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!

 

Spread The Word To End The Word: 2015

Every year I try to create a post highlighting why I feel it is important to support and practice the Spread The Word To End The Word movement.  In an attempt to sum up just how I feel, I am going to redeliver last year’s post with a few changes.  We live in a society where having an opinion is often an automatic right to discount the opinions and feelings of others and, essentially, where compassion is lost in a cloud of arrogance.  Let this not be a lecture.  Let this be a simple message.

Last year I wrote this post in the hospital while Tessa was finishing her last round of chemotherapy, for what I hoped would be for the rest of her life.  I remember the fire that ignited in me knowing that despite her fight for life was also her fight for respect in everyday life outside of cancer.

There are many words I can use to describe Tessa’s journey to today. Retarded is not one of those words.  And it never will be.

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Tomorrow (March 4, 2015) is the day where once a year I, along with thousands of others, stand united and encourage people everywhere to hear our voices.  We ask for this pledge to be signed, understood, practiced; and not just for today, but every day.

I am talking about the movement ending the use of the r-word. Retard.  Retarded.  It is more than a word.  It is a classification labeling people who do not deserve the label.  It is a word that minimizes the vast accomplishments that my daughter and others make each and every day.

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I am not stripping anyone of their first amendment rights (because, yes, I have heard that one before).  I am challenging people to be better for others and for themselves.

Why?  Because we need a reminder to be considerate, courteous, compassionate and polite.  It might not mean anything to some people, but to many others–like me–it does.

This world places limits on people with intellectual disabilities and challenges them to rise above.  Yet those who place the limits fail to stick around for the good part.  Not only do they rise above, they soar far above the expectations. They conform to the standards of everyday life.  They persevere.  They do it all, but the word still exists. It is still used.  It is still hurtful.  

Tessa is more than the word that is used to reduce her.  She deserves better.

Everyone does.

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I am not over-sensitive.  I am a mom of a child with special needs.  I am a mom of typical children.  I am a human being asking for a shred of decency and Respect.  Please spare me the speech that when the r-word is used that it implies nothing about people with differing abilities…because it absolutely does.  Preaching that we are over-sensitive is a bad excuse for poor behavior when it is so simple to be better.

So if it is just a word, then please pick a different word…a better word.

Sign the pledge.  Remember it.  Pass it on.

Visit http://www.r-word.org

***Steps down from soap box…

spread the word