Dear Tessa: Letting Go Of “If”

Dear Tessa,

Have I ever told you how much I love waking up to your sweet voice? I mean I don’t really love when you wake up at 3:30 a.m.; but then Dad puts you in bed with us, and the first voice I hear on those mornings is yours saying, “Hi Mommy.”  Then you look at me; those blue eyes begging me to stay perched in bed all day…like you are asking if we can watch Disney Junior and veg all day.  The life…that sounds perfect to me!

We have been hospital free for almost three months now.  You are doing so good.  I mean good to the point where it catches me by surprise and draws me back.  A part of me wants to run full-force with you into the future.  But there is another part of me that doesn’t want to get ahead of ourselves.  What if?

I hate what if’s.  Because I just cannot seem to control them.  What is if anyway?  What happens when if becomes more than a word; rather a state of mind?   Then you become me.  I am stuck in the land of if right now…constantly worrying about upcoming appointments and the future.  I know better.  No, really I do.  It is just my human nature, I guess.  (They say that happens to moms sometimes.)  I just cannot help but wonder, though.  Such is the question on many people’s mind, I assume:  “How will I know that everything will be okay?”

I don’t.  No one does.  The problem is that I only looked at the negative side of if. “What if it comes back?” “What if she needs a transplant?” “What if Kendal is her match?”  “What if she isn’t?” “What if I lose everything?” No wonder I am stuck.  How can I expect to be in any kind of positive place if I only worry that things might not work out?  It is not easy, though, finding balance in questionable situations.  However, I feel incredibly blessed to know that you have come so far.  Therefore should I not be wondering things such as “what if she overcomes all of this?”  “What if everything goes smoothly?”  “What if she is cancer free?”  I do have the ability to change my thoughts after all.

This is what I want you to know about life:  Don’t be blinded by optimism, as it can be deceitful.  Don’t be tempted by pessimism because it will weigh you down.  Don’t be jaded by realism because you will quickly settle for anything.  Be an optimist, a pessimist and a realist. You can be all of them as long as you allow yourself to see clearly.  We are allowed emotions and feelings.  Just remember to find balance in what truly makes you happy and let go the all the if’s that hold you back.  Promise me that you will never hold back, okay?

Someone told me last night:  “Trust that you are right where you need to be.  You path is lit one step at a time.  If each step was light to the end, you would run with fear for everything that you would and would not see.  Trust yourself and trust your path.”  

Tessa mirror

Love, Mom

I See You…

I took Tessa on an all-day shopping trip with my friend and her daughter over the weekend.  It was my first time taking her, but I knew she would do fine. Even though I knew there was a chance for major over-stimulation, I also knew that she would appreciate all that she would see and do that day. After a rough car ride, we made it to Kohl’s to do our first round of damage.

That is where it started.  Tessa has been in my life for almost three years now so I am used to this but I still notice every person, every time.  

I pushed her in the cart through the store catching your stares out of the corner of my eye or right in front me.  I notice the whispers as you thoroughly glance her over.  Here is a cute child…you are certain she is a girl…but then you see her hair.  The questions and possible scenarios begin piling up in your head.  I see your analyzing and personal assessments begging to know more about the child jabbering away in my cart.  I caught the half-hearted smiles and the sympathetic ones, too.  But I pushed her through, asking her if she thought that green shirt was cute.  She did.  I put it in my cart and bought it, too.

So clearly can I see what you are thinking. They are the same faces I would see when people noticed that she had Down syndrome the first two years of her life.  “There is something different about her.  Look, but don’t look too long,” they say to themselves.  Only now they see the bald headed child with Down syndrome.  Thankfully I dress her in lots of pink and purple and girly attire when we go out to help with the gender-confusion.  It doesn’t help.

I saw you, too Dad of the teen daughter as you very specifically turned her into a different rack as we walked near you.

I saw the young child with his head curiously slanted, “does her mom cut her hair like that?”

The elderly women often confronting me, “is it a girl?”

“Does she have cancer?”  

“How is she doing?” 

“Why did this happen?”

“What did she go through?”

I noticed the man at Chili’s lean away from her as she reached out to touch his shoulder.

I know when someone thinks she is adorable.  I know when pity is being cast through a glance.

I watch the blank stares and double-takers.

“WHAT IS HER STORY?”

I see those who have been there and those “who can’t imagine…”

You think I did not see you, but I did.  I always do.

I am not mad at you for looking.  I am not mad at you for staring.  I have been there.  We’re human.  I am also not mad that you turned away.  I get it that you think we are different.  Not entirely, but I sort of get it. I get that we might be uncomfortable to pass by…for whatever reason.  But we carry on anyway.

I have studied these looks her entire life.  I have exchanged them myself.  I know.  I know you want to know more about her.  I know you are concerned.  I witness the unknown draw curiosity to you at light speed.  I smile as I watch you struggling to decide if you should say something to me or if you should let us be.  We carry on normally. In order to help you solve a little bit of the mystery, I let you know that she is great by interacting with her as I would any other time or place. And I don’t say a word to you.  She usually asks for a high-five or knuckles.  She always says, “Hi” and blows a kiss.

For a moment, you smile.  Your questions and your concerns subside.

You will think of her later.  She has that affect on people.

And if you see us again, you can say “Hi.”  You can talk to us.  We are happy to share her story.  We are happy to meet you.

tessa bow