Dear Tessa: Stepping Stones

Dear Tessa,

We are accustomed to welcoming adversity into our lives; much on your behalf.  But you always do it with so much grace, as though you were expecting these moments in your life while the rest of are taken by surprise.  That’s just how you roll.

Today is the day.  One year ago today.  Do you remember?  I wish I knew if you did.  I think about that all of the time.  Does she recall any of it? 

One year ago today, we woke up in Room 4121 at the hospital–the room where you were first admitted many months before when we found out you had leukemia.  It was a beautiful Saturday morning. The sun was finally shining after a week of dreary overcast.  It was there on that very day when your inpatient fight against leukemia ended (full-circle) in that room when your doctor told us you were well finally enough to go home.

The bubbles and tears fell all over the hallway as you made your final walk to the door.  Joyful hugs and sentimental goodbyes followed you on the way out.  No longer would you be a prisoner to any machine. No more chemo.  No more pulse ox.  No more midnight labs.  No more painful cries from the neighboring hospital walls.  No more suffering. The time had come. It was over. You did it girlfriend.  You really, really did it.  We waited so long for that day.

Most of your life has been paralleled by statistics, starting from birth.  After a while I paid little attention to statistics regarding your extra chromosome.  Eventually in your cancer treatment, I had to do the same.  What good is it to worry about numbers that can change in an instant?  That was a process I learned in time.  Sure those numbers can build you up, but they can rip you down just as easy. If I could have had a glimpse of your life up until that point prior to you being born, what would have those odds looked like on paper? Probably not great.  But look at you.  You break the rules and push the limits, proving that you are far more than any statistic that tries to overshadow you. You are fearless and amazing.

And darling, the odds are ever in your favor.  (In my best Effie Trinket voice).

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Because of you I know that anything is possible.  Together we can dream of dreams that others may shy away from.  We plant roots where we want them planted and make our own stepping stones for any path we travel.  Certainly we have no idea where we are going, hopefully miles from ordinary.  It all seems normal and adventurous. Because of you I see the world so differently. And I know that others do too.

When you were born, I remember wrapping you in my arms and holding you for days; terrified that I may fail you.  Scared because I knew nothing about Down syndrome.  Scared because I knew nothing about being a mom.  I let you take the lead and here we are now today, far from failing.

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Last night we gathered our families and friends at home and celebrated the many facets of you and all that you have overcome in three years; toasting love, life and miracles.

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Today on World Down Syndrome Day, we celebrate the same.

Do me one favor–a huge favor.  Never, ever, ever, ever stop believing in yourself.  There is nothing in this world that you cannot do.

Love, Mom.

One Year

On Saturday, we will celebrate one year from the day Tessa walked out of the hospital after her final round of chemotherapy.  My little baby bird, blowing kisses and making her way through a bubble parade toward sweet freedom.  Bittersweet freedom, that is.  We hauled our things to the car and headed for home, anticipating that final homecoming and the chance to get our lives back after cancer tried to take it all away.  No more dated events in our family history that would be marked in sadness because of leukemia.  It was the end of an era.

Some warned us about life after treatment; preparing me for the unforeseen part of this fight that can come when all is said and done.  But I wrote it off.  Because I thought what we needed most was to be free of treatment and back together at home as a family of five.  The last twelve months of rebuilding our fragile structure, post-treatment, proved harder than I allowed myself to be aware of. At first glance, we were solid.  We took care of our kids, got right back to work, bought a campsite and dreamed about what our future would be.  We traveled to Disney World and sent Tessa to school for the first time.  But things were different; and we had to learn to cope with the tides of leukemia, even though we successfully brought Tessa home with us.  People would comment “how strong we were,” assuming that our lives had slid perfectly back into place. Eventually my confidence in the words of others faded. Instead of saying thank you, I would smile to save what little face I could bare. Just because it was over did not ever mean than it was really over. There were scars, not visible to onlookers, but present to us.  Life moved on without addressing the damage, but knowing full well that it is there.  That was then.

Relax.  What I know now is that all of this was and is normal.  Totally and weirdly normal.  The kind that is okay, but not okay at the same time.  It is a process, much like the various components of our life. We have to navigate every stage, even the most undesirable.  I am grateful for time that has allowed healing over the last year.  We learned how to love in ways that made us reevaluate the past, present and future.  We did it.  All five of us.  We carried Tessa through the unimaginable.

Families who endure life with disease or sickness often face more than the medical struggles the come along with it, often feeling they cannot talk about the various stages of healing that follow such events.  I personally know that I cannot possibly expect to forget the hardships that pushed my family close to the edge, often stretching us as thin as possible. I do not wish to forget it all either. Because I am still learning how to deal; how to grow from each moment that knocked us down.  From each of those times came opportunities to stand. That was the difference between getting by and getting ahead.  And it still is.

It has been a long year.  We have come so far from our extended days and nights spent in the hospital and the cancer lifestyle.  I never experienced raw humility until I had to beg for mercy on my child every single night to heal her…to save her.  That shifted me.  Even now when I am lost or frustrated or confused, I recall the moments that brought me to my knees. When I am joyful or excited, I do the same.

last chemoWe can never fully prepare for the unexpected.  Trust me, I have tried.  I am relieved to have let that part of me go.  (My husband would most definitely agree.)  Replacing fear with hope and finding the silver lining in every situation has been my saving grace.  I cannot wait to see how we change month after month into the following years, using our personal experiences for growth in the future.

It is early in the week, and I am already quite sentimental.  I remember the day the doctor told us that we could take Tess home.  “Are you freaking kidding me,” I cried to her doctor followed by an obscene amount of tears. Dan picked up his phone and before he could even say hello, I screamed that she could go home.  He arrived an hour later with twenty celebratory McNuggets, french fries and ice cream. Because Tessa’s dad knows the way to her heart.

Thank you all for being on this journey with us.  For each and every person near and far…thank you for letting me be honest and real. Most importantly, thank you for letting us feel love and for showing us how to give love back.  On Saturday I will share Tessa’s letter for March.  World Down Syndrome Day and her one year anniversary from hospital freedom. It will be a whopper and I can’t wait!