Yet

She can’t use a jump rope.

She can’t jump over a low hurdle.

She can’t do an agility coarse.

She can’t run a mile.

She doesn’t control her impulsiveness.

These are some of the concerns raised by a team member during this year’s annual IEP meeting as we prepare for third grade. I get it. Her size, lack of skill, coordination and stamina could be cause for worry. Don’t get me wrong, I’m grateful for a team that cares so much for her and her safety.

However it looks different from our perspective. If we withheld her from every activity that made us worry, she would likely never leave the house. We’ve had to challenge ourselves as parents to see beyond the fear and the worry in order to open more avenues of success.

In life, we have two choices–we can either settle or we can find a way; something we learned quickly after hearing that our daughter was born with Down syndrome. While one may focus on the negative, we chose to alter each limit with one simple word.

She can’t use a jump rope…yet.

She can’t jump over a low hurdle…yet.

She can’t do an agility coarse…yet.

She can’t run a mile…yet.

She doesn’t control her impulsiveness…yet.

You know what else? She can’t do her own laundry, cook a meal or drive a car…YET. She can’t write her name in cursive or do long division…YET. She can’t babysit or ride a bike without training wheels…YET. No, not yet; just like other kids her age. But we believe she will. Maybe not today or tomorrow. Maybe not next year or the year after. But when she is good and ready.

And should those things never come, we will be proud knowing that she gave it her best shot. We’ve seen her jump hurdles higher than the ones you’ll find on an agility coarse, and those are the ones that matter the most to us. If we only focus on the things we can’t do right now, we will never know what we can truly achieve.

As for all of the these things she can’t do now…she just hasn’t done them yet. Her capabilities far exceed her limitations.

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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.