This is for my children, who I probably don't sing to enough, don't read to enough, encourage to run enough, don't hug enough. My list extends into eternities. This is for one of them who is having a particularly hard time with bullies. Maybe this is for me as well. I don't know how to make it better. Kids don't come with letters and instructions.
I do know, I love you (both) ABSOLUTELY, unconditionally and will always support your right to have the space to grow and learn and muck up. Parents didn't just arrive at birth at being the bigger person, the better person, composed, accomplished and perfect. Side note: I'm unabashed when I say I still have not arrived in the way you think I have.
There's nothing you are enduring that I have not been through myself. Wrap that thought around you like your favorite blanket, warm straight from the dryer during the coldest of times. In that way, I am holding you still, long after I am gone. There is NOTHING you can do wrong that could make me UNlove you.
My love for you is written in your DNA. It's beautiful and impossible.
Being a well-rounded, GOOD, compassionate person just comes with age - these bumps, these choices are what will make you YOU someday. That said, I am so proud of the roads you have chosen to take. Please, eat, be merry, enjoy all the roads you skip down, hold hands with the ones that inspire you, but always EAT because it's fun and your body is perfect in every shape it comes in - mine has scanned the spectrum. That's cool with me. It means I connect and empathize with all kinds of people. You're beautiful. EAT.
So, I wrote this for you and perhaps read it at forty? You'll be able to relate and appreciate it better at that age. But the song playing below the poem - watch it, listen. We are all navigating this world, afraid. But fear is the opposite of love. It's the opposite of what I believe God wants for you. It paralyzes you. I may not have any choice in being paralyzed someday, but you do. Never choose fear.
You must quell the fear, and I'm hear to help you. I'm right beside you. Listen to the song. It inspired this...and you, always inspire, me.
Oh and a big THANK YOU to Healthline for the beautiful award as one of America's best MS blogs. I thank you whole-heartedly for acknowledging that I don't just write about multiple sclerosis on my personal blog. That means SO MUCH to me.
I live a life of love and loss, filled with children's laughter and the love of my life. I could never let MS be the only events I chronicled. If that is all I shared I'd be implying MS is all I am. I am MS and a huge bag of chips. Sometimes my life is about MS, but it's not the greatest part of me, or the hardest. God bless you Healthline for not only understanding that, but awarding Ugly Like Me for that. I'm humbled by your nod.
I thought He gave you numbers
I’d listen as you’d spin them in the air like saucers and wishes
Blown, tangled in your baby corn-husked hair
So incredibly, amazingly, simple and fine
Remember when everything was fine and all we had was time?
A song floating on summer air
Written by you, sure, but mostly mine
You’re my love song
Don’t ever forget that.
Written in fits of laughter and love
And somersaults down endless rows of summer green
And summer rain
Christening us from above
We knew it was right.
That is where you came from…
I worry about the ME part of you
Your words and heart
Perhaps the deepest root-words in you I cannot reach
You are my hardest part, my sweet
My stuttering heart tries to speak
We fail sometimes.
You didn’t come with some divine guide
To show me how…
But the blessing is, you have led me
I’m getting it now.
Despite stuttering and fearing
what is to come,
So easily I sing for you
Because it comes from love.
Ask anyone who grew up with me.
Love was the only thing I knew how to do.
I have lived in proverbial mountains beyond mountains.
Shame between shame
I’ve aged so magnificently in
a generation X way.
Pokie gave me space so I could learn and grow this way,
I must take a solemn oath, to give you space,
and let you hurt and happy that way, as well.
And all your secrets, your secret shames and hell
I will not tell
And all your happies, your achievements, and happy songs
I will sing along
Just watch my chest to see, whatever your song, you inflate me.
You lend me breath, and eyes to see.
I pray they don't torture and tease you
like they tended to do me
I pray you are authentic still, make it art
but more like Shel Silverstein
Go, go, go...authentically.
The summer air
The summer song
The shucked corn
Longer than your arm
Just take it slow
and keep your eyes open
Watch the road
And the cobbles where you step;
Just one at a time.
Know as you look forward
during your climb,
All you have to do is reach back,
to feel your hand in mine
I will never forsake you.
Love never leaves
We’re fine baby,
I can not teach you, what only comes
Just trust it, embrace it, engage it
and run with a smile and that kite
The one you made with your DNA
That rainbows all your favorite colors,
Your spirit, your light…
Catch it on the breeze and the wind
they send you, trying to make your life
a living hell
Learn to tuck your kite into the waves of wind
And let that kite take flight and swell
We’re fine baby.
The universe is well.