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to the moms dealing with the Zika virus

Tonight as I'm listening to the news, trying to catch up on work, I hear about the Zika virus and the link to microcephaly--one condition, as you all know, that Audrey has. And as I listen I can't help but feel a couple of things: a burning in my belly of anger and also so much love and compassion for the mamas out there who are getting the news that their baby has this rare condition. With tomorrow marking the 1 year anniversary of Audrey's MRI, which launched us into the journey learning about her genetic disorder, I felt so compelled to write a quick blog. Ignore my typos and rambling. I woke up at 4:30 this morning to get to work by 6...and I consider it a miracle I'm still awake at now 10:36 tonight.

To the mama of the baby with a new (and scary) diagnosis,

I know the dark place you're in right now, and I'm so sorry. I know how it feels when you get the diagnosis from the doctor and the drop you feel in your belly. I know the guilt you feel that you feel, even though you shouldn't. I recall the meeting with infectious diseases recounting my entire pregnancy to see where I may have put my child at risk (here's looking at you soft-serve ice cream). I remember crying with my little baby on my lap as I tried to tear myself away from Dr. Google (he's evil--just don't do it). Only a mama who has been there knows how you feel, and I am so, so sorry you're now a part of the group.

I know the things you hear on the news about your baby's diagnosis are terrifying--mental delays, hearing issues, the fact that your baby may not be able to walk, talk... or that they may be facing a shortened life. It's devastating. And I know it's hard to stop researching, but I'm begging you please, mama, please stop.

As someone who has gone through it myself, looking back now I have some words of advice to offer. If you find yourself starting to google about the diagnosis one more time, stop. If you find yourself feeling like your child's diagnosis is your fault, stop. If you're wondering why...just why...stop.

Here's why...

A diagnosis is just that. A diagnosis. A label. But it does not in any way, shape or form tell you where your child is going to end up on the spectrum and what great things they may accomplish if you treat them the way you would treat a 'normal' child. This is your child's norm and it's SO beautiful if you stop to see it as just that.

I'm not in any way trying to down-play what can be a very serious condition. The effects are very real and scary but if you focus on all the negative, how will you be able to see the beauty and the perfectness that is your child?

Microcephaly, for instance, is just one condition that has a broad spectrum of impact on the child. The news takes it to the far end, the scary end that grabs the viewer/reader's attention, but also doesn't address that some children diagnosed have minimal, if any, negative repercussions. When a baby gets a diagnosis at such a young age, it's hard to say where the child will end up. And, I know it's easier said than done, but why focus on the negative? I was there, and I feel like I robbed myself of some truly wonderful moments because I was so scared. And that brings me to tears just thinking about it now because I think about all the moments I missed out on because I was caught up in the 'what-if's.

And always remember to take each win--all the things that doctors say your child shouldn't be capable of doing--and celebrate. No matter how big or small they deserve to be treasured....or celebrated with cupcakes.

So please mama, as you sit rocking your beautiful baby to sleep tonight, stop and just see your child for who they are. Don't listen as the news, doctors or society tells you they're damaged, abnormal or defective (can I just say that birth defect really rubs me the wrong way?)--they don't know that precious bundle in your arms and what greatness they are capable of. Replace the diagnosis with your sweet baby's name. For that's who they truly are. Not their diagnosis.

All my love,

A Mama Whose Been There (And Survived)


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