January is EA TEF Awareness Month. In today’s post, guest blogger Christine Lester imagines going back in time to the day her son’s EA TEF and VACTERL was diagnosed to offer reassurance and encouragement.  This post comes with a tissue warning!

EA TEF Awareness Month: If I Could Go Back in Time

If I were a time traveler, I would go back to the moment we found out the child I was carrying had something wrong. Well before my husband and I knew the words EA/TEF or VACTERLS. I would find my younger self. This is what I would say to her. First, I would hug her. Like really hug her. Not a nice-to-see-you-hug. Instead it would be a hug that you give someone when their whole world has changed. A hug that stops time as you surrender all of your excess energy into the other person. An embrace that tells another that you will hold them up and support them no matter how perilous the journey ahead may be.

Then I would shout my congratulations. Seriously.
I would shout it as loud as I could.
I would jump up and down!
I would dance with joy.
I would tell her that a child is so much more than any diagnosis.

I would warn this momma that very soon people would shower her with sad eyes. Eyes that surround her will be sprinkled with pity. I would caution her to protect her heart, as others will be quick to offer other choices. Choices that would lead to a very different journey away from having this sweet child. Others would attempt to steal her joy. Create doubt.

I would assure her that no matter what, this can be done.
That for all the doctors know there is always so much more that they do not.
That even when an official diagnosis doesn’t come until birth that it all would still be alright.
That the diagnosis never ever really defined this child anyway.

All the words VACTERLS and Esophageal Atresia/Tracheo-Esophageal Fistula ever did was make a clearer picture out of this hand-me-down puzzle. That there would always be pieces missing. Through the years another piece might suddenly appear bringing the image more into focus. I would urge her to not get complacent with this puzzle. That often a piece that seemed to fit at an earlier date and time might not go where you think it did. It may not even go to this puzzle at all! Know that it is perfectly okay.

I would warn her that there will be more unknowns on this particular path than any other adventure she’s been on.
I would plead with her that even if she knew everything about this medically fragile child before delivery,
it really wouldn’t have changed a thing.
She was exactly where she needed to be.
Others are not as fortunate.

I would tell her not to question the past. That nothing she or her husband did caused this.
If mistakes were made regarding care of this child, that those missteps were taken for a reason.  That she could never, ever, be prepared for all the things that motherhood would surprise her with. How does one prepare for all the inevitable what ifs? How do you take a journey that has no map? No rules. No warning signs or travel tips. You go slowly and step with purpose. You travel with faith & family.

I would tell her to trust her gut and fight like hell!
Especially when the experts urge against it.
I would tell her to read.
Read anything she can find.
That she must educate herself so that she can educate others.
Even if that means educating the ones she may look to for medical advice.
Question everything.
If something doesn’t feel right do not to back down.
That she must advocate for her child and her family, no matter what the cost.
I would tell her that even though this journey would be unbelievably hard, it will be worth it.
So worth it.
If her hearts wish is to give this child siblings, then to do that.
To not get caught up in the fear.

I would caution her that this journey will test friendships and even relationships with family.  This path is not for the selfish or for the weak-hearted. That years later she would know exactly where she stood with anyone left around her. They are not deterred by bumps in the road. They are her support system. Her safety net. Her defenders. They are her family, regardless of the blood that travels through their veins.

I would urge this younger mom to pray more.
Trust more.
That she should let go of all the expectations the world has for her.
That she knows exactly what is truly important.
She has seen life clearer than most.
She has flirted with death.

Lastly, I would tell her that years from now she may have added many more diagnoses to the list.  Yet, when she looks at this child, this amazing child, she will only see the child. 
Looking back she will see the struggles, but more than that, she will see the accomplishments. She will see the memories and all the other moments that makes this beautiful child hers. Theirs. How could she have traveled any other journey? This path, although bumpy, was the one intended for her. It’s made them all stronger.

A diagnosis of EA TEF or VACTERLS just means you gave birth to the strongest person you will ever meet.
They should give trophies at birth for that.
This is our story.
No capes required.

What if You Could Go Back in Time During EA TEF Awareness Month?

Okay. Take a deep breath, wipe your eyes, blow your nose, and think for a minute. What would you go back and tell your younger self at the moment of diagnosis? Then, if you’d like to share your advice, add it in the comment box.

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