mad.  The fact that I even gave you a second thought was so much more than you deserved.

Then we caught the same bus home, and I really struggled to hold my tongue as you went at it again.

But, on the way home, I was less interested in you, and much more concerned for my daughter.  She wasn’t well, again.  And in some ways we are used to it, but it’s never any easier to see.  As magical as it is here, it doesn’t change our reality.

Our reality, the reality of daily struggle with an invisible illness, is with us all the time.  And even though my daughter CAN walk, she is not physically capable of the walking required to navigate the parks.  Maybe its the 6 knee surgeries.  Maybe its the after effects of the thyroidectomy.  Maybe its the low immune subclasses, or the severe GI issues.  She tires easily.  And today, because it’s day three, she is already worn out.  And even with the help of a wheelchair, she needed us to cancel our dinner reservation and get her back to the hotel to rest.

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So, yes.  At the advice of her doctors, and the agreement of her parents, because she NEEDS a break from her life, and EVERY protection to help her feel well, she uses a wheelchair through most of the day.  And every day before we leave the hotel room we say a prayer for all those who HAVE to be in a wheelchair all the time.  We take a moment to pray for their strength and health.

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You aren’t the only ones.  There are plenty of others who look at my beautiful girl, and think that this is some type of ploy.  Which would make us pretty sick people.  Because if you really want to feel queasy, push your child around in a wheelchair.  Go ahead.  Try it for a week.  We’d rather she walk.  She’d rather walk.  So sometimes we let her try.  With advil, and about 3/4 mile round trip.  There is ice for the knee, and a shoulder to rub.  The body behaves like one 40 years older.  But, she pushes.  To keep her independence.  To feel normal.

The next time you wait the extra 4 minutes for the bus to load, don’t judge.  Don’t figure you know the who, or what or why, about the person in that wheelchair.  Don’t pity them.  Don’t feel badly for them.  Just be respectful, and assume they fight a battle you know nothing about.

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If you want to know more about them, ask.  And if you don’t – just walk right on by.  And cherish your mobility.

You just never know.

Sincerely,

The Mom of that Child You Know Nothing About

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