I’m a mess about 95% of the time.

I get angry really easily.

I truly and with a deep and abiding passion HATE the disease my daughter has to live with.

I truly and with a deep and abiding passion HATE what her disease has done to our family life.

I wish with every fiber of my being for improvement in her health.

I desire family time that doesn’t have to revolve around her care.

It would be awesome if I could find topics to write about other than adoption or EB, but everything else feels small compared to those two things in my world.

I LOVE all of my children so much it hurts.

I feel helpless most days.

I feel trapped every day.

I feel isolated from “normal”.  I know everyone has their own crazy to deal with, but I’m going to be transparent here, ours feels really really hard compared to other “crazy” that’s out there.

I feel like a brat for thinking we have it harder than others do.

I have a handful of friends and family who I know would do anything for us, and that means the world to me.

I feel compassion for those who struggle with a diagnosis without a cure in sight, and daily care to manage.

I’m tired a lot, but I wonder if it’s true fatigue or medical mama fatigue.  The two are about as different as different can be.

I never wanted a diagnosis to feel like it’s how our family defines itself.

I believe that our family is the perfect family to kick ass when it comes to fighting for our daughter and against her diagnosis.

I cuss sometimes.

I think social media makes the comparison game brutal.

I love social media for the connections it has given me to groups of people I would have never met otherwise.

I’ve unfollowed many a friend on social media, not because I don’t want to be friends, but because I can’t look at what they define as “hard” and reconcile it to the way my family and others like us live.

Transparency frightens me.

Walls make me feel safe.

Naps are my friend.

The Marco Polo app is my idea of a social life these days.

Like many mamas, I worry about the future for my children.  Unlike most mamas, my worries stem from a place that feels unexplainable to the general population.

I have questions I ask God all of the time regarding what He was thinking when He called us to all of this adoptive-medical mess.

I reallllllly don’t like messes.

I think God enjoys cleaning them up and making beautiful things from them.

I guess we’re full circle now.

 

 

2 Comments on “transparent

  1. Whitney, keep being transparent. I am very ill equipped to “do” anything but my heart does ache and my tears do come when you share these raw places. All I know is that there is heavenly reward and restoration that surpasses your wildest dreams. In the immediate your hard is harder than most and your fatigue is more than many mamas. And the future is really uncertain, but God remains. And his love will not fail or fall short. You know that in deeper ways than most, and I thank you for humbly revealing Him as you write and love and live. I’m so proud of you! Your ABBA father is too!

  2. Whitney, your transparency touches me, and deepens my desire to pray— for your precious family especially, and for others who have it so much harder than I do. I love you, dear ❤️ Friend. Please know that my tears fall when I bring you to our God, and seek His intervention for your delightful child, and the whole family. I love you, girl!

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