What Really Matters.

Sleep. Perhaps its overrated. Sleep that is, because last night, I didn’t sleep.

Yesterday was our re-evaluation at our Neurodevelopmental Pediatrician. It always causes me to pause.

Upon leaving I usually begin to try and recount what happened. I try to identify her suggestions and of course decide if they work. For her. For us. Her job is to identify my child’s shortcomings, to find areas to build upon and of course give recommendations of what she sees fit.

As I buckled my child into her seat, I reminded her I loved her. I told her she was beautiful and incredible and I was so grateful she was mine. I realize that her life is a gift, she doesn’t belong to me. She is ours to raise and parent, to love and teach and one day return to her ultimate Father but yesterday as I climbed into my seat I asked again. “Why her?”

As I navigated towards home, the first call was my husband. Then as tears fell, I dialed my mom. I tell her everything. While I lamented the lack of growth the doctor saw, my mom reminded me that others see her growth and progress and perhaps a 30 minutes snipet at the end of the day isn’t truly an evaluation but a picture at that time.

As I hung up and continued to drive I was alone with my thoughts.

It was Inauguration Day. Our Country, Divided. Our world in a global pandemic and this child that I’d give my life for deemed as not progressing. What was it that I was doing? What am I not asking for from others? What does she rightfully deserve and how do I get that for her so next year, next year there is progress.

As I continued to drive, she asked me “are you okay, Mommy?” Her voice strong. She was acknowledging emotion. That is new. Its progress but why didn’t the doctor see it?

While I wept I thought of this year and how its taken so much from so many, from moments in life to be celebrated to life itself. As I did, I thought of our diagnosis and how its taken so much as well.

In the last five years we have joined a club that no parent expects. A club where parents are given a shocking blow and are expected to reassess their dreams and goals for their child, their family and accept what is to be. Its so hard. What I imagined, what I head expected, changed.

Inclusion Class. Gone.

Childhood Sports. Nada.

Friends. Not yet.

I thought of the experiences we’ve lost and also the ones she deserves that she most likely won’t get.

A Driver’s License.

Prom.

A Diploma.

Stripped from because of who she was created to be, a child living in a typical world who is neurodiverse.

I realize life isn’t fair. It is our job as parents to celebrate the journey we are on and each child’s unique experiences but some days, some days you feel that punch in the gut and it takes a minute to see what you do have.

She’s healthy.

She’s beautiful.

She speaks.

She engages with others.

She is truly loved.

She is progressing, even if not seen in the snipet in time.

So I didn’t sleep. I wept. I held her close to me last night and thought of what a remarkable being she is and how while I can’t make life perfect for her, I can make it good.

So today, as I dry my tears, pour extra coffee and begin to contemplate what will come of her future, I am grateful. While I wouldn’t choose this, I am grateful that I am living an experience that allows me to see the big picture. It allows me to be more understanding, more tolerant, to accept others. It allows me to see what really matters.

Perhaps everything I thought I knew about what I wanted for my children, for their lives was wrong. Perhaps the gift of health, love and support is means much more. And sweet Serrie, we will walk this road together and when it gets too hard, I will carry you.

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