House of Cards

We leave for Disney on Thursday morning.  If energy was a color that everyone could see, our house would be lit up like a rainbow.  There is large mix of excitement, anxiety, nervousness, joy, happiness, and a tiny bit of sadness (<— I’ll get to that part.  Don’t worry, though) as we prepare for Tessa’s Make-A-Wish destination to Disney World.

As we near the start of the Make-A-Wish trip, I catch myself emotional from time to time.  What’s new, right?  But this time it has been different.  We have been showered with repeated good news–which was a first for Tessa, especially in the midst of preparing her for school and transitioning out of the Birth to 3 Program. There is a lot of good in our lives right now.  So much that I cannot seem to gain control of myself.  With that comes a bit of lurking sadness due to past experiences in life with Tessa.  Sometimes, bridging the gap between utter happiness and painful sadness is a hard task. Why?  Because the joy we are feeling came at a price at one point; a price that almost cost Tessa her life.  I may not have ever known this particular kind of life-changing, bright spirited happy without reaching the true depths of sadness.  And we would have never had the chance to experience something as amazing as a Make-A-Wish trip if Tessa and our family did not go through the hell that was our life for a year.  It is confusing, and I know that it may not make sense to a reader but I know what I am trying to say.

There are many factors that have contributed to this point.  First and foremost is finally hearing of Tessa’s remission, post treatment and learning of clear cytogenics.  This is an obvious contribution that I will forever be grateful for.  However, there is this whole village of people out there that carried us here from the beginning.  I know many, yet there is an equal or greater number of people who I do not know. Today I would not stand where I do without the support of loving souls who just wanted to love our girl and genuinely cared for our story.  I have not forgotten you, I swear.

I have a box in my office closet that is overflowing.  It is stuffed with cards, letters, colored pictures, etc. from people who encouraged us to keep fighting when Tessa was in treatment.  We took the time to read each and every heartfelt message and we soaked up every last bit of hope.  If anyone ever thought kids could care less about getting cards, I can tell you that that is simply not true.  Because I saw the way Tessa lit up every time she opened a card or discovered a handmade masterpiece from a child.  And though we do not get near as many now as we did then, I still sit in my car at the post office and read them through tears when we get them.  I do not think I can ever part with these cards…not one.


The picture doesn’t even do justice to the heaping mountain of cards that is laying on my floor.  

A lot of what I read in the cards now is messages of thanks.  “Thank you for sharing your story.”  “Thank you for sharing Tessa with us.” “I have followed you from the beginning.  I share in your ups and downs…”  There are personal stories and examples of how their lives have been affected, either by similar circumstances or just by reading.  People share how they donate to children’s cancer organizations and research now.  They talk about how Down syndrome has made an impact on their life and how they have changed.  They are glad to have come across Tessa’s story.

I send thank yous often and if I can.  I make sure that is a priority.  But the amount of thanks I have cannot be described in a 3″ x 5″ notecard.  It does not fit in the tiny envelopes that I send out with gratitude.  You guys, giver of the cards, have no idea the impact that you have made on our lives.  No, really.  I can’t come close to telling you what it continues to mean to us.

But know that those cards, that will remain in my office and in my heart forever, will always remind me to keep going…to keep dreaming. They will always remind me that from difficult times comes opportunities to leap ahead and to make a difference.  I always used to think I wrote for myself–to heal and to vent.  I am slowly realizing that I am writing for you all as well, as long as you’ll read.

I have all of you to thank for that.

We have a big week coming up.  Stay posted for stories and pictures…millions of Disney pictures!  


2 thoughts on “House of Cards

  1. I hope you had a great time in Disney World. This is my first visit to your blog, hopping over from the Down Syndrome parents listing at Noah’s Dad, and I’m in awe of your honesty. You must’ve gone through a rollercoaster and so undoubtedly did Tessa. Take your timet o process your emotions and also I hope the entire family enjoys your Make-A-Wish trip.

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