Gi’s Journey

The Specialist

You walk in with your little one in tow and sign in to see the specialist. You keep reminding yourself to breathe as you look down at your shaking hand to review the long list of questions you’ve written down. You’re nervous. You begin to think over every possible outcome of this appointment that you’ve been waiting months for, but as you sit in the waiting room full of people, you’ve never felt more alone. 

 

The nurse walks your family to an open room and as you walk down the hall you realize that within these rooms people have either heard the best or the worst news imaginable. Anxious and overwhelmed to know where you fall within those outcomes, you’re forced to wait for what seems like an eternity.

 

You begin to feel a bit angry thinking about the fact that you and your child have to be here. No one wants to be where you are right now. You’re drained from all of the assessments and milestone questionnaires that rip a piece of your heart out each time. But you push those feelings back because you don’t have time to entertain pity. You don’t have time to get in your own way.

 

This is the appointment you’ve been waiting for – your child’s Pediatric Developmental & Neurological appointment.

 

Finally, you hear a gentle knock and the door swings open. It begins. With one deep breathe and the promise of not allowing yourself to cry, you brace yourself.

 

Global developmental delay, significant gross and fine motor delays as a result of decrease gray matter, possible cerebral palsy, speech referral needed, audiology assessment inconclusive, additional physical and occupational therapy needed. Prognosis unknown.

 

You feel the full impact of every word.

 

The specialist begins to rattle off about statistics, but all you want to know is what it all means for your child. Terms like quality of life and age-appropriate milestones are the focus of the conversation and you begin to feel flustered because no matter how prepared you thought you were, you just weren’t prepared enough. Over and over you hear your instincts confirmed and what was once considered a possibility gets entered into her permanent file. 

 

It hurts deep. 

 

No one asks you about your mental health or about life outside the walls of appointments. No one honestly cares.  No one points you towards community help. That’s up to you to figure out. All that is available is unfiltered information and you are simply expected to process and proceed with life per usual.

 

Except life is no longer usual.

 

Time flies by and your appointment comes to an end. Between all of the “I don’t know” and “We’ll just have to wait and see”, you crumble your list of questions, which went unanswered and have now become irrelevant. Whoever you were before this appointment stops existing. You have now entered into a foreign world where you don’t know where you’re going and you don’t know what you are doing. 

 

It’s time to go and you grab your child and gather your belongings, but leave behind your hopeful expectations within that tiny little room. You’re told to call back if there are any significant changes, but to continue to follow up with all of your child’s other specialists and all of the therapy assigned. Significant changes? You’re whole life is being flipped upside and inside out.

 

Isn’t that significant enough?

 

Your mind is racing and you are trying to process what you’ve heard. You look at your husband and have no clue what he must be thinking or feeling but it just feels too much to talk about at that moment. You plaster a smile on your face because you have to keep it together for your children, even though you feel like crying because somehow you can’t help but blame yourself for all of this. 

 

But then it hits you.

 

Maybe it’s that same day, as you finally make your way out of the building into fresh air. Or maybe it’s weeks or months later. Somewhere in this journey it hits you that you’re all going to be okay and begin to re-define what that even means. Life will inevitably be different, but a fire starts inside of you that is propelled by a complex mixture of frustration, optimism, sadness and a lot of love, which will fuel your quest to create a better life for your child.

 

You promise yourself that you will find a way, even if you have to bulldoze and build your own. You reject the idea that your child is somehow damaged goods and develop a thick skin against negativity – one day at a time.  Sure it will be messy and you’ll feel as if you have to start over a million times, but just as you experience a setback, many of them to be honest, you will always find a way to press on.

 

Always.  

 

Your child’s needs may require everything you have, but you will discover parts of you that you never thought existed:

 

Grit.

 

Power.

 

Endurance.

 

You’ll use the same kind of powerful love that can lift a car when a child is trapped underneath to pull your own child out from under all the stereotypes and labels that society will put on them. You are more capable than what you give yourself credit for and every day you’ll surprise yourself how you’ve made it through all the previously presumed impossibilities. 

 

But after your hardest appointment, there is one thing that you will eventually come to know:

 

Despite the many years of education, training and experience, the specialist doesn’t know everything. You will spend a lifetime defying odds and opinions because they will never know the full potential of your child and they most certainly will never be able to comprehend the power and depths of your parental love, which CAN and WILL move mountains.

 

May 21st 2015: In the exam room just before our Pediatric Developmental/Neurological Appointment

 

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7 thoughts on “The Specialist

  1. Love Giselle’s face in that phot!

    Thank you for sharing your experience. I know how you felt and feel. My daughter has a few problems as well, and I dislike how doctors just assume what will happen or how she will be. So far, she has done better then they expected. So now I take their expertise with a grain of salt. Love your writing, keep up the GOOD fight!!!

    1. Thank you so much !! Overcoming professional opinion and not letting it break me down has always been the hardest part. But after I started connecting with other families and heard their stories and how their child was defying odds, I realized that I needed to never limit my child based on their diagnosis. <3

    1. Thank you so much! She’s a fantastic mama and I’m just glad I can just share just a little bit of their story!

    2. Hi Kelley 🙂 Thank you so much and we love following you guys!!! It’s never easy to share about the tough times, but it’s part of our journey so I can’t leave it out <3

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