When we received Mia’s diagnosis over four years ago, they couldn’t tell us a lot concerning the path her development would take.

The genetics doctor showed us a chart with varying developmental patterns. 

She guided us through the many scenarios and patterns of developmental delay versus the development of a neurotypical child. 

She suggested that Mia would most likely follow a slow, but consistent pattern of development, sometimes taking years to gain what a typical child may achieve in the first year of life. 

The geneticist was quick to point out that she could only make projections based on similar cases. 

Mia is an individual, and her path will be just that. 

We were to take her explanations with a grain of salt.

What would be Mia’s fate? 

A crystal ball doesn’t exist to let us see how Mia’s future will unfold.

I’m actually very grateful that we didn’t have a crystal ball to tell us how the next couple of years would play out, it might have scared me or left me feeling defeated before we even got started on our journey. 

And I’m still happy that I don’t know what tomorrow will bring. 

I’d much rather enjoy my life with Mia today, than be caught up in the ‘what ifs?’ of tomorrow.

I am also forever grateful that our original geneticist was smart enough not to make huge sweeping predictions about Mia’s life to come. 

We’ve had plenty of specialists do just that along on the way, and those well-meaning predictions never really serve to help us on this journey. 

The developmental pattern that geneticist suggested, was more of a foreshadowing than a definite prediction. 

Foreshadowing lets you know that the plot may change on you, but doesn’t spoil the moment.

I don’t remember a lot about that day, but I remember something that my husband said to me, that has stayed with me.

There are a lot of unknowns and question marks ahead. 

Mia will show us the way and we will be there for her every step of the way to support her. 

We will grow up with her. 

We will be proactive when and where we can be, but we shouldn’t lose sight of the here and now.

With Mia being our first child, we have no gauge by which to measure her development. 

The only reminder that we weren’t following the ‘normal’ timeline for milestones were the parenting books, that I eventually gave away, or the playdates with children in Mia’s age group.

At the time I did not think much about the thought of ‘growing up with Mia’. 

But the more I thought about it, the more it made sense. 

It is good to be informed and to do research about Mia’s syndrome to ensure that we can be her advocates, but we shouldn’t lose sight of the fact that Mia is Mia and some things will just develop on their own. 

Mia indeed shows us the way in many aspects of our lives.

Growing up with Mia has taken on a new meaning. 

We have grown into the parents that we were meant to be, and I wouldn’t have it any other way.

Back at the time of diagnosis, if our geneticist had told us that we would have a house full of therapy and medical equipment, including a paediatric wheelchair and a big oxygen tank, I would have been scared of what the future held. 

Instead, we grew into our roles of being parents of a medically fragile, special needs child.

When Mia outgrew her baby stroller, we weren’t overwhelmed by the prospect of a wheel chair, on the contrary—we were relieved when it finally arrived. 

Excited about the opportunity to make Mia’s life more comfortable, I remember how proud we were to take her new wheels for a spin. Instead of being intimidated by the amount of therapy that Mia needs, we embraced every level of expertise offered to us.

Mia is only four, and far from grown up.

I guess that means that we also still have a lot of growing up to do.

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