A Journey Now Less Lonely

One year ago today, we shared with the world that Evie has CHARGE syndrome. It was a scary day for me. What would people think of Evie now? Would they put her in a box of limited possibilities? It was a secret I had guarded for months and was very hesitant to release to the world.

Eeeek!!! Look how teeny tiny she was last year!

Eeeek!!! Look how teeny tiny she was last year!

The doctors had originally ruled out CHARGE in Evie’s first week of life and we were elated. After all the tests for all the possible health issues had wreaked havoc on our emotions, we felt a huge sense of relief with the news that, beyond her choanal atresia, she was healthy.

But then it happened. She didn’t do what they expected of a typical child and instead of improving, she went continually downhill. It was a terrifying time for us, but it wasn’t like an adrenaline enhanced fright. It was this dull ache and horror that just kept knocking on the door, wanting to consume us.  I remember when my optimistic and naive self encountered that horror for the first time. I was standing over Evie in her NICU bed, watching her struggle for every breath and suddenly it hit me. She might not come home with us. Ever. The horror of it sunk in, but there was no adrenalin left after weeks in the NICU to have any kind of release. It just sat there, knocking and waiting.

When she was given her CHARGE diagnosis, I didn’t believe it. I cried and grieved, but then I came out fighting. There was enough doubt in the diagnosis that I wasn’t going to accept it. I guarded that secret of her diagnosis viciously.  We withheld information from family and friends and I refused to reach out to the CHARGE community.

Five months we secretly carried that burden, only sharing with our immediate families, awaiting genetic confirmation (and of course they lost the test!). The fighting part of me was sure we would walk into that appointment with the geneticist and hear the good news that she was not positive for the gene and we could fight the CHARGE diagnosis. Instead we heard, “Congratulations! We figured out what’s wrong! She has CHARGE Syndrome!”

Ouch.

Once I recovered from having the wind knocked out of me, the tears came. There was no more fighting. It was done. We grieved again.

But then…it was okay.

This is a part of who she is. She has CHARGE just like she has blue eyes and strawberry blond hair and a smile that is contagious!

She doesn’t need fixing.

At all.

Yes, we have associated health issues that we need to deal with, but she is who she is. That doesn’t need to be dealt with. She doesn’t need to be cured of CHARGE.

But then the next scary part came: telling the world. We had held back telling because we didn’t want people to limit her. It wasn’t until someone asked me if Evie was “mentally all there” that I realized that because of her health issues (read: the trach), people had already started making assumptions. And it was time to stand up for her.

This is who she is.

We have no idea what her future holds.

Don’t you dare limit her.

And it felt great to share her story and God’s faithfulness.

How could we express how BIG milestones were if you didn’t know the health and sensory issues she’s up against? How could we advocate for acceptance for her and all children with special needs if we tried to hide her diagnoses?

Being open also allowed us to reach out to the CHARGE community, a family I wish I had been willing to join from the beginning. The families we have met have been the most incredible people I’ve ever met. They are the most supportive, most encouraging, most accepting, and most uplifting group of mothers, fathers, grandparents, and adult CHARGErs. I’m so grateful for them!

And now one year later, I can say that the world has been more accepting and supportive of Evie that I dared to dream when I first posted those scary words. Thank you to everyone that has prayed for her and cheered her on! You have made the journey much less lonely and much more joyful!

Since I'm SUPER on top of things and haven't taken Christmas pictures for this year, I'll just post another cutie from last year. This sums up their relationship pretty well most days (especially since Evie took a liking to pulling Big Sister's hair).

Since I’m SUPER on top of things and haven’t taken Christmas pictures for this year, I’ll just post another cutie from last year. This sums up their relationship pretty well most days (especially since Evie took a liking to pulling Big Sister’s hair).

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4 thoughts on “A Journey Now Less Lonely

  1. “How could we express how BIG milestones were if you didn’t know the health and sensory issues she’s up against? How could we advocate for acceptance for her and all children with special needs if we tried to hide her diagnoses?”

    I love this. I really, really, love this. Thank you for this.
    When certain dates roll around every year they inspire a lot of thought on my part as well, sometimes contemplative, sometimes a bit sad- it depends on how things have been going. But being part of a larger community of those who share my daughter’s challenges- and those who share very different challenges as well, has been invaluable.

  2. Pingback: Our New Family | All That Hath Life and Breath

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