On This Day…

Five years ago today, we received a phone call. Earlier that morning I had taken Tessa to the hospital to get her labs drawn. She was on a wait and watch protocol for Myelodysplastic Syndrome, and we knew at some point she would likely transition to leukemia. Many months led up to that moment in our living room where my husband and I sat together while listening closely to the voice on the other end of the phone. She had only said my name and I knew. Before she could finish her sentence, hot tears streamed down my cheeks.

Even though we knew this was coming, we still clung to the little bit of hope that this was all a mistake. That her labs and biopsies were incorrect. That there was a chance she could avoid treatment. It was something we told ourselves on the surface to save face; all the while knowing that this was inevitable. Our daughter had cancer and lives shifted forever.

Her body was covered in petechiae. Her skin was as pale and mottled. She was weak and miserable, crying in our arms. Our baby was sick…really sick. On the phone, the doctor urged us to get her to the hospital immediately. She told us to pack bags for at least a week long stay in the hospital while they ran more tests to figure out the best course of treatment. In the midst of packing, I remembered our six month old baby at daycare and my heart shattered. What would happen to our family?

Before leaving town, I pulled up to our daycare to see our littlest babe while my husband and Tessa waited in the car. Unaware of our troubles, her face lit up with excitement when she realized her mommy was there. As I scooped her up in my arms, I wondered when I would get to see her again. I walked away from that house not knowing if that terrible disease would take her big sister from her. Fear won that day and several days to come.

The hours that followed are now muddled memories. People rushed in and out of our hospital room, throwing medical terms and phrases at our blank faces. They asked questions we didn’t have answers to and said things that didn’t make sense.

There were treatment road maps, complicated documents that required signatures, beeping machines and many unfamiliar faces. The food trays that the nurse had ordered for us were cold and untouched on the counter. I quietly rocked our girl to sleep as she received blood products for the very first time, desperately trying to wrap my head around how we were so swiftly caught in the undertow of our current situation.

This was our life.

A small, but significant chapter, in the big book of us.

Like a puzzle, our pieces remained scattered. Each piece just as meaningful and necessary as the next, despite how confusing and frustrating they were on their own. Sometimes coming back together, only to be broken apart again and again.

But even apart, we were whole; and when all of the pieces aligned just right, we created a beautiful scene.

Every year on this day I recall our heartache and desperation. How I spent the first night on that cold hospital bed, hopelessly bargaining with the man upstairs to let me take her place.

For parents like me, diagnosis day isn’t something we can escape. It may become less obvious in time, but the effects of that day linger. From how we plan and prepare to how we confront and overcome, and everything in between.

I do not relive painful anniversaries for the sake of sorrow, rather to remind me how far we have come. To remember the mountains we moved when climbing them wasn’t an option. To pay homage to moments that changed our course; acknowledging that we absolutely can handle hard things in life.

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That One Simple Phrase

“…they’re just so happy all the time; not a care in the world. I envy that…”

She said this to me yesterday morning in casual conversation; referring to people with Down syndrome like my seven year old. She was sweet as she spoke, and I could tell she was genuinely coming from a good place.

My mouth wide open, unable to respond, I briefly closed my eyes and took a moment. I know myself and I likely wouldn’t have said anything if I wasn’t getting my teeth cleaned so I withdrew to my comfort zone where I process and write it out later. I also just got home from a retreat for moms of kids with Down syndrome, and I’m feeling a little soap-boxy and inspired.

This phrase…sigh. The “they’re always so happy” phrase. If you have a child with Down syndrome, you probably know what I am talking about, and maybe you can relate. It doesn’t offend me, I swear. Believe me, there are far more harmful perceptions than this. It does, however, carry a certain sort of ickiness that implies individuals with an extra chromosome are angelic. A common blanket statement that groups all people with Down syndrome by suggesting they live their lives blissfully unaware of knowing anything other than happiness. That they carry on without having real feelings. I’ve never heard anything so well-intended that makes me grimace as much; and yet I hear it often. The frequency of this sentence tells me how much farther we have to go so I’ll share my two cents.

Having Down syndrome has not shielded my daughter from experiencing a wide range of emotions. It also has not hindered her ability to process them either. I know this to be true because I have fought back tears as she cried in my arms when she felt left out. I have watched quietly from the other room when she tells her little sister she is annoying her at breakfast. I listen as she expresses her frustration every morning when she attempts to tie her shoes independently. I’ve witnessed her prideful victory dance after she whooped my butt in game of Trouble. She has screamed with excitement when she received a birthday party invite from a friend only to be incredibly jealous when her sister got an invite of her own a few weeks. And if someone ticks her off, you better believe she will let them know.

My daughter is compassionate and shows empathy toward others accordingly. She knows the weight that words can carry, and she absolutely feels it when they are used to hurt. She cries when she is upset, and sometimes she yells when she is mad. She laughs when she finds something funny and hugs when she feels the need. She says things like “I love you,” “you’re the best,” “you’re driving me crazy,” and “you’re a meanie-head,” and she means all of it.

An extra chromosome doesn’t mean her thoughts and feelings are the exact same as any other person with Down syndrome. She is not a carbon copy of someone else. That forty-seventh chromosome doesn’t make her live in a state of constant happiness. Nor does it mean she is always nice or that she never makes mistakes. She, too, learns life lessons the hard way and apologizes when she has let someone down. She certainly is not happy all the time, and we do not expect her to be.

Like our other children, we encourage her to express herself any way that is comfortable and share how she is feeling. To say when she feels hurt, angry, abandoned, sad, frustrated, annoyed, uncomfortable, joyful, bored, amused, confused, nervous, excited, ashamed and of course when she is happy.

She is a real person who is capable of understanding and experiencing emotions, complete with her own set of thoughts and views on life. Just like you, me and every living human being, she has feelings and they are valid. To suggest anything otherwise devalues her and everyone else that this phrase is intended for. We can’t possibly envy something we all experience, even if it may translate differently from person to person.

Appreciate her honesty and genuineness. Acknowledge her feelings and know that she is aware of the world around her. None of which has anything to do with the fact that she has Down syndrome.