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.

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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!  

 

Dear Tessa: You Did It

Dear Tessa, 

I got a phone call today.  An important one, but I will get to it at the end.  This letter is long, so go ahead and grab a seat.  

There is so much going on in your life.  I know that is nothing new, but it sort of feels that way.  New and exciting changes occurring, trips coming up, and distant painful memories keep fading further back in my memory.  

When we were first told that you would get leukemia over a year ago, I really did not know what to expect.  Cancer is such an evil thing, and I could not bare to think that my child would have it.  But you did get it, and I painfully watched as you slowly overcame all that leukemia tried to throw at you.  I cried more than you ever did during treatment.  You handled everything so gracefully in manners that I have since envied and taken pride in all at once.  

I always say thank you when people tell me how amazing, how strong and how beautiful you are.  I know you are all of those things.  However, the impact that you have made on those around you in the presence of unfortunate circumstances (cancer, never Down syndrome) never completely hit me until just recently.  

We held a blood drive and swab party in your honor two weeks ago.  We had an original goal of 40 units of blood and 25 swabbers to add to the National Bone Marrow Registry.  Pleasantly to my surprise we ended up collecting 71 units of blood and 69 new swab registries!  People waited long periods of time to donate in your honor…to have the chance to save someone’s life.  Because of you, there were people who put their fears aside and donated blood for the first time in their lives.  Because of you, there were people who volunteered themselves in the event that someone else in this world would need their cells for a transplant.  They all gathered to give you messages of hope.  From that hope blossomed courage and strength that we needed in order to finish what we set out to do…which was to never, ever, EVER give up.  

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And we never did.  Because we had hope to push us through.  Four days following your blood drive, I helped you walk your first Survivor’s lap at Lafayette County Relay For Life.

Tessa relay  Tessa relay 2 tessa relay 3 tessa kendal relay

Last week we found out that you will be the Grand Marshall in our community’s 100th Anniversary School and Community Fair parade, escorted by a horse drawn carriage.  Two days ago, we celebrated you becoming a Wish Kid for the Make-A-Wish Foundation.  Your wish was granted, and in two weeks we will be flying down to Disney World where you will be free to be the princess like the ones you adore so much.  You can finally hug Mickey Mouse and eat ice cream for breakfast.

wish kid

When I thought that life certainly could not get any better, I got a phone call that assured me it does.  Your oncologist called today with your recent biopsy results.  She asked how you were doing and how our family was doing.  When I told everything is actually going great, she said “I have more good news for you Becky.  Tessa’s blast population has decreased again, where she is now considered to be in remission.”  I was in the produce section of Piggly Wiggly sobbing and laughing and thanking her and sobbing some more.  Remission.  REMISSION!  This was a word that we have not heard since after your first round of treatment.  There is still a very small, yet normal, percentage of blasts–not even enough to send in for further testing.  They are going to continue to monitor you in three months and hopefully extend the time between each biopsy from now on.

You did it, bug.  You did it!  I am beside myself and bursting at the seams with love and pride and happiness…and joy…and relief…and of course tears galore.  Wherever you are when you read this letter, I hope you realize and understand the impact that your little self has made.  Someday I hope that I can sit and tell you that every frustrating moment, every time my heart broke, every time I thought you wouldn’t make it, every long day spent in the hospital and every emotional procedure all led to this moment.  None of those horrible times can ever steal the joy that I have today while we celebrate your victory.  I hope that you know that nothing can ever stop you from being great.

TODAY you are bigger than leukemia.  You are more than cancer.  You are more than Down syndrome.  You are a rock star!

I love you Tessa, and I could not be more proud of you.

Love always, Mom.