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Reality bites.

It’s slowly starting to sink in.

What everything means.

What we could be faced with.

What potential challenges look like ahead.

What this life may look like for our sweet Pen.


Funny. As soon as I typed that last line tears fell from my eyes.


Which seems to be my way right now.


Suddenly crying at the most benign statement.

The casual comment.


The once passive thought that suddenly becomes emotionally aggressive and threatens to rip my heart apart.


I think the biggest challenge will be to not let my head run to the darkest rabbit hole any bunny has ever found.


To not let every fear, doubt and worry take control and rob me of the present moments I share with my girl.


It’s such a cliche to say we want the best for our children.

That we want them to be “perfect” or at worst, “typical” kids - to quiet our own discomfort at the thought of anything less.


Because of course we want this.

Life is fucking hard. Why would we want it to be any harder for those we love the most?


However, so much of what I’m learning about this syndrome is of a life that is anything but “normal.”


Rather, it’s one that could be filled with developmental, emotional, and behavioral challenges that may ultimately impact her quality of life as well as her ability to live and thrive on her own.


Initially defined by growth failure or delay, this syndrome also includes mild to moderate intellectual disability.


And those words, there, the tears. Again…

As our kiddos grow, so do the challenges they face. The requirements they are tasked with in order to strive for what’s ahead

.

For Aspen, the question that will linger is just how capable she is of meeting those demands. Of rising to those challenges. Of being able to hit the developmental milestones set before her.


Will there be a ceiling, cap or a limit to just how far she goes?


We tell our children, their potential is boundless. That you should face life with this belief that anything is possible.


For those given the diagnosis of disease, disability or in our case, a genetic syndrome, do you hold firm the same belief? Do you tell yourself that this child is no different, when everything else points to the fact that umm, yeah, they actually are?


Do you quietly accept that no, you aren’t going to Italy? That Holland is in fact your destination… Hell, you’ve been trying to learn Dutch since the beginning when simply trying to get her to grow became your entire world.


So in truth, I’m honestly confronted with this strange dichotomy right now.

The desire to stay hopeful and believe her potential truly is unknown clashing with the need to temper my expectations to protect my currently, very fragile mama heart.


I’m just… scared.


So terribly scared.

I don’t want her life to be defined by this.


I also don’t want to let her down by my inability to protect her from how hard things may become for her.


Fuck. Tears.


I’d like to keep writing about my journey with Pen.

Our road to a diagnosis.

Our road now on the other side.


For better or for worse, for tears and more tears, putting my thoughts down here seem to ground me in a way that I need. I suppose versus rattling away, causing only chaos and heartache in my head.


And sometimes I just need to say things. Just to make them true.


Things will be okay.

She will be okay.


She will be okay.

-B xo


With special regards to this timeless poem: *Welcome to Holland”.

https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf


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