“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

Here Comes the Sun…

It’s not unusual at all that a classic Beatles song would show up on a classic rock station in the car.  And I could write it off as mere coincidence.  But, there was my Dad this afternoon.  In the car, with the sun shining.  Reminding me…

“Here Comes The Sun”

Here comes the sun, here comes the sun
And I say it’s all rightLittle darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

Here comes the sun, here comes the sun
And I say it’s all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

Here comes the sun, here comes the sun
And I say it’s all right

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

Here comes the sun, here comes the sun
And I say it’s all right
Here comes the sun, here comes the sun
It’s all right, it’s all right

Dad never worried much.  And that had its down sides – I’m not going to lie.  But there was this calm about him that I was able to appreciate more as an adult.  I would call him all spun around, and somehow without belittling what I was worried about, he was able to help me take a few deep breaths.

Our problems here are real.  They are ever-present.  They can captivate, and get a downright choke-hold if we let them.  The worries are real.  The concerns about the future.  About mobility.  The concerns about the present.  About pain.  About fatigue.  About swelling.  And looming surgery.  The long-term effects of an AVM that seems to be affecting foot size, knocking a growing girl off-sides.  The concerns about the uncertain make it hard sometimes for me to find the sun.

There are normal “issues” too.  Ones we don’t write too much about here.  Bumps in the preteen world.  Learning as we go.  Along together.  Grateful for what, and who, we have to work with in this house.

Yesterday it was dark.  Really, really dark.  My gut drew me to the cemetery, where I hadn’t been for a while due to the snow.  And as I walked up the hill I saw the white piece of granite.  I think I knew it was going to be there.  And simultaneously I was glad and sad I was alone.  I cried like I haven’t cried in quite some time.  There is something about the reality of loss etched in stone.  The permanence strikes in a whole new way – and its like being kicked in the teeth all over again.

There's a certain finality of reality etched in stone...
There’s a certain finality of reality etched in stone…

I sat in the car too shaken to drive.  And I called my husband, and then I called Alan.  Alan is one of Dad’s Marines who has stepped into my life in such a huge way over the past year.  We have yet to meet, but we have spent hours on the phone.  He has laughed and cried with me.  He has told me stories of things, and people I needed to know.   He sent me a book a few months ago called “90 Minutes in Heaven” and simply wrote, “Read this.”  I haven’t read a book in quite some time, but I did as I was told… and I was so grateful.  My Dad merited a Purple Heart during his service in Vietnam, but technicalities being as they are, it won’t be awarded.  Alan’s efforts on Dad’s behalf over this last year and a half were Herculean.  Marines never leave a brother behind.  So, as I viewed the government issued headstone, without the Purple Heart I had envisioned, and fought for, it stung a little extra.  But just when I was about to crumble these two birds flew in low and close.  There was a peace about them as they flew past into the park.  I understood.  It’s about way more than the awards.  It’s about the love.  And the peace.  And the lessons learned.  And the heart and eyes open for growth.  And “Uncle” Alan made me text him when I got home.  Another testament to his love for his “brother” extending right to me.

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This morning we all made it to church.  It hasn’t been an easy feat these last few months.  We three entered Castleton Hill Moravian, and I was struck by the sense of warm familiarity.  Next Sunday, Easter Sunday, will mark two years of membership for us.  Never did I expect to leave my home church.  Never will I quite get over that loss.  But, I am amazed, impressed, and inspired by the way my husband and daughter have become motivated members of our new church.  Gratitude.  Palm Sunday, a day of ‘Hosanna’ and celebration, foreshadowing the lowest days, leading us to Easter Sunday next week, and the promise of the Resurrection.

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The winter was too much.  In so many more ways than the relentless weather.  The worry.  The heavy hearts.  I missed Valentine’s Day, and St. Patrick’s Day, and never took the eggs out for Easter.  I didn’t realize how very much I needed the sun- literally and figuratively.

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Today Meghan swam.  Another CYO meet.  She blew my mind.  Again.  I can not for the life of me get over her stamina in the water.  It’s her “happy place”  and she’s most terrified of her upcoming surgery because of the time she will need to be away from the pool.

Her team loses every meet.  But the friendships they form, and the positive attitude can not be traded for high scores.  She became a swimmer because this team took her in when she had never swam competitively.

The 25 fly… (red cap)

The first leg of the freestyle relay.

We had friends spontaneously show up to cheer her on today.  Perhaps they sensed the lowest lows…  We spoke of summer, and gathering in the yard – just because.

We drove home with the sun warming the car.  The temperature read 50 degrees on the dash-board.

This week we will wait for the results of the blood drawn Saturday.  This week will be just 4 days as Easter Vacation approaches.

“Here comes the sun… and I say It’s all right…”