Indy, here we come!

Happy 4th of July week!  We are preparing for our holiday weekend, and I can already tell that it is going to be great!  I have been on Pinning red, white, and blue themed desserts-that I certainly won’t have time to make-the last few days.  While I probably will not even end up attempting anything fun of the sort, it sure is making me feel festive!  I am heading to the dollar store later to stock up on all sorts of prideful decor for our campsite.  Bring on the chincy paper stars, confetti, sparklers and the beach because this chick is about to get real American this weekend!

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I leave later next week for the National Down Syndrome Congress Convention in Indianapolis where I will be set up in the exhibitors hall again.  My dear sister and co-pilot Erika will be making the trip with me.  Who doesn’t love a good sister roadtrip? If we make it there even close to what Google Maps says, I will be thoroughly impressed!

I am especially excited to see old and new faces, to meet new parents, families, friends and share the joy of 47 Strings:  Tessa’s Special Code with as many people as possible!  We had such an overwhelming response in Denver last year that it is hard to not look forward to Indy next week!  Of course I am nervous. That will never change.  It is a good nervous though…like first-date-nervous.  You know, the butterflies in your stomach, eager and anxious type. Because I hope more than anything that I can send a take-away with those that I meet that leaves them feeling empowered and excited whether they have been walking this road for years or are just taking their first steps.  I want to make the marks that were so deeply embedded on my heart when I started out.  That is why I am where I am today, spreading this message so dear to me: that we do not have to fear an extra 21st chromosome.  

I am coming into this convention with one more good year under my belt.  We learned a lot from Denver last year and are better prepared for this year!  We will have PLENTY of books on hand, organization info packets, fundraising opportunities, DS Awareness bracelets, etc.  We also have a beautiful brand new upright banner that will help make us easier to fine, and of course…tons of pictures of Tessa!  Please remember that a portion of all sales go directly back into the Down syndrome community to help furnish the goals that we are all working toward:  achievement, acceptance and opportunity.

Tessa will not be attending the convention again this year.  I know many people were hoping to meet her, but unfortunately it is too soon after treatment.  She still does not handle large crowds well either.  I can always hope for next year!

Indianapolis, I hope you are ready for us…because we are ready for you!  If you will be at the convention, please stop by and say Hi!  We would love to see you!

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.”  

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Love, Mom