Embrace the Journey

 The night my daughter’s diagnosis was confirmed, I remember sitting in the shower with her.   That may sound strange, but I found carefully bringing her tiny, preemie body into the shower with me easier than giving her a bath. As the water hit us, I promised her that no matter what this diagnosis meant, I would be by her side. Me and her, always.  

At that point the diagnosis was a complete unknown – cerebral palsy could mean so many things. Thankfully, I knew searching the internet wouldn’t help, but my questions were endless. Would she walk? Would she talk? Would she be able to have friends? A partner? Live independently? Go to the bar? These questions were just the tip of the iceberg. I spent my days trying to get answers to these questions and I latched on to all sorts of opinions about her future from all kinds of people. What I didn’t know then is that no one had the answers, not even the specialists.  

When my daughter was two years old, we had a very important appointment with the pediatric neurologist. Looking at her cranial MRI, the neurologist exclaimed, “without a doubt, this little girl is going to talk!”  

Nine years later, Elise is nonverbal. Even this neurologist, who to me was my child’s “god”, didn’t have all the answers.  

I spent the first few years trying to do everything right. Physiotherapy three times a week and exploring every type of intervention. We were extremely fortunate that money wasn’t a barrier, but this also came with heavy expectation; I had to be sure we weren’t missing any available resource because the sky was the limit. 

Elise is now 11. I certainly don’t know everything there is to know, but I do know time goes quickly. I know that being the parent of a child with a disability can be all consuming; the worry can be crippling and imagining the future can make you feel completely out of control. I also know you don’t get those years of worry back and that worrying doesn’t make a difference. Your child will be the amazing human they are meant to be – no matter what you do, no matter what therapy you access.  

In my professional life, I preach the importance of early intervention. I believe in its value in my heart, but I also know that no matter what anyone predicts, no matter how much therapy you do, you must embrace your child and the unknown.  

Embrace the unknown. Try to see the beauty in it, to see the lessons that are being taught to you and others around your child. You won’t get these years back. If your sole focus is on therapy and all the unknowns of the future you will miss “just being” with your child.  

I know how it feels when someone who doesn’t understand the journey says, “everything happens for a reason”. I won’t say that, but my own experiences have given me the confidence to say “embrace the journey”, because I truly don’t see what other positive choice there is. I offer you these ideas as encouragement to help you do just that.  

Take care of yourself 

You’ve heard it a million times before, but anxiety and worry don’t help, they only steal time, energy and joy. These precious toddler and preschool years are fleeting, so do whatever you have to do to move out of the cycle of anxiety and worry and into a space that brings you more energy – therapy, self-care, medication, whatever is best for you.  

Be with your child on their agenda   

Be with your child 15 minutes a day doing what they want. Do it even if it’s the thing they are obsessed with and it’s boring - indulge them in what brings them joy. Passing a ball back and forth is mine and Elise’s thing. Delight in the simplicity and joy of time with your kid.   

Let go of the therapy (sometimes)  

Again, this doesn’t totally support my professional world of early intervention and therapy, but you and your child need a break sometimes. Think about what you would expect a typical child to do in a day and then compare it to what we expect of these little kiddos with disabilities. Take the break! I used to call it a “therapy holiday” and it’s amazing what would happen naturally during these breaks. In my experience, it’s like it would all come together.  

Anticipate the glimmer  

I wait for the glimmer. I pray for the glimmer. And what is the glimmer you might ask? The glimmer is that moment in time when your child achieves something you’ve been working towards, and it gives you hope and renewed energy. The glimmer can come from something monumental or from the slightest improvement. Sometimes it takes forever, but the glimmer will come. Anticipate it, celebrate it, and hold onto it.  

These ideas come from a decade of living and breathing life with Elise. My sincere hope is that as you try them, you find a little bit of beautiful simplicity and encouragement to give strength and help guide your complicated journey.